Browse content similar to 13/10/2016. Check below for episodes and series from the same categories and more!
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an adjournment debate to highlight this in the future. Present`tion of | :00:00. | :00:09. | |
Bill, Amber Road. We now cole to the first of two debates under the | :00:10. | :00:15. | |
auspices of the Backbench Btsiness Committee, the motion in thhs case | :00:16. | :00:27. | |
to be moved by Antoinette S`ndbach. I beg to move that this house has | :00:28. | :00:32. | |
considered baby laws. Is an honour and privilege to open this debate. I | :00:33. | :00:37. | |
would like to thank you for giving the use of your house to latnch Baby | :00:38. | :00:46. | |
Lost Awareness Week, the first time this has been officially recognised. | :00:47. | :00:50. | |
Parliament is helping to brdak the silence around the death of a child, | :00:51. | :00:54. | |
which is the most devastating loss that can happen to any parent. Last | :00:55. | :01:01. | |
year, a member of the Royal Court Jester and I spoke on this `nd | :01:02. | :01:05. | |
neither of us were prepared for the huge response from parents have | :01:06. | :01:09. | |
suffered similar losses. Thd Prime Minister, in her recent spedch, | :01:10. | :01:14. | |
talked about tackling injustice where she founded. The scald of | :01:15. | :01:18. | |
child lost in the UK is an hnjustice and one which is suffered bx so many | :01:19. | :01:25. | |
families. The scale of child lost in the UK is devastating for e`ch | :01:26. | :01:30. | |
family involved. I would like to outline the size of the problem | :01:31. | :01:34. | |
facing appearance, then spe`k about what can be done to prevent loss on | :01:35. | :01:39. | |
the skill we are currently facing in the UK and finally talking `bout | :01:40. | :01:43. | |
bereavement care and best practice that can support parents through | :01:44. | :01:47. | |
this terrible time. I want to talk about the major types of chhld lost, | :01:48. | :01:52. | |
including miscarriage, stillbirth and neonatal death, although there | :01:53. | :01:58. | |
are other areas to be looked at including ectopic pregnancids and | :01:59. | :02:04. | |
many other specialist areas, like multiple birth pregnancies. I'm | :02:05. | :02:08. | |
going to start with miscarrhage One in four pregnancies will end in | :02:09. | :02:14. | |
miscarriage. This is often ` silent killer, one where parents rdceived | :02:15. | :02:19. | |
very little support. Of the estimated 200 mothers and their | :02:20. | :02:22. | |
families who are affected bx miscarriage every year, manx will | :02:23. | :02:28. | |
suffer in silence and isolation And a woman has goes through three | :02:29. | :02:33. | |
consecutive miscarriages before any investigation will be carridd out. | :02:34. | :02:40. | |
One woman speaking of her experience after four miscarriages said, the | :02:41. | :02:45. | |
lack of recognition of misc`rriage serves to reinforce the ide` that | :02:46. | :02:49. | |
somehow a pregnancy didn't latter, which increases the feelings of | :02:50. | :02:54. | |
isolation. She went on to s`y, the loneliness and isolation th`t | :02:55. | :02:56. | |
miscarriage brings underweight can affect other aspects of lifd, hopes, | :02:57. | :03:04. | |
dreams, decisions about work, are so difficult and yet under recognised. | :03:05. | :03:09. | |
We need to diss mystify it `nd make it OK to talk about. One parent I | :03:10. | :03:14. | |
know wrote this to me, before I even knew I was pregnant, I developed a | :03:15. | :03:21. | |
butterfly rash across my chdst. My GP dismissed it as an allergic rash, | :03:22. | :03:26. | |
no blood tests, nothing. Whdn I miscarried nine weeks later, GP | :03:27. | :03:32. | |
cheerily said, keep trying, miscarriage is, common at r`ge. I | :03:33. | :03:39. | |
was 37. No blood tests, feeling disheartened and dismissed, I went | :03:40. | :03:44. | |
on to a further two early miscarriages without daring to call | :03:45. | :03:49. | |
the GP and waste his time. @s my fourth miscarriage, I startdd | :03:50. | :03:51. | |
looking on the Internet and approached the GP again. I `sked if | :03:52. | :03:59. | |
it could be due to my existhng condition. Extremely unlikely, I was | :04:00. | :04:04. | |
told. Again, no blood test, but a recommendation to quit my stressful | :04:05. | :04:12. | |
job. I obliged. It was only at her routine hospital checked with my | :04:13. | :04:15. | |
thyroid doctor for years later that I hear, this sounds like Q syndrome, | :04:16. | :04:22. | |
let's do bloods tests. The hospital confirmed the diagnosis, but sadly | :04:23. | :04:27. | |
not soon enough to save the baby I was carrying, I fifth. Happhly, | :04:28. | :04:33. | |
after proper treatment, I bdcame pregnant again, finally givhng birth | :04:34. | :04:37. | |
to a healthy boy on the eve of my 42nd birthday. After five | :04:38. | :04:42. | |
miscarriages and five years of my life lost hope and grief, I still | :04:43. | :04:50. | |
feel cheated and a little bhtter. I urge you please give miscarriage the | :04:51. | :04:54. | |
research resources and respdct it deserves. This is just one dxample | :04:55. | :04:59. | |
of why we need action taken to help us find the root causes of | :05:00. | :05:03. | |
miscarriage. I'm pleased th`t earlier this year, the first | :05:04. | :05:08. | |
miscarriage research Centre in the UK, dedicated to preventing early | :05:09. | :05:15. | |
miscarriage opened. That centre is working with Warwick, Birmingham and | :05:16. | :05:20. | |
Imperial NHS trusts, as well as Queen Charlotte's. The undertaking | :05:21. | :05:28. | |
excellent research, because my sister, who has had seven | :05:29. | :05:31. | |
miscarriages, has benefited from the work they have done and this year, | :05:32. | :05:37. | |
she has given birth to a baby. I am thrilled for her. The coalition is | :05:38. | :05:45. | |
there, are working and doing ground-breaking work on the Genesis | :05:46. | :05:49. | |
Project, looking at the isstes around early miscarriage. As an | :05:50. | :05:54. | |
example of how dedicated thd staff are, the receptionist, who had seen | :05:55. | :06:00. | |
women walking in and out of Queen Charlotte's, organised a support | :06:01. | :06:08. | |
group in their own time on Saturday. The coalition 's attenders, | :06:09. | :06:10. | |
psychologists attended and doing that in their own free time. It has | :06:11. | :06:16. | |
benefited a huge number of women. That learning has the potential to | :06:17. | :06:20. | |
support some of the work thd government would like to achieve in | :06:21. | :06:31. | |
of tackling our child loss rates. In 2014, 3245 stillbirths were | :06:32. | :06:37. | |
recorded. That rate is shockingly high for a high income country. Even | :06:38. | :06:42. | |
more frightening is the fact that the causes of 46% of stillbhrths are | :06:43. | :06:48. | |
unknown. This is devastating for families who want answers. Ht is | :06:49. | :06:52. | |
also unacceptable that in this day and age more is not done to identify | :06:53. | :06:59. | |
the cause of death. When colbined with neonatal death rates, over 6000 | :07:00. | :07:04. | |
patients are suffering child lost each year. Feelings of isol`tion and | :07:05. | :07:09. | |
loneliness are experienced by parents who suffer other forms of | :07:10. | :07:18. | |
child laws, and the data on tackling stillbirth rates the UK 114 out of | :07:19. | :07:24. | |
164 countries for progress hn reducing stillbirth. Justin Fowler | :07:25. | :07:31. | |
and engaged in the digital outreach debate organised by this hotse on | :07:32. | :07:36. | |
Monday, he put it this way, to the nurse that has had a bad dax that | :07:37. | :07:40. | |
didn't take correct measurelents, that failed to notice a lack of | :07:41. | :07:45. | |
growth, but chose not to look at previous records, that decided not | :07:46. | :07:50. | |
to engage with the mother, that was instrumental in the loss of a baby. | :07:51. | :07:55. | |
We don't want an apology, who actions were unintentional. We don't | :07:56. | :08:01. | |
want you to lose your job. Xou need to continue in your post. In future, | :08:02. | :08:05. | |
we know you will be more careful, you will be a model nurse, because | :08:06. | :08:10. | |
you will know what can happdn if you have just one bad day. When you have | :08:11. | :08:15. | |
lost their baby, you don't want to prevent retribution or compdnsation, | :08:16. | :08:21. | |
you only want to be understood and for it never to happen again. That | :08:22. | :08:26. | |
powerful quote reflects what so many parents have said to me, thdy want | :08:27. | :08:31. | |
lessons to be learnt and most of all, they don't want it to happen to | :08:32. | :08:36. | |
anyone else. In order to achieve this, there needs to be better | :08:37. | :08:41. | |
investigation of full-term stillbirth, where no fatal | :08:42. | :08:44. | |
abnormalities present. Therd needs to be greater willingness to discuss | :08:45. | :08:51. | |
postmortems with parents, so that causes can be identified. | :08:52. | :09:16. | |
Would my right honourable friend give way? She's making a wonderful | :09:17. | :09:20. | |
speech and I'm glad to be in this debate. I'm here because of my | :09:21. | :09:27. | |
constituent, who was one of his twin sons due to some mistakes dtring the | :09:28. | :09:32. | |
process and he's particularly concerned that we should take on the | :09:33. | :09:38. | |
messages in the report she was referring to about importance of | :09:39. | :09:41. | |
learning and the importance of reviews and I just want to tnderline | :09:42. | :09:44. | |
the point she's making and look forward to hearing from the minister | :09:45. | :09:46. | |
what the government is doing we can do that. | :09:47. | :09:51. | |
I am grateful for that intervention because it makes the point. Says | :09:52. | :10:01. | |
Cameron went on to say, stillbirth rates in the UK remain high, and our | :10:02. | :10:06. | |
current data indicates that nearly a thousand babies every year die. . | :10:07. | :10:15. | |
The emotional cost of these events is immeasurable. When the ottcome | :10:16. | :10:18. | |
for parents is the devastathng loss of a baby or a baby born with severe | :10:19. | :10:25. | |
brain injury, there can be little justification for poor qualhty | :10:26. | :10:29. | |
reviews. Only by ensuring local investigations are conducted | :10:30. | :10:33. | |
thoroughly and with patient and external input, can we identify | :10:34. | :10:39. | |
where systems need to be improved. Once every baby affected has the key | :10:40. | :10:46. | |
reviewed robustly, we can bdgin to understand the causes of thdse | :10:47. | :10:49. | |
tragedies. The pagans who engaged in the Twitter Digital debate darlier | :10:50. | :10:53. | |
this week to raise their concerns around baby loss spoke of the need | :10:54. | :10:57. | |
for third trimester scans and greater consistency of care during | :10:58. | :11:05. | |
the pre-birth period, during labour and following the loss of an | :11:06. | :11:12. | |
incident. I now want to movd on to neonatal death. I spoke of ly | :11:13. | :11:15. | |
experiences with Sam last ydar. Parents round the country wrote to | :11:16. | :11:18. | |
me with their experiences, some dating back many years and others | :11:19. | :11:23. | |
more recently. One father told me about his son George. He wrote, on | :11:24. | :11:28. | |
the 7th of November, my wifd and I were delighted when baby George came | :11:29. | :11:33. | |
into our lives. But on the 4th of January, just days after thd | :11:34. | :11:37. | |
Christmas festivities, our lives were rocked when our beautiful baby | :11:38. | :11:42. | |
boy passed away in his sleep. Nothing could have prepared us for | :11:43. | :11:47. | |
the hopelessness and feeling of loss. Each morning, waking tp | :11:48. | :11:50. | |
wishing it was just a bad dream We watched the second is turning two | :11:51. | :11:57. | |
hours, days, weeks and even months. Things for us felt hopeless. It was | :11:58. | :12:04. | |
only the knowledge that our other children beaded us that kept us from | :12:05. | :12:07. | |
drowning in self-pity. George's father went on to say that like | :12:08. | :12:13. | |
other parents, I found everxone affected sheared similar | :12:14. | :12:21. | |
experiences, all wanting to do something and make a differdnce | :12:22. | :12:23. | |
That is probably why I feel I should do more. Moore is never enotgh. I | :12:24. | :12:28. | |
know putting my spare time `nd to raising awareness of sudden infant | :12:29. | :12:30. | |
death syndrome and raising loney for charities. Give way. I am vdry | :12:31. | :12:38. | |
grateful. She is making an incredibly emotional speech. Two of | :12:39. | :12:44. | |
my constituents attended a reception yesterday kindly provided bx Mr | :12:45. | :12:51. | |
Speaker. They suffered, thex lost their baby stillborn in Scarborough | :12:52. | :12:58. | |
Hospital, and stayed on a m`ternity ward listening to babies crxing | :12:59. | :13:03. | |
with expectant mothers, the most tragic of circumstances. Wh`t she | :13:04. | :13:06. | |
did following that, she started to raise money, she put her endrgies | :13:07. | :13:16. | |
into good use, raising ?9,000 towards ?134,000 bereavement suite | :13:17. | :13:20. | |
at Scarborough Hospital. Dods she agree that parents through this can | :13:21. | :13:28. | |
make a difference to other people and engaged so much support through | :13:29. | :13:35. | |
that process? I do agree, and I met her last year following on from the | :13:36. | :13:39. | |
speech in Parliament. I know that there are so many parents lhke that | :13:40. | :13:42. | |
want to see some good come out of the loss, and actually it | :13:43. | :13:49. | |
demonstrates the importance of motivating those parents and | :13:50. | :13:52. | |
allowing them to get involvdd very often because the snowdrop suite at | :13:53. | :13:57. | |
Scarborough Hospital acts as a real reminder in the memory of their | :13:58. | :14:07. | |
baby. I will give way. I am very grateful. Can I congratulatd her on | :14:08. | :14:20. | |
securing this debate today? She s talking about the desire of parents | :14:21. | :14:25. | |
to see some good from their loss, and I wondered if she would agree | :14:26. | :14:30. | |
with me that part of that critical process is for NHS trusts where | :14:31. | :14:37. | |
feelings have occurred to communicate on an ongoing b`sis with | :14:38. | :14:43. | |
the parents about the actions steps being taken to ensure these | :14:44. | :14:54. | |
tragedies are not repeated. The more they can share this information the | :14:55. | :14:58. | |
more we are likely to achieve reductions in these rates bdcause we | :14:59. | :15:03. | |
need to have that learning hn order to tackle what went wrong and why, | :15:04. | :15:07. | |
and without that openness wd do not have it. In relation to the | :15:08. | :15:15. | |
bereavement suite, Freedom of information requests I submhtted to | :15:16. | :15:21. | |
every NHS England trust indhcated that 25% of maternity hospitals do | :15:22. | :15:24. | |
not have bereavement suites, and I am aware that the government has | :15:25. | :15:31. | |
done much to make funding available and action is being taken to tackle | :15:32. | :15:35. | |
that because of the huge difference that it makes to parents. Thank you | :15:36. | :15:50. | |
for the debate and to the honourable gentleman contributing to the | :15:51. | :15:56. | |
debate. One in four pregnancies end in loss, and everyone in thhs House | :15:57. | :16:03. | |
will have seen this, with staff members, family members. We want to | :16:04. | :16:09. | |
take the opportunity to stand with those who have lost a baby `nd say | :16:10. | :16:14. | |
we pray for peace with your family. That she acknowledged the ilportance | :16:15. | :16:20. | |
in the grieving suite to have the church to help and assist? ,- does | :16:21. | :16:32. | |
she acknowledge? Dorset and Bassett health trust, the midwife and | :16:33. | :16:35. | |
Chaplin have developed an alazing suite of resources to support | :16:36. | :16:41. | |
parents, and the information has been tailor-made to the loss they | :16:42. | :16:45. | |
are facing, whether it is a miscarriage or stillbirth, they get | :16:46. | :16:48. | |
information. And that has all been done in their own time and tnpaid | :16:49. | :16:53. | |
and unsupported. Bidders th`t level of dedication at every -- there is | :16:54. | :17:07. | |
that level of dedication. Brett Lee area that does not have this, there | :17:08. | :17:11. | |
really that are providing the support. Like George's fathdr, the | :17:12. | :17:15. | |
members also want to make a difference. We welcome the | :17:16. | :17:18. | |
commitment the government h`s made to a 20% reduction in stillbirth | :17:19. | :17:26. | |
rates by 2020, and halting those rates by 2030, and the additional | :17:27. | :17:30. | |
resources that have been put into the perinatal mortality tool. - | :17:31. | :17:36. | |
halving those rates. An addhtional tool we believe will help ddliver | :17:37. | :17:42. | |
these targets. The report ydsterday identifies three key aims. Firstly, | :17:43. | :17:47. | |
prevention. We need a sustahned public health campaign that informs | :17:48. | :17:52. | |
parents of known risks. We know that parents of twins are three times | :17:53. | :17:57. | |
more likely to suffer loss. Black and ethnic minority groups face much | :17:58. | :18:02. | |
higher rates of stillbirth `nd loss. Mothers over 40, mothers living in | :18:03. | :18:09. | |
poverty and teenage mothers all have increased risks of stillbirth or | :18:10. | :18:10. | |
neonatal death. I am most grateful to the honourable | :18:11. | :18:21. | |
members for executing this debate today. I would like to quotd, we | :18:22. | :18:28. | |
don't just suffer the loss of a baby, we'll is told, a child, a | :18:29. | :18:34. | |
teenager, birthdays, Christlas day, Mother's Day, Father's Day. The pain | :18:35. | :18:38. | |
of losing a child never leaves you. She would like to raise that a third | :18:39. | :18:44. | |
trimester scan would have m`de a significant difference in hdr case. | :18:45. | :18:49. | |
I am very grateful to you for raising that point. We know that | :18:50. | :18:54. | |
information needs to be targeted at high risk groups. Messages `round | :18:55. | :19:01. | |
smoking during pregnancy, rhsks associated with obesity and of | :19:02. | :19:06. | |
course, the importance of not sharing bed with your baby `nd | :19:07. | :19:10. | |
putting them back to sleep. The success of the Back To Sleep | :19:11. | :19:16. | |
Campaign showed what can be achieved in reducing sudden infant ddath We | :19:17. | :19:23. | |
now need similar campaigns for stillbirth, in relation to Count The | :19:24. | :19:30. | |
Kicks and reduced fatal movdment. It is vital that the messages `re | :19:31. | :19:40. | |
targeted at most at risk groups in order to have the biggest ilpact. I | :19:41. | :19:47. | |
will give way. She has given great service in raising this isste today. | :19:48. | :19:56. | |
What I find about her comments is it's very informative to people like | :19:57. | :20:04. | |
me, who have not experienced it and learning that one individual had | :20:05. | :20:08. | |
five or six miscarriages before anything happened to it, and it is | :20:09. | :20:15. | |
very enlightening for me. I think it is shocking and actually, | :20:16. | :20:19. | |
miscarriages one of the sildnt subjects. I think there will be | :20:20. | :20:24. | |
other members who will be speaking, or you will know of their own | :20:25. | :20:30. | |
experiences. The second principle is around commissioning. We know the | :20:31. | :20:35. | |
knowledge and learning is ott there, there are some inspirational NHS | :20:36. | :20:40. | |
trusts, consultants, midwivds and chaplains that have established best | :20:41. | :20:47. | |
practice in a hospital. Rit` Manchester clinicians, Lanc`shire | :20:48. | :20:50. | |
and South Cumbria strategic clinical networks have developed a stillbirth | :20:51. | :20:58. | |
specific clinical pathway. @nother trust has interviewed butterfly | :20:59. | :21:01. | |
signs on maternity doors to alert staff when parents have lost a baby, | :21:02. | :21:06. | |
and adapted their literaturd to make sure they receive relevant | :21:07. | :21:13. | |
information. Abigail's Footsteps provides equipment to hospitals | :21:14. | :21:18. | |
This work being carried out these to be shared within the NHS to address | :21:19. | :21:24. | |
the gaps in servers where p`rents are effectively left to fend for | :21:25. | :21:28. | |
themselves. This means that there needs to be better and more | :21:29. | :21:32. | |
effective training by health care professionals. The fact that limited | :21:33. | :21:36. | |
bereavement training, somethmes as little as an hour, is given to | :21:37. | :21:42. | |
midwives before qualification is really not acceptable, given the | :21:43. | :21:47. | |
stillbirth rates that we have. There needs to be better pre-qualhfication | :21:48. | :21:51. | |
training, including force on first, GPs and midwives, given the | :21:52. | :21:57. | |
statistics. There are a number of inspirational examples of good | :21:58. | :22:01. | |
practice in the country, and this weekend, there being celebr`ted at | :22:02. | :22:07. | |
the Butterfly Awards in Worcester. If you have good practice in your | :22:08. | :22:12. | |
constituency, think about nominating them by next year's awards. I thank | :22:13. | :22:21. | |
the honourable lady forgiving way, and thank her very much for bringing | :22:22. | :22:25. | |
this debate to the house. If there's one thing we can do is break taboos | :22:26. | :22:30. | |
and she has done that very successful, along with other | :22:31. | :22:34. | |
members. On that, does she think it's partly because of that taboo | :22:35. | :22:38. | |
that we have such poor training So that the more we talk about | :22:39. | :22:41. | |
miscarriage and stillbirth, the better it will be? Yes, I cdrtainly | :22:42. | :22:51. | |
do. Baby Last Week has been running for 30 years, but we need to make | :22:52. | :22:56. | |
sure it affects policy, that it delivers better outcomes and that | :22:57. | :22:59. | |
weirdos out games don't change, we hold the Secretary of State and | :23:00. | :23:03. | |
minister to account. I know they have recognise there is a problem, | :23:04. | :23:08. | |
but we will need to see that changing figures by 2020. I will | :23:09. | :23:16. | |
give way. I thank her forgiving way and I just wanted to add my | :23:17. | :23:21. | |
congratulations and also my intense respect and admiration for the way | :23:22. | :23:27. | |
in which she has given such a moving, but also evidence -based | :23:28. | :23:33. | |
billing to this debate. She mentioned the Butterfly Awards. A | :23:34. | :23:39. | |
charity which offers online help for those who have lost a baby hs | :23:40. | :23:44. | |
campaigning for a day to recognise baby loss, October 15, as wdll as | :23:45. | :23:49. | |
the awareness. Does she think that could help to make us more `ware and | :23:50. | :23:55. | |
also to gain greater respect and understanding for those who have | :23:56. | :24:00. | |
suffered? I think that October the 15th is the International W`ve Of | :24:01. | :24:07. | |
Late Day and parents across the world like candles in memorx of | :24:08. | :24:11. | |
their children. I think there's a lighthouse in Scotland that has been | :24:12. | :24:16. | |
let up for the first time in memory of lost children, so I do agree that | :24:17. | :24:23. | |
if we talk about the issues and really start to drill down to the | :24:24. | :24:27. | |
causes, we can really changd the figures that we have in the UK, and | :24:28. | :24:32. | |
key to that is raising thesd issues here in this place. Our fin`l as to | :24:33. | :24:39. | |
the Secretary of State for Health and the Minister is for a | :24:40. | :24:43. | |
bereavement care pathway for parents, meaning that there needs to | :24:44. | :24:49. | |
be an integrated service of support, including counselling for p`rents | :24:50. | :24:54. | |
following the death of a chhld. I am very grateful that following the | :24:55. | :25:02. | |
work of their APPG and some of the information that has come ott of the | :25:03. | :25:06. | |
Freedom of information requdst, the Department of Health has | :25:07. | :25:11. | |
commissioned work to start developing that pathway. But it s | :25:12. | :25:15. | |
clear it requires clinical commissioning groups, it repuires | :25:16. | :25:21. | |
GPs, it requires local NHS trusts and health care professionals really | :25:22. | :25:26. | |
to recognise the need for these services and to support that | :25:27. | :25:31. | |
pathway, working together whth the third sector, many charities... I | :25:32. | :25:40. | |
will give way. I'm extremelx grateful and I thank her and my | :25:41. | :25:44. | |
honourable friend in Colchester for bringing this issue into thhs | :25:45. | :25:48. | |
chamber. A mother and father in my constituency had the nightm`re of | :25:49. | :25:51. | |
their baby by passing away unexpectedly at home, and the baby | :25:52. | :25:57. | |
boy was rushed to the nearest hospital, which happens to be in a | :25:58. | :26:03. | |
different region, and the f`ct that the death was registered in a | :26:04. | :26:05. | |
different region from where my constituents live has caused them | :26:06. | :26:15. | |
incredible problems, not le`st in accessing counselling Kevin P. Does | :26:16. | :26:19. | |
she agree that regional boundaries must not prevent grieving p`rents | :26:20. | :26:23. | |
from getting the help they need and deserve? I most certainly do, and | :26:24. | :26:28. | |
that's the kind of pewter Craddick barrier that needs to be broken | :26:29. | :26:33. | |
down. It demonstrates so powerful array there needs to have a proper | :26:34. | :26:38. | |
bereavement care pathway in place in every region, so it shouldn't matter | :26:39. | :26:43. | |
where you live, as to whethdr or not you can access that support. My | :26:44. | :26:54. | |
final intervention. An exceptionally grateful to her forgiving w`y. Would | :26:55. | :26:59. | |
she envisage with regard to that integrated bereavement care pathway | :27:00. | :27:04. | |
at the same level of servicd by parents who have suffered | :27:05. | :27:07. | |
bereavement post hospital dhscharge, as other parents would otherwise | :27:08. | :27:13. | |
receive in their own homes? I do agree, it shouldn't matter what kind | :27:14. | :27:16. | |
of loss you have suffered, xou should be able to access th`t | :27:17. | :27:21. | |
bereavement care pathway, whether it's in hospital or outside | :27:22. | :27:31. | |
hospital. Finally... I'm very grateful and you've been very | :27:32. | :27:35. | |
generous, but before you concluded your remark, as a fellow officer of | :27:36. | :27:40. | |
this all-party group, along with yourself and the men's Burford | :27:41. | :27:43. | |
Chichester and the member for Banbury, I wanted to commend you and | :27:44. | :27:48. | |
the following officers on breaking the taboo, and your bravery in | :27:49. | :27:53. | |
bringing forward this issue for debate in this house. It is so | :27:54. | :27:58. | |
important, and as someone, ly daughter Lucy would have bedn 1 | :27:59. | :28:03. | |
this year, and when I becamd NMB 11 years ago, I was attended to, but I | :28:04. | :28:09. | |
didn't have the bravely shedted so I just wanted to commend yot for | :28:10. | :28:14. | |
that. I am very grateful and annual know how important this is to how | :28:15. | :28:19. | |
the important work she has done in helping us in the all- partx group | :28:20. | :28:25. | |
in setting out these aims and this vision, so that other parents can | :28:26. | :28:32. | |
benefit from our experiences here. We know there are a number of | :28:33. | :28:36. | |
brilliant charities whose energy and commitment could be brought together | :28:37. | :28:44. | |
with NHS trusts to help delhver that care pathway that is so badly needed | :28:45. | :28:48. | |
for appearance, such as my honourable friend. By breakhng the | :28:49. | :28:58. | |
silence and the Tabuk of talking about child to death, the APPG | :28:59. | :29:04. | |
composing of parents, all of whom have suffered loss, hopes that the | :29:05. | :29:09. | |
debate will lead to better scrutiny of what is happening in matdrnity | :29:10. | :29:14. | |
units and primary care, rel`tive to child lost. We welcome the | :29:15. | :29:17. | |
additional focus from the government in this area, but there is lore to | :29:18. | :29:23. | |
be done if other families are not to suffer the same grief and loss as so | :29:24. | :29:29. | |
many parents currently do in the UK. I'm sorry, I'm going to conclude. | :29:30. | :29:34. | |
The time has come to act and see real change in the rates of child | :29:35. | :29:39. | |
lost. I want to thank all the charities and bereaved parents who | :29:40. | :29:42. | |
worked with us and his expertise has helped inform this debate. @nd I | :29:43. | :29:47. | |
know that other members will have their own personal contributions to | :29:48. | :29:56. | |
make. Thank you. Just beford I bring in the next Bill. And not ilposing a | :29:57. | :30:01. | |
time, but if we aim for ten minutes, then everybody will have thdir | :30:02. | :30:07. | |
speech time and it will be dquated across the chamber. Thank you. I | :30:08. | :30:15. | |
want to start by paying tribute to the honourable members for securing | :30:16. | :30:20. | |
this debate is today. This hs probably the hardest speech I have | :30:21. | :30:24. | |
ever had to write and delivdr. This week has been a tough week, as I had | :30:25. | :30:33. | |
never heard of Baby Loss Aw`reness Week, but it has been all around me, | :30:34. | :30:38. | |
in online discussions, commdmorative badges and a debate in the chamber | :30:39. | :30:43. | |
today. I have struggled, debating with myself as to whether or not I | :30:44. | :30:48. | |
should contribute in here, ht's such a personal issue. And do I want to | :30:49. | :30:53. | |
share my very personal experiences? The absolute truth is I strtggled to | :30:54. | :30:57. | |
talk to my family and my very close friends about it, but during the | :30:58. | :31:04. | |
events this week, I can see a large focus is on people talking `bout | :31:05. | :31:08. | |
their loved ones, supporting each other and making sure that when | :31:09. | :31:12. | |
needed, important issues ard raised and addressed. I want to th`nk all | :31:13. | :31:17. | |
my friends who have come into the chamber today to support me, as I | :31:18. | :31:21. | |
know they know how hard this is for me. I also want to apologisd to my | :31:22. | :31:30. | |
many friends... I also want to apologise to my many friends who I | :31:31. | :31:35. | |
haven't told. It's not becatse I don't want to, that I don't want you | :31:36. | :31:40. | |
to know or embarrassed, is just that I find it so hard to do so. But ever | :31:41. | :31:47. | |
since I was elected, I alwaxs wanted to be the kind of politician that | :31:48. | :31:51. | |
was willing to share my expdriences. Not for therapy, but to empower | :31:52. | :31:57. | |
others and to seek to changd things for the better. Lewisham Bereavement | :31:58. | :32:01. | |
Counselling Service Calais Tells Me There Is A Waiting List Of Tp To | :32:02. | :32:04. | |
Four Months And This Is Not Good Enough. So I Guess Now Is The Time | :32:05. | :32:12. | |
For Me To Talk And Pay Tribtte To My Little Angel Veronica Calais. When I | :32:13. | :32:17. | |
Was 16 Years Old, I Became Unexpectedly Pregnant. At fhrst I | :32:18. | :32:25. | |
was terrified and even conshdered having her adopted. But durhng my | :32:26. | :32:29. | |
pregnancy, I became so attached I was excited, I was going to be the | :32:30. | :32:35. | |
best mum ever. Me and my partner at the time named our baby girl | :32:36. | :32:38. | |
Veronica. We couldn't wait to meet her. I went full term and w`s ten | :32:39. | :32:44. | |
days overdue, so they had to induce me. I was in Labour for a long time, | :32:45. | :32:50. | |
I was sick and tired and in a huge amount of pain. The's heartbeat was | :32:51. | :33:02. | |
checked regularly and everything was fine. Then once I was directed, | :33:03. | :33:04. | |
reject for a heartbeat again and they couldn't find it. This went on | :33:05. | :33:07. | |
for about 20 minutes, checkhng different machines, because they | :33:08. | :33:09. | |
didn't know of the equipment was broken or not. Eventually, ` doctor | :33:10. | :33:13. | |
was called and I was rushed to the emergency room, where I had to push | :33:14. | :33:18. | |
and forceps were used to get about. The umbilical cord had been wrapped | :33:19. | :33:23. | |
around her throat by 20 minttes She lived for five days and we had to | :33:24. | :33:27. | |
agree to the life machine bding turned off. I got a hold of them for | :33:28. | :33:32. | |
the first time, and tell her heartbeat eventually stopped. She | :33:33. | :33:36. | |
stayed alive for hours. I ndver wanted to let her go. My Baby | :33:37. | :33:44. | |
Awareness Week is every year, 2 nd of February to the 27th of February, | :33:45. | :33:50. | |
my five days of hard being `live. But she was never able to cry or | :33:51. | :33:55. | |
smile, but I loved her. I still love her. She has always at my thoughts, | :33:56. | :34:00. | |
all these years afterwards, even if I don't talk about Robert thme. | :34:01. | :34:06. | |
That's not because I'm embarrassed, and not, is because it hurt so much | :34:07. | :34:12. | |
to do so. After Veronica was taken from me, my coping mechanisl was to | :34:13. | :34:18. | |
throw myself into college and work. I couldn't talk about it. Mx heart | :34:19. | :34:24. | |
was broken. I don't have chhldren now, because I have lived whth the | :34:25. | :34:27. | |
fear of the same thing happdning and I couldn't do it twice. But I have | :34:28. | :34:33. | |
to say, as a young woman, going through this, I felt that most | :34:34. | :34:38. | |
people looked at me as if I should be grateful, and I wasn't, `nd I'm | :34:39. | :34:43. | |
not. Every organisation I ddalt with felt like they gave me that same | :34:44. | :34:50. | |
message. Every time I wanted to do a campaign to highlight the problems | :34:51. | :34:53. | |
that led to her life being taken away so unfairly, I was tre`ted like | :34:54. | :34:59. | |
a child, not like a grieving mother. I was her mum. I also hoped one day | :35:00. | :35:05. | |
that I would be her best frhend If she was alive today, she wotld be 23 | :35:06. | :35:11. | |
years old. The pain does get easier to deal with overtime, but ht never, | :35:12. | :35:15. | |
ever goes away. I really welcome debate today and genuinely paid | :35:16. | :35:20. | |
tribute to the members for bringing it forward, and I hope one day, | :35:21. | :35:26. | |
nobody else as to ensure thhs pain. I want my experience to be heard by | :35:27. | :35:31. | |
government in my constituency and across the country, who havd, or may | :35:32. | :35:35. | |
go through this in the future, and just to see you are not alone. | :35:36. | :35:45. | |
I hope that the whole House will read the honourable Lady's speech | :35:46. | :35:55. | |
and will feel that she has done something incredibly brave today. | :35:56. | :36:05. | |
And courageous. And to my honourable friend who have proposed thhs | :36:06. | :36:10. | |
debate, nothing but the gre`test respect is due to my honour`ble | :36:11. | :36:16. | |
friend who first spoke about this with such courage and | :36:17. | :36:25. | |
straightforwardness. All our thoughts are with her and all the | :36:26. | :36:29. | |
other parents who have suffdred these terrible losses. I do not | :36:30. | :36:36. | |
think it is possible having heard the honourable lady, I know it is | :36:37. | :36:39. | |
not possible. For anyone who has not suffered the unbearable tragedy of | :36:40. | :36:45. | |
the loss of a child to trulx understand the grief and pahn and | :36:46. | :36:52. | |
the hopeless feeling is that it must involve, and I must congrattlate my | :36:53. | :36:58. | |
honourable friend is on sectring this very important debate on this | :36:59. | :37:07. | |
issue. I would like to speak about two issues. First of all a wonderful | :37:08. | :37:11. | |
charity with whom I have worked for the last 15 years, and which is very | :37:12. | :37:19. | |
close to my heart, and which I greatly admire. I am patron of the | :37:20. | :37:27. | |
charity group B strep support. I became aware of the charity in 003 | :37:28. | :37:34. | |
when the founder and chief dxecutive came to see me, remarkable women. | :37:35. | :37:43. | |
And she met with me to raisd the issue. Jane and her husband Robert | :37:44. | :37:51. | |
lost their middle son to a group B strep infection in 1996, less than | :37:52. | :37:55. | |
one day after he was born. H learned that group B strep is the c`use of | :37:56. | :38:04. | |
the most -- most common cause of meningitis in babies under three | :38:05. | :38:10. | |
months, and also causes sepsis and pneumonia. It is truly shocking that | :38:11. | :38:14. | |
on average one baby a day in the United Kingdom develops grotp B | :38:15. | :38:19. | |
strep infection, one baby a week dies from a group B strep infection | :38:20. | :38:23. | |
and one baby every two weeks survived with long-term | :38:24. | :38:28. | |
disabilities. And even more shocking is that most Group B infecthons in | :38:29. | :38:36. | |
babies and should be prevented. -- can and should be prevented. The | :38:37. | :38:42. | |
wider family then live with the consequences of their baby's | :38:43. | :38:45. | |
unnecessarily horrible illndss for the rest of the lights. I h`ve to | :38:46. | :38:53. | |
say, I will give way. He will know of the case of Fiona and Scott, my | :38:54. | :39:01. | |
constituents, whose son Edw`rd tragically died at just nind days | :39:02. | :39:08. | |
old from a group B strep infection, and as devastated as they wdre and | :39:09. | :39:11. | |
still are, they have channelled that grief into campaigning work and that | :39:12. | :39:15. | |
petition which has reached nearly quarter of a million signattres | :39:16. | :39:17. | |
Will he agree with me that there is an urgent need for a more consistent | :39:18. | :39:21. | |
and effective screening and that the risk factor strategy by which we | :39:22. | :39:25. | |
have assessed this infection to date has failed to reduce the nulber of | :39:26. | :39:30. | |
incidences should be reviewdd? I agree and I am grateful to him for | :39:31. | :39:36. | |
speaking to me last night, `nd look forward to working with him on this | :39:37. | :39:40. | |
terrible illness, and indeed to join him in presenting this petition when | :39:41. | :39:46. | |
it comes along. I want to s`y to my right honourable friend, who is | :39:47. | :39:49. | |
going to answer this debate, who is not only my right honourabld friend | :39:50. | :39:52. | |
but also a real friend. What I have to say is not due in a disrdspectful | :39:53. | :40:00. | |
way to him, but I do have what can only be described as issues with the | :40:01. | :40:05. | |
Department of Health on this matter. I represented this issue to the | :40:06. | :40:11. | |
government of both complexions, and it has been an uphill, unrewarding | :40:12. | :40:18. | |
unloading experience. From `n adjournment debate by the rhght | :40:19. | :40:22. | |
honourable friend, a former Prime Minister, the former member for | :40:23. | :40:28. | |
Whitney, on the 9th of July 200 , I have dealt with five ministdrs, all | :40:29. | :40:33. | |
of whom have promised prompt action and progress, all of which have been | :40:34. | :40:37. | |
an acceptably slow, for reasons which I am the charity and the | :40:38. | :40:43. | |
families involved, and mothdrs to be, I think would find pretty hard | :40:44. | :40:47. | |
to understand in any objecthve examination. The campaign h`s been | :40:48. | :40:52. | |
pushing since 2003 for the dnriched culture medium test to be available, | :40:53. | :40:56. | |
and I would like my right honourable friend to note that the govdrnment | :40:57. | :41:00. | |
committed to making these tdsts available on the NHS from the 1st of | :41:01. | :41:05. | |
January 2014, following a mdeting that we had with Dan Boulter, that | :41:06. | :41:12. | |
then minister, the Chief Medical Officer, in December 2012, only to | :41:13. | :41:18. | |
-- for the government to do a U turn on the decision in the final weeks | :41:19. | :41:24. | |
of 2013. Despite these setb`cks and these dismal patterns of indecision, | :41:25. | :41:32. | |
I want to congratulate the group on all they have achieved on r`ising | :41:33. | :41:35. | |
awareness of this terrible `nd unnecessary infection since they | :41:36. | :41:40. | |
were founded in 1996, and ensuring that the issue is at least on the | :41:41. | :41:44. | |
agenda, even if they do nothing about it, the key decision lakers. | :41:45. | :41:49. | |
The charity has one overarching objective, to eradicate grotp B | :41:50. | :41:53. | |
strep in newborn babies, to achieve that objective, which is military in | :41:54. | :41:56. | |
its clarity and position thdy inform and support families affectdd by | :41:57. | :42:04. | |
group B strep, and push for improvement. The charity has | :42:05. | :42:07. | |
virtually single-handedly r`ised awareness of group B strep from | :42:08. | :42:12. | |
virtually nothing to one in ten of every new and expectant mothers | :42:13. | :42:22. | |
having heard bid -- in 2006, to one in five in 2016. Amazing th`t the | :42:23. | :42:26. | |
NHS does not routinely provhde information about it as part of | :42:27. | :42:30. | |
standard antenatal care, whhch makes it a significant feature for a small | :42:31. | :42:36. | |
charity to cover for an inexplicable shortcoming on the part of the | :42:37. | :42:40. | |
National Health service. From the very start they have pushed for | :42:41. | :42:44. | |
improvement to policy and practice, and I think they have done `n | :42:45. | :42:49. | |
extraordinarily good job. In my own view, the reason for this | :42:50. | :42:56. | |
shortcoming is that I think there is a fundamental disagreement between | :42:57. | :42:58. | |
doctors, and we all know wh`t that means. It is not clear to md why | :42:59. | :43:03. | |
ministers do not just simplx overrides this. Test would save the | :43:04. | :43:12. | |
agony of those involved. I know the government say they are comlitted to | :43:13. | :43:15. | |
finding a way forward, but ht is taking them a very long timd to get | :43:16. | :43:20. | |
there and neither I nor the charity are satisfied by the progress. As he | :43:21. | :43:28. | |
winds up today, could I ask him to give particular mention to group B | :43:29. | :43:37. | |
strep, and confirmation that they will be listened to in the future. | :43:38. | :43:42. | |
One other matter, to raise one point, the most wonderful young | :43:43. | :43:49. | |
constituent of mine, an adorable girl, Emily, aged 14, came to see me | :43:50. | :43:55. | |
at my surgery ten days ago with her mother. Emily is a miracle child who | :43:56. | :44:06. | |
survived two strains at the age of 18 months. I will be sending my | :44:07. | :44:09. | |
right honourable friend the details of her case and the wider c`se for | :44:10. | :44:14. | |
dealing with childhood strep, which needs to achieve greater | :44:15. | :44:20. | |
understanding. Strep is one of the top ten reasons children did. An | :44:21. | :44:24. | |
alarming number of children who have had a stroke are misdiagnosdd or are | :44:25. | :44:30. | |
sent home. Like all members of Parliament, there is no gre`ter | :44:31. | :44:33. | |
honour or privilege than we can have to raise the case of a child's story | :44:34. | :44:41. | |
on the floor of the House and how remarkable courage and survhval I | :44:42. | :44:44. | |
would be grateful if he would examine carefully the inforlation I | :44:45. | :44:47. | |
will be sending him from Emhly and her family. Thank you. I am deeply | :44:48. | :44:54. | |
honoured to participate in this debate on an issue which cotld not | :44:55. | :44:59. | |
be closer to my heart. I am grateful to the cross-party group on baby | :45:00. | :45:04. | |
loss for bringing this forw`rd. As we have heard, the loss of ` baby is | :45:05. | :45:08. | |
what every parent dreads. And those to whom it occurs at a provocatively | :45:09. | :45:15. | |
changed for ever, their livds scarred by unspeakable tragddy. The | :45:16. | :45:18. | |
year before I was elected I had no notion that I would ever have the | :45:19. | :45:21. | |
honour of being elected to represent the good people of North Ayrshire. | :45:22. | :45:27. | |
Because of my own horrific experience of stillbirth, I feel | :45:28. | :45:31. | |
profoundly that I use that experience to help shine a light on | :45:32. | :45:35. | |
the issue which is truly thd last taboo. For too long, too many of | :45:36. | :45:40. | |
those to whom this has happdned understandably did not feel able, | :45:41. | :45:45. | |
did not feel equal to the t`sk of speaking out about this isste, and | :45:46. | :45:50. | |
in turn, those who have no direct experience of this issue silply do | :45:51. | :45:53. | |
not know how to broach it and are very often surprised to find out how | :45:54. | :46:01. | |
prevalent stillbirth is across the UK. Around 3500 BBC shear across the | :46:02. | :46:11. | |
UK and another 3000 die shortly after birth. -- 3500 babies each | :46:12. | :46:17. | |
year. That is one baby everx hour and a half, the equivalent of 1 | :46:18. | :46:20. | |
jumbo jets crashing every ydar. It is inconceivable that this should | :46:21. | :46:27. | |
continue. But it will unless we remove the taboo and shine ` light | :46:28. | :46:31. | |
on this novel phenomenon and do all we can for the mums and dads of the | :46:32. | :46:37. | |
future and all the babies ydt to be born. It is sobering to think that | :46:38. | :46:42. | |
in the course of this debatd, somewhere in the UK, two more little | :46:43. | :46:50. | |
babies will have died, two families destroyed. It does not bear thinking | :46:51. | :46:56. | |
about. But think about it wd must. Yes, it is extremely diffictlt to | :46:57. | :47:00. | |
talk about this, but we havd a duty to all the babies who have been lost | :47:01. | :47:04. | |
and a duty to all those berdaved parents who are struggling to put | :47:05. | :47:09. | |
the pieces of their lives b`ck together. The fact is, in Scotland | :47:10. | :47:16. | |
34% of stillbirth is our babies at full pregnancy, and in Engl`nd that | :47:17. | :47:20. | |
figure is 33%. This is shocking when you consider that medics at all | :47:21. | :47:24. | |
levels will tell you that b`rring some terrible freak accident, no | :47:25. | :47:29. | |
baby who has survived up full pregnancy need die. -- a full | :47:30. | :47:35. | |
pregnancy. Not if the proper monitoring and procedures are in | :47:36. | :47:40. | |
place. And yet such babies to die. In Scotland some progress h`s been | :47:41. | :47:43. | |
made in recent years to redtce the incidences of stillbirth, btt we | :47:44. | :47:49. | |
still do not compare favour`bly with our European neighbours, across the | :47:50. | :47:54. | |
UK we still have a long way to go. I know, as many others do, thd horror | :47:55. | :48:00. | |
of losing a baby. My baby Kdnneth would have been seven years old this | :48:01. | :48:04. | |
Saturday. The very day when we reach the culmination of baby loss | :48:05. | :48:07. | |
awareness week. International pregnancy and infant | :48:08. | :48:17. | |
loss awareness Day, is a rax of light for all of our babies. When | :48:18. | :48:23. | |
children lose their parents, they are called orphans. When a husband | :48:24. | :48:28. | |
loses his wife, he is called a widow and when a wife loses a husband she | :48:29. | :48:33. | |
is called a widow. When pardnts choose their -- lose their child, | :48:34. | :48:37. | |
there is no name for it and the reason is, there are no words. It | :48:38. | :48:43. | |
goes against nature. And all those who knew and loved them, can share | :48:44. | :48:47. | |
memories such as the last holiday, the last Christmas, the last | :48:48. | :48:52. | |
important family milestone but it is not like that with stillbirths soak | :48:53. | :48:58. | |
people understandably don't know what to say, sometimes people are so | :48:59. | :49:01. | |
keen to avoid saying the wrong thing, that they see nothing at all. | :49:02. | :49:06. | |
I have heard reports of womdn after a stillbirths, crossing the note | :49:07. | :49:12. | |
from their labours, to avoid speaking to them such is thd anxiety | :49:13. | :49:16. | |
about saying the wrong thing because there is no right thing to say. | :49:17. | :49:22. | |
There simply are no words, just a deafening silence and a terrible | :49:23. | :49:26. | |
sense of being utterly isol`ted in consuming grief. Like so many | :49:27. | :49:32. | |
parents have lost their babhes, my husband and I wanted by the loss how | :49:33. | :49:38. | |
we expect our lives to be after five years of fertility treatment. We are | :49:39. | :49:43. | |
haunted by the potential life wiped away so cruelly and suddenlx. By the | :49:44. | :49:49. | |
avoidable. By the fact that all of avoidable. By the fact that all of | :49:50. | :49:54. | |
this grief and sense of waste was because the Southern General | :49:55. | :49:58. | |
Hospital in Glasgow, now called the Queen Elizabeth University Hospital, | :49:59. | :50:03. | |
made a series of basic errors. By the fact that this same hospital | :50:04. | :50:08. | |
pulled down the shutters and 46 and a half years refused to recognise | :50:09. | :50:12. | |
that any mistakes were at all. And to this day have still not done so. | :50:13. | :50:18. | |
And by the fact that this s`me hospital despite independent expert | :50:19. | :50:21. | |
flatly contradicting them, hnsist they did nothing wrong. And this | :50:22. | :50:27. | |
matters, it matters because this is an all too common story, and | :50:28. | :50:32. | |
demonstrate an unwillingness to openly engage in a learning process | :50:33. | :50:43. | |
when mistakes are made. And that shows a real culture, fear dven if | :50:44. | :50:48. | |
you cannot accept that mist`kes have been made. How many parents, go | :50:49. | :50:56. | |
through this horrific ordeal. As they are told this is just one of | :50:57. | :51:00. | |
those things as they are trxing to cope with the crushing weight of | :51:01. | :51:04. | |
grief. And bereavement care for parents is simply not good dnough. | :51:05. | :51:12. | |
Some have done very important work in this field, they underst`nd the | :51:13. | :51:15. | |
importance of listening to lother 's concerns and they found that all of | :51:16. | :51:19. | |
the mothers surveyed who had undergone a stillbirth, 45% of them | :51:20. | :51:23. | |
helped that something was wrong before problems were diagnosed yet | :51:24. | :51:28. | |
to many of these women were told that their concerns were unfounded, | :51:29. | :51:32. | |
sent home, only for their b`bies to die shortly after. Antenatal care | :51:33. | :51:39. | |
must be a collaborative process mother 's concerns must be paid | :51:40. | :51:43. | |
attention to, women know thdir own bodies. We must have better | :51:44. | :51:47. | |
monitoring of pregnancies and particularly those women at risk of | :51:48. | :51:55. | |
experienced stillbirth or ndar Nato -- neonatal birth. The truth is we | :51:56. | :52:00. | |
are failing to realise any babies at danger. And we need more research to | :52:01. | :52:04. | |
help us tackle this issue. The more we know about why the babies are | :52:05. | :52:08. | |
dying, the warm more we can mitigate for this happening. And it hs very | :52:09. | :52:13. | |
important that if mistakes `re made and remember one in three | :52:14. | :52:18. | |
stillbirths are full-term b`bies, health boards and trusts should not | :52:19. | :52:23. | |
be investigating themselves, for investigations to be credible they | :52:24. | :52:28. | |
have to be independent. Carried out by people outside a situation. That | :52:29. | :52:33. | |
is the right and proper thing to do to challenge this culture of | :52:34. | :52:37. | |
secrecy. Where it is believdd to be merited, we should in England allow | :52:38. | :52:42. | |
coroners to investigate stillbirths so that errors in care can be | :52:43. | :52:46. | |
addressed where they have occurred and in Scotland is the equivalent | :52:47. | :52:51. | |
would be a fatal accident enquiring. I know these are not straightforward | :52:52. | :52:56. | |
or easy asks but such an investment now will mean that has expertise | :52:57. | :53:00. | |
grows and intelligence is g`thered, increasing need for such me`sures | :53:01. | :53:08. | |
will increase over time. . She also agree that local authorities need to | :53:09. | :53:12. | |
take this into account on the registration of deaths. I h`ve heard | :53:13. | :53:15. | |
cases where people have gond to register deaths, the same place | :53:16. | :53:21. | |
where you register births. @nd that was very upsetting for thosd | :53:22. | :53:26. | |
parents. I take on board was the honourable gentleman says is an | :53:27. | :53:28. | |
extremely traumatic experience to register the death, at the same | :53:29. | :53:34. | |
place where people register births, it simply makes the spirit `bout | :53:35. | :53:40. | |
dramatic. In my own case, mx notes recorded that I was asked if I | :53:41. | :53:44. | |
wanted a postmortem performdd on my son. My notes did not record who | :53:45. | :53:50. | |
asked me this question, what information I was given, or when I | :53:51. | :53:56. | |
was asked this question. I was so drowsy on morphine intensivd care, | :53:57. | :54:00. | |
since my liver have ruptured after my body tried for 48 hours to | :54:01. | :54:03. | |
deliver my baby naturally and the hospital repeatedly refused to | :54:04. | :54:09. | |
perform a C section, I have no idea if I was asked this question. Why | :54:10. | :54:14. | |
was the common session not properly recorded in my notes. It is all | :54:15. | :54:19. | |
pretty suspicious as it feeds into the sense of cover-up and evasion in | :54:20. | :54:26. | |
hospitals in such circumstances I am delighted that we are finally | :54:27. | :54:30. | |
putting this very important issue firmly on the political agenda and | :54:31. | :54:35. | |
that is where it must stay. For those of us in the chamber `nd those | :54:36. | :54:39. | |
of us outside the chamber, `ll of the grieving parents watching today, | :54:40. | :54:44. | |
it is too late to save our little boys and girls. But there are little | :54:45. | :54:48. | |
boys and girls, other peopld thinking of starting their own | :54:49. | :54:52. | |
families, for whom it is not too late. It is our duty to do `ll that | :54:53. | :54:58. | |
we can to ensure that these little boys and girls and to the world as | :54:59. | :55:04. | |
safely as possible. It is otr duty to commit ourselves to the cause for | :55:05. | :55:08. | |
our sakes and for the sakes of all of the babies that will be lost and | :55:09. | :55:18. | |
never forgotten. Thank you Lr Deputy Speaker, it is the honour to | :55:19. | :55:21. | |
co-chair the all Parliament`ry group on baby loss, and to listen to the | :55:22. | :55:26. | |
member who is an active member of the group. I would just likd to | :55:27. | :55:30. | |
share some statistics, some of which have been shared with the house but | :55:31. | :55:34. | |
I think repetition is important in this case so we have a real | :55:35. | :55:38. | |
understanding of the scale. One in four pregnancies ends in | :55:39. | :55:43. | |
miscarriage. One in 200 babhes is stillborn in the UK. Around 15 | :55:44. | :55:48. | |
babies died per day, either before, during or shortly after birth in the | :55:49. | :55:53. | |
UK. There are around 3500 stillbirths every year in the UK. | :55:54. | :55:59. | |
Half of all is to births ard said to be preventable. The rate sthllbirth | :56:00. | :56:04. | |
in the UK is higher than Poland and Estonia. The lives of 2000 babies | :56:05. | :56:10. | |
could be saved every year if the UK could match the best surviv`l rates | :56:11. | :56:17. | |
in Europe. Mr Deputy Speaker, it is I think a great honour to follow all | :56:18. | :56:21. | |
of those honourable and right Honourable members, who havd shared | :56:22. | :56:25. | |
such harrowing accounts of what has happened to them. I would lhke in | :56:26. | :56:32. | |
particular to praise, I did want to appear patronising in anywax, how | :56:33. | :56:35. | |
proud I am of the honourabld member. And a good friend of mine for | :56:36. | :56:40. | |
raising that account in such a powerful and emotional way. I want | :56:41. | :56:46. | |
to make absolutely clear th`t I genuinely believe, that we `re doing | :56:47. | :56:50. | |
something very special in this chamber today because we ard | :56:51. | :56:53. | |
breaking a silence, breaking it to boo and we are showing parents up | :56:54. | :56:58. | |
and down this country that ht is OK to talk about the babies and the | :56:59. | :57:02. | |
children that we have lost. In fact it is more than OK, where wd feel we | :57:03. | :57:07. | |
are able to, we should. And I had that people across this country seat | :57:08. | :57:10. | |
that in the mother of all parliaments there is no subject that | :57:11. | :57:13. | |
we won't abate or talk about if it is going to improve the livds of | :57:14. | :57:21. | |
others. I would be delighted to I would like to congratulate him also | :57:22. | :57:25. | |
to bring forward this debatd and this point about inspiring people to | :57:26. | :57:30. | |
come forward. Two constituent of mine, that is what happened to them, | :57:31. | :57:34. | |
their son was born after 23 weeks and six days. He lived for two and a | :57:35. | :57:41. | |
half days further. Had he not live those are the two and a half days, | :57:42. | :57:46. | |
he would have been considerdd a miscarriage rather than a short | :57:47. | :57:51. | |
life. Does he consider, you cannot measure grief in how is, in days, in | :57:52. | :57:57. | |
weeks. Does he not consider, in these days, we should reconsider the | :57:58. | :58:02. | |
time, the criteria that we `pply for when a life is considered a life? | :58:03. | :58:08. | |
Yes, I thank my honourable friend fray much for this contribution | :58:09. | :58:12. | |
This is something that the `ll Parliamentary party group is looking | :58:13. | :58:16. | |
at. He's absolutely right when he says how important it is th`t those | :58:17. | :58:20. | |
who do suffer what is termed a miscarriage but let us be clear it | :58:21. | :58:25. | |
is a life and a baby. Because of our abortion laws had all sorts of rules | :58:26. | :58:29. | |
and regulations, where not `llowed to register that light and give that | :58:30. | :58:35. | |
baby name. It is something that we are looking at. I would be delighted | :58:36. | :58:42. | |
to. The following on this point if I may, the baby was born at 23 and a | :58:43. | :58:47. | |
half weeks, sadly she had not lived, if she had she would be rushed | :58:48. | :58:52. | |
straight to the baby care unit, the special care baby unit. But because | :58:53. | :58:58. | |
she was born dead, although I always class as a stillbirth. Officially it | :58:59. | :59:02. | |
was put down as a miscarriage, and I was not given a death certificate. | :59:03. | :59:06. | |
It was another trauma on top of the trauma I have already gone through, | :59:07. | :59:11. | |
because then on paper, it rdad miscarriage, she was blessed by the | :59:12. | :59:17. | |
chaplain, went on to have a funeral which I felt was right. I hdld in my | :59:18. | :59:22. | |
arms, she was a fully formed baby. I think it does have two addrdssed. | :59:23. | :59:29. | |
Indeed, I absolutely agree `nd the honourable lady, for Washington and | :59:30. | :59:33. | |
Sutherland East. I would also like to thank you for the huge role that | :59:34. | :59:37. | |
you play on the all Parliamdntary party group and indeed on the | :59:38. | :59:40. | |
formation of the group. Comhng back to the point on the importance of | :59:41. | :59:46. | |
today, we are really lucky `nd I hope you agree, we have the best job | :59:47. | :59:51. | |
in the world. I believe that where we can, we have a duty and | :59:52. | :59:54. | |
responsibility to take the clearances. Experiences to lake a | :59:55. | :00:05. | |
lot and the lives of others better and it through this debate, we can | :00:06. | :00:10. | |
ensure, that we can in the fullness of time reduce the stillbirth rate | :00:11. | :00:15. | |
and neonatal death rate by 40%, then that is an incredible target to aim | :00:16. | :00:20. | |
for. And we can save the lives of 2000 babies. I congratulate him and | :00:21. | :00:29. | |
other members for being so brave and speaking out in this debate. Friends | :00:30. | :00:33. | |
of mine who were due to havd twin sadly lost one of their twins due to | :00:34. | :00:38. | |
twin to twin trance fusion syndrome, and I'll see agree that it hs so | :00:39. | :00:42. | |
important that all of the after care for parents who have lost b`bies | :00:43. | :00:46. | |
that we consider the very dhfferent nature, of four example multiple | :00:47. | :00:52. | |
births and ensure, that card is tailored appropriately to every | :00:53. | :00:58. | |
circumstance. Absolutely and the honourable lady makes a verx good | :00:59. | :01:02. | |
point. There are charities that do incredible work in this field | :01:03. | :01:05. | |
indeed. One of my honourabld friend is raised this earlier too. I would | :01:06. | :01:13. | |
be delighted to. The thank xou, I just wanted to follow on from that | :01:14. | :01:17. | |
question with regard to mothers who experience late term baby loss, and | :01:18. | :01:24. | |
the treatment that they recdive in hospitals. Very often they `re kept | :01:25. | :01:28. | |
on maternity wards which can be incredibly traumatic so the point | :01:29. | :01:31. | |
about tailoring carer and stpport for parents who lose their children, | :01:32. | :01:38. | |
is remaining on the maternity ward, the most suitable space for people? | :01:39. | :01:44. | |
I thank the honourable lady and I will come onto that honourable | :01:45. | :01:48. | |
point, I would just like to share my own personal experience. Ag`in in | :01:49. | :01:54. | |
the spirit of showing peopld outside of this chamber, we found ott at our | :01:55. | :02:01. | |
20 week scan that our son h`d a very rare chromosomal disorder c`lled | :02:02. | :02:06. | |
Edwards syndrome. The reality is, that is unhelpfully describdd as a | :02:07. | :02:09. | |
condition that is not compatible with life. We knew throughott that | :02:10. | :02:15. | |
the most likely outcome would be stillbirth at some point. Btt our | :02:16. | :02:20. | |
son was an incredible littld fighter, he went full term, over 40 | :02:21. | :02:25. | |
weeks, he lost his life in the last few moments of labour at Colchester | :02:26. | :02:32. | |
General Hospital. But I wanted to pick up on the honourable l`dy's | :02:33. | :02:36. | |
point. In Colchester we havd a fantastic hospital that has a | :02:37. | :02:40. | |
special bereavement suite c`lled the Rosemary suite where we got to spend | :02:41. | :02:44. | |
some really special time, wd knew what the likely outcome sadly was | :02:45. | :02:45. | |
going to be. I got to stay there overnight with | :02:46. | :02:59. | |
my wife, we had a cold cot so we could have a lot of cuddles and we | :03:00. | :03:03. | |
got to stay here with them. I completely agree with you, we | :03:04. | :03:07. | |
brought this debate in Novelber last year on bereavement care in | :03:08. | :03:10. | |
maternity units because berdavement suites are so important. Thdre | :03:11. | :03:13. | |
should never be any excuse hn this country within the NHS for lother | :03:14. | :03:19. | |
and father or mother who has lost a baby to go back onto water with a | :03:20. | :03:28. | |
crying babies and happy famhlies and balloons because it is not | :03:29. | :03:33. | |
appropriate. What you need hn that moment is peace and quiet to come to | :03:34. | :03:37. | |
terms with the tragedy that has just happened. I would like to | :03:38. | :03:42. | |
congratulate him and the Honourable lady and all others who havd been | :03:43. | :03:46. | |
involved in this group. When my child died to three years ago at | :03:47. | :03:51. | |
term, we did not have the bereavement suite in Leicester. We | :03:52. | :03:56. | |
do now. The issue is not just the ability to be able to grievd and be | :03:57. | :04:02. | |
with your child, it is also getting expert help and counselling at that | :04:03. | :04:06. | |
moment. Because my wife was told she would never have children again | :04:07. | :04:11. | |
after the stillbirth, we have had two children subsequently. Ht is so | :04:12. | :04:15. | |
important to get that advicd at that time, does he agree? Yes, of course | :04:16. | :04:20. | |
I agree and I will come onto this point later in my speech. From that | :04:21. | :04:25. | |
debate in November on bereavement care in maternity units, I know the | :04:26. | :04:31. | |
honourable member and I werd taken aback with the number of people | :04:32. | :04:35. | |
across the country who were sharing their stories with us that got in | :04:36. | :04:40. | |
touch. And at that point, wd sat down, during a finance bills are | :04:41. | :04:45. | |
around 1:30am with the then care quality Minister, the member for | :04:46. | :04:53. | |
Ipswich, alongside my friend who is not quite in her place, and the | :04:54. | :04:58. | |
honourable lady for Washington and Sunderland East, and we thotght | :04:59. | :05:01. | |
this is a far bigger issue than just bereavement suites. And babx loss is | :05:02. | :05:05. | |
a whole subject that needs addressing. We were surprisdd there | :05:06. | :05:13. | |
was not a group already looking at this area. So the Parliamentary | :05:14. | :05:16. | |
group was formed in Februarx and I'm very proud of the work we h`ve been | :05:17. | :05:19. | |
done so far, working with some amazing charities across thhs | :05:20. | :05:26. | |
country. I cannot agree -- H cannot begin to name some because H would | :05:27. | :05:30. | |
have to name them all. The charities that are large and do amazing | :05:31. | :05:34. | |
fundraising through to the groups of just a handful of people who get | :05:35. | :05:35. | |
together with each other in a local together with each other in a local | :05:36. | :05:46. | |
pub or village hall and knit little pieces of clothing for babids who | :05:47. | :05:49. | |
are premature and sadly losd their lives. It means so much that so many | :05:50. | :05:53. | |
people want to make a difference. I cannot let this speech code by | :05:54. | :06:00. | |
without also referencing thd support of the Speaker of the House, not | :06:01. | :06:05. | |
allowing us kindly to use hhs allowing us kindly to use hhs | :06:06. | :06:10. | |
apartments for the reception yesterday, and very kindly drawing | :06:11. | :06:17. | |
baby loss awareness week, and yesterday what should have been my | :06:18. | :06:22. | |
son's second birthday, to ask a question on this subject at PMQ 's. | :06:23. | :06:24. | |
And to raise this issue in front of And to raise this issue in front of | :06:25. | :06:27. | |
millions of people and the country's media. I think this is a debate . Of | :06:28. | :06:36. | |
course. I know he does not want to name individual charities that | :06:37. | :06:41. | |
Sadlers do a great job. One of the issues that has been raised is that | :06:42. | :06:46. | |
one of the most powerful thhngs that they can do is put parents hn touch | :06:47. | :06:51. | |
with parents, people who have gone through their expenses can share. | :06:52. | :06:55. | |
Does he agree that that is ` very powerful thing to do in terls with | :06:56. | :06:59. | |
this, a lot of people can elpathise with what people are going through | :07:00. | :07:03. | |
but unless you have gone through it does, it is difficult to understand. | :07:04. | :07:08. | |
He raises an incredibly good point. In the run-up to pregnancy we have | :07:09. | :07:12. | |
groups like NTT and prenatal classes, -- MCT, I agree and the | :07:13. | :07:18. | |
friends that we have made who have gone through similar experidnces, | :07:19. | :07:24. | |
but you feel you can go through this with them because they have gone to | :07:25. | :07:27. | |
the same things and that is right powerful. There is a role that's | :07:28. | :07:32. | |
charities and the NHS can play in where parents feel able to, putting | :07:33. | :07:36. | |
them in touch with other parents who may want to talk about their | :07:37. | :07:40. | |
experience. I want to talk `bout the government targets. I know sometimes | :07:41. | :07:45. | |
the government gets hard tile in relation to the NHS. In this area, | :07:46. | :07:49. | |
this is something that they have accepted the premise of what we are | :07:50. | :07:52. | |
arguing for. I will the first arguing for. I will the first | :07:53. | :07:57. | |
meeting with the right honotrable friend, the number four Ipswich as | :07:58. | :08:02. | |
care quality Minister, and ht was like pushing against an open door. | :08:03. | :08:08. | |
We now have these very firm commitments, reduction by 20% by the | :08:09. | :08:12. | |
end of this Parliament, and 50% by 2030. It is our job as an all-party | :08:13. | :08:17. | |
Parliament regrouped to hold the government's speech to the fire and | :08:18. | :08:21. | |
make sure make sure they ard working towards those and also that we start | :08:22. | :08:29. | |
to see results. I could not let this debate go by without talking about | :08:30. | :08:32. | |
some of these issues that the charities have raised with le, I | :08:33. | :08:35. | |
will firstly touch on prevention and then talk about bereavement. | :08:36. | :08:39. | |
Research in this area is absolutely vital. And as my good friend the | :08:40. | :08:44. | |
honourable member for edits preset, around 50%, in fact 46% of | :08:45. | :08:58. | |
stillbirth are unexplained. So why are South Asian women 60% more | :08:59. | :09:01. | |
likely to have a stillbirth Chris Maguire? -- why is there a disparity | :09:02. | :09:14. | |
between some part of the UK, 4. % in some areas and 7.1% in another area. | :09:15. | :09:21. | |
That is a 25% variation. We need to look at multiple pregnancies, as I | :09:22. | :09:26. | |
know my honourable friend h`s mentioned. We need to look `t lower | :09:27. | :09:31. | |
income families, look at our European counterparts and sde why | :09:32. | :09:34. | |
they are getting its own right and see how we can implement those | :09:35. | :09:39. | |
measures here in the UK. -- C White they are getting it so right. A | :09:40. | :09:40. | |
number of members have menthoned number of members have menthoned | :09:41. | :09:46. | |
public and they are right to do so, whether it is maternal age, smoking, | :09:47. | :09:54. | |
alcohol drugs. We could achheve a 7% reduction if no women smoked during | :09:55. | :09:58. | |
pregnancy. This is a huge t`rgets to achieve. We can do a lot of work on | :09:59. | :10:02. | |
smoking cessation around prdgnancy. The Bay City, around 12% -- in | :10:03. | :10:11. | |
obesity, we could reduce it by 2% if no mothers were overweight or a | :10:12. | :10:14. | |
piece. There is work we can do around in powering women and mothers | :10:15. | :10:22. | |
to be. In initiatives like count the kicks, nobody knows their body like | :10:23. | :10:26. | |
a mother. If they feel something is wrong, there is a good chance there | :10:27. | :10:30. | |
is something wrong. When yot pick up the phone to the hospital or to your | :10:31. | :10:34. | |
GP and it is dismissed as, do not worry, it is not important, no, get | :10:35. | :10:38. | |
it checked out. If there is nothing to worry about, great. All those | :10:39. | :10:42. | |
times we do not get it checked out and something terrible happdns, we | :10:43. | :10:46. | |
have to hold ourselves responsible for that. Some of the innov`tion | :10:47. | :10:49. | |
that is happening around in powering women, for example, these f`ntastic | :10:50. | :10:58. | |
folders are being sponsored by Teddy's Wish, anyone who has had a | :10:59. | :11:01. | |
baby knows that you get these maternal notes that you havd to | :11:02. | :11:08. | |
carry around. These folders that these maternity notes go income it | :11:09. | :11:11. | |
encourages mothers and fathdrs to look out for the signs, and when to | :11:12. | :11:18. | |
pick up the phone and go to your GP and go to the hospital. This | :11:19. | :11:21. | |
innovation is what we should be looking at. Investigation and | :11:22. | :11:24. | |
reporting. It is so important that we learn the lessons from every | :11:25. | :11:28. | |
single stillbirth and neonatal death. The days of covering things | :11:29. | :11:33. | |
up and treating it as unexplained, these things happen, I am tdrribly | :11:34. | :11:36. | |
sorry, it is not accidental and we have to learn from every single one. | :11:37. | :11:40. | |
I am pleased that the government has put significant amount of money into | :11:41. | :11:44. | |
setting up a system of reporting so we can absolutely investigate and | :11:45. | :11:47. | |
learn from every single stillbirth and neonatal death. My honotrable | :11:48. | :11:54. | |
friend mentioned postmortems. She is absolutely right to do so. So many | :11:55. | :12:00. | |
parents do not get offered the opportunity to have a postmortem. | :12:01. | :12:03. | |
What parent would want that opportunity? But the one ovdrriding | :12:04. | :12:06. | |
factor for parents who lose children is often that they want to know why. | :12:07. | :12:10. | |
They want to have an understanding of how it happened, and why it | :12:11. | :12:14. | |
happened and how we can makd sure it does not happen again. So m`ny | :12:15. | :12:18. | |
parents would opt for a postmortem so that they know that rese`rch can | :12:19. | :12:26. | |
Help others. And if clinici`ns are not asking, often with good | :12:27. | :12:29. | |
intentions because it is not an easy question, but we have to ask that | :12:30. | :12:33. | |
question because we need to get that research done to cut our sthllbirth | :12:34. | :12:41. | |
rates. I cannot member which member mentioned late stage pregnancy | :12:42. | :12:46. | |
scanning. In this country, we do not scan past 20 weeks. We scan at 2 | :12:47. | :12:52. | |
weeks and 20 weeks. There is no routine scanning past that `nd I | :12:53. | :12:56. | |
find that quite bizarre, if I am honest. About halfway through your | :12:57. | :13:00. | |
pregnancy you get an abnorm`lity scan, but after that, you are not | :13:01. | :13:04. | |
seen again in terms of us c`n until you arrive at the hospital hn | :13:05. | :13:11. | |
labour. If we were to look `t other countries across the world, but in | :13:12. | :13:15. | |
particular let in Europe who do scans at 36 weeks or Doppler scans, | :13:16. | :13:20. | |
there are huge implements wd can make in that area. I want to make | :13:21. | :13:29. | |
one point clear. Around prevention, the NHS is brilliant and whdre we | :13:30. | :13:32. | |
get it right in this countrx, we really get it right. The problem is | :13:33. | :13:35. | |
the level of inconsistency `cross the NHS in the UK. And part of this | :13:36. | :13:38. | |
work, and I know the Secret`ry of work, and I know the Secret`ry of | :13:39. | :13:42. | |
State and the Minister will agree when I say this, is that we have | :13:43. | :13:45. | |
some of the best care in thd world but the important point is that is | :13:46. | :13:49. | |
repeated in every hospital `nd every maternity unit in the country. | :13:50. | :13:54. | |
Having that consistent level of care so whichever hospital or GP you are | :13:55. | :13:57. | |
in, you will get the same ldvel of care and consistent advice. Even if | :13:58. | :14:04. | |
we do manage to achieve our target, even if we do half our stillbirth | :14:05. | :14:10. | |
rate, match our European counterparts and reduce our | :14:11. | :14:14. | |
stillbirth rate by 50%, that is still going to mean somewhere | :14:15. | :14:18. | |
between 1500 and 2500 parents going through this personal tragedy every | :14:19. | :14:24. | |
year. That is why as part of the all-party Parliamentary grotp, we | :14:25. | :14:26. | |
put as important an emphasis on bereavement. I have talked `bout | :14:27. | :14:32. | |
consistency of care across the NHS and is very much feeds into that | :14:33. | :14:36. | |
point. We should have consistency of bereavement pathway care across the | :14:37. | :14:40. | |
NHS as well. It is important that we look at things like training for | :14:41. | :14:44. | |
staff. I know the Secretary of State and the Minister has put huge amount | :14:45. | :14:46. | |
of funding into training as part of of funding into training as part of | :14:47. | :14:53. | |
this plan to reduce stillbirth rates significantly because trainhng is | :14:54. | :14:57. | |
to my honourable friend for his part to my honourable friend for his part | :14:58. | :15:01. | |
in securing this debate. I have mentioned already my constituents | :15:02. | :15:04. | |
who had the nightmare of losing their baby boy, I asked the mother | :15:05. | :15:09. | |
to write to me to set out what precisely had happened and one of | :15:10. | :15:12. | |
the most harrowing part of `n already harrowing story was when she | :15:13. | :15:17. | |
told me that at the hospital, she was not given, she and her husband | :15:18. | :15:20. | |
were not allowed to stay with the little boy for long. They wdre | :15:21. | :15:24. | |
pressured to leave. And when to leaving the baby boy, she w`nted to | :15:25. | :15:29. | |
go back to give her last goodbye, she was refused, she collapsed to | :15:30. | :15:34. | |
the floor, and the officials around her said, that if she did not get | :15:35. | :15:39. | |
up, she would have to go in a wheelchair or a stretcher. @s it was | :15:40. | :15:46. | |
time to go. Good God. Does ly honourable friend agree that | :15:47. | :15:47. | |
kindness costs nothing, and there is kindness costs nothing, and there is | :15:48. | :15:50. | |
a duty on anyone whether in the NHS or in the police, to make stre that | :15:51. | :15:55. | |
they are dealing with parents in this situation, that they do it with | :15:56. | :15:58. | |
kindness and that is very mtch part of the way they behaved? Yes, she | :15:59. | :16:05. | |
raises a point and I only whsh that raises a point and I only whsh that | :16:06. | :16:09. | |
the disgraceful behaviour and storage she has related to le was | :16:10. | :16:15. | |
unique but it is not. Storids I have read and personal testimony I have | :16:16. | :16:19. | |
heard sadly echoed those experiences. I think this is exactly | :16:20. | :16:24. | |
what we need to address. Yot are quite right, this is why tr`ining is | :16:25. | :16:27. | |
so important and we have midwives and clinicians trained around | :16:28. | :16:32. | |
bereavement. Language to usd, what not to say, I will not even repeat | :16:33. | :16:34. | |
some of the things that are set to some of the things that are set to | :16:35. | :16:43. | |
parents who aren't -- who are grieving. In our case it was not a | :16:44. | :16:46. | |
huge shock but for many pardnts this is something that has happened | :16:47. | :16:49. | |
instantly almost and I had no idea this was coming. They are are at the | :16:50. | :16:54. | |
most emotionally fragile period in most emotionally fragile period in | :16:55. | :16:58. | |
their life and it costs nothing to act with kindness, empathy `nd | :16:59. | :17:01. | |
compassion. I would like to think that we can reach a point where | :17:02. | :17:05. | |
those are things that are rtnning through every maternity unit in a | :17:06. | :17:08. | |
country and an over vast jollity it is, but where we have -- I know the | :17:09. | :17:15. | |
vast majority it is, but whdre it is not, we have to change this. We have | :17:16. | :17:21. | |
to have a bereavement suite in every hospital in the country, we have to | :17:22. | :17:24. | |
have bereavement trained midwives in every hospital in the country, we | :17:25. | :17:28. | |
need those gynaecology trained counsellors in every maternhty unit | :17:29. | :17:32. | |
in the country. And we also need that ongoing mental health support. | :17:33. | :17:33. | |
The time at which you leave the The time at which you leave the | :17:34. | :17:37. | |
hospital is not the end of xour grief. For many people it is just | :17:38. | :17:42. | |
the start. When it comes to future pregnancies, that can be ond of the | :17:43. | :17:43. | |
most traumatic pregnancies because most traumatic pregnancies because | :17:44. | :17:46. | |
you are thinking, from the day you will find that you are pregnant to | :17:47. | :17:50. | |
the day you have got a crying baby in your arms, is this going to | :17:51. | :17:53. | |
happen again? What mental hdalth support is available? In sole parts | :17:54. | :17:58. | |
other parts, it simply is not. And other parts, it simply is not. And | :17:59. | :18:04. | |
finally, I just want to touch on two other points. One is relationship | :18:05. | :18:11. | |
support. We know that betwedn 8 and 90% of relationships break tp after | :18:12. | :18:14. | |
social cost as well so that mental social cost as well so that mental | :18:15. | :18:19. | |
health support is so import`nt. I also think, and partly the reason | :18:20. | :18:23. | |
why I am co-chair of this Parliamentary group is that the | :18:24. | :18:26. | |
voice of fathers has to be heard as well. The father that feel that they | :18:27. | :18:30. | |
have to act as a rock. But hn many cases we were there as well, | :18:31. | :18:34. | |
witnessing it and there is nothing, there is nothing, no experidnce in | :18:35. | :18:41. | |
my view, worse than seeing xour wife gives birth to a lifeless b`by. It | :18:42. | :18:45. | |
is something that never leaves you. And every single day I think about | :18:46. | :18:49. | |
my son, I think about what he would have been like yesterday on his | :18:50. | :18:53. | |
second birthday, I imagine ` small boy running around our housd, | :18:54. | :18:57. | |
causing havoc, winding up hhs sisters. It is not to be. Btt every | :18:58. | :19:01. | |
single day you live in that grief. Fathers need support to. | :19:02. | :19:11. | |
This is a hugely exciting thme for us because the opportunity for | :19:12. | :19:16. | |
change is enormous, the APPG is making enormous progress and work we | :19:17. | :19:25. | |
have done already vision documents, and what we have achieved shnce | :19:26. | :19:28. | |
there be working with these magnificent charities all across the | :19:29. | :19:32. | |
country, with individual spdeding in their personal experiences, has been | :19:33. | :19:38. | |
incredible. And this is just the beginning of this journey. This is | :19:39. | :19:42. | |
just the point that we have set our vision and aspiration and what we | :19:43. | :19:44. | |
want to achieve and I know that pushing against an open door with a | :19:45. | :19:47. | |
government, they want to achieve these targets to. I just want to | :19:48. | :19:55. | |
send one final message to every single parent that is bereaved up | :19:56. | :19:58. | |
and down the country and we care and we are going to keep talking about | :19:59. | :20:02. | |
it and were not get it stopped talking about it until we rdduce our | :20:03. | :20:06. | |
stillbirth rate and most importantly that we have the best quality | :20:07. | :20:10. | |
bereavement care in the world, thank you. Thank you Mr Deputy Spdaker and | :20:11. | :20:17. | |
it is a pleasure to follow the honourable member for Colchdster, is | :20:18. | :20:21. | |
excellent and passion contrhbution. Of course this is such a sensitive | :20:22. | :20:27. | |
and important subject and I want to congratulate the honourable members | :20:28. | :20:29. | |
for securing this debate at this very important week. And for | :20:30. | :20:35. | |
speaking about their own personal experiences. I also want to pay | :20:36. | :20:40. | |
tribute, to the very brave honourable members, who share their | :20:41. | :20:44. | |
personal experiences, with such eloquence today. My honourable | :20:45. | :20:52. | |
friend, the member for Lewisham Deptford, and North Ayrshird and | :20:53. | :20:56. | |
Arran, and my very good honourable friend, the member for Washhngton | :20:57. | :21:03. | |
and Sunderland West. In Hull, the levels of stillbirth and neonatal | :21:04. | :21:06. | |
death are higher than the n`tional average and there is so much more as | :21:07. | :21:09. | |
we have heard already that needs to be done but I want to put on record | :21:10. | :21:13. | |
my tribute to the excellent work of the hull and East Yorkshire route in | :21:14. | :21:20. | |
supporting parents and I also but to the trust under the inspirational | :21:21. | :21:26. | |
readership -- leadership Fr`ncine Bates. But today I want to go back | :21:27. | :21:36. | |
to the issue, about injustice. We know that the trauma of the loss of | :21:37. | :21:40. | |
a baby can also be compounddd by what happens next. And I want to | :21:41. | :21:47. | |
tell you the story of my constituents, my Cantina Trow Hill. | :21:48. | :21:51. | |
Who came to see me to tell le about what had happened to them. They | :21:52. | :21:55. | |
explained that their baby Whlliam, had very sadly died in 1994, a long | :21:56. | :22:02. | |
time ago. And they had been told at the time that when he was cremated | :22:03. | :22:09. | |
there would be no Ashes. Many, many years later, Tina discovered that | :22:10. | :22:14. | |
baby William's caches had in fact been retained, never been rdturned | :22:15. | :22:19. | |
to her, and somebody had sc`ttered them without her knowledge. This was | :22:20. | :22:26. | |
very sad and bewildering. Why would somebody do this. It soon bdcame | :22:27. | :22:31. | |
very apparent that this was not a very sad one-off incident. Tina has | :22:32. | :22:35. | |
worked relentlessly in Hull and the wider Hull area to help manx other | :22:36. | :22:40. | |
families who have also discovered that their baby 's ashes were either | :22:41. | :22:44. | |
not return to them or scattdred without their knowledge, or there is | :22:45. | :22:47. | |
still a mystery as to where the ashes are now. She, set on, the | :22:48. | :22:59. | |
local ashes group, it now h`s 4 0 members. She has discovered that | :23:00. | :23:03. | |
many families were told that there would be no Ashes when their baby | :23:04. | :23:07. | |
was cremated, many families were told this by clinicians and nurses | :23:08. | :23:12. | |
in the NHS, many families now have discovered that those ashes were | :23:13. | :23:18. | |
scattered. Over 50 sets of `shes are still held by the co-operathve | :23:19. | :23:24. | |
funeral service, and have not been returned to families. There are | :23:25. | :23:28. | |
cases coming to light where babies appear to have been transported to | :23:29. | :23:31. | |
the crematorium without the use of an undertaker. And Tina herself has | :23:32. | :23:39. | |
helped families submit forms to the local authority, seeking information | :23:40. | :23:43. | |
about what happened to thosd babies. She submitted over 50 such requests | :23:44. | :23:50. | |
so far. And it is quite cle`r now that this has not just happdned in | :23:51. | :23:55. | |
Hull but up and down the cotntry, it has happened in Scotland and in | :23:56. | :24:00. | |
Shrewsbury. And is Rosebery, the local authority rightly, held an | :24:01. | :24:03. | |
enquiring to find out what had happened and to get those answers | :24:04. | :24:11. | |
for local families. So in Htll, Tina and I decided that we would see Hull | :24:12. | :24:16. | |
City Council and asked run independent enquiring just `s they | :24:17. | :24:20. | |
had had in Shrewsbury and while initially sympathetic, the Council | :24:21. | :24:25. | |
decided no. They wouldn't bd willing to hold such an enquiring. We | :24:26. | :24:33. | |
challenge them on this, sayhng it wasn't just OK for the local | :24:34. | :24:38. | |
authority to investigate itself But no, they said they weren't willing | :24:39. | :24:43. | |
to have that local enquiring. So I raised it with the previous Prime | :24:44. | :24:47. | |
Minister David Cameron. And I asked him what he thought about it and he | :24:48. | :24:52. | |
expressed to me that actually, it must be dreadful not to know what | :24:53. | :24:55. | |
has happened to your baby 's ashes and something should be dond. | :24:56. | :25:00. | |
Eventually Tina and I went to see the Justice Secretary, the Right | :25:01. | :25:04. | |
Honourable member for Surrex Heath. And I think he was genuinelx moved | :25:05. | :25:12. | |
by Tina's plight, and the m`ny families in Hull who did not know | :25:13. | :25:17. | |
what had happened. Tina madd it very clear to the Justice Secret`ry, what | :25:18. | :25:20. | |
she wanted to see was a loc`l enquiring to get the answers to what | :25:21. | :25:27. | |
had happened. And on the 10th of May the Justice Secretary wrote on Baha | :25:28. | :25:30. | |
Provencal, Secretary of State for Health and the Secretary of State | :25:31. | :25:35. | |
for the Department for Commtnities and Local Government and sahd this. | :25:36. | :25:40. | |
"I'm Pleased to be a will to tell you that my fellow secretarhes of | :25:41. | :25:44. | |
State at the Department of Health and communities and local government | :25:45. | :25:49. | |
have agreed with me that thdre is a need for a historic investigation | :25:50. | :25:53. | |
into the practices relating to infant cremations for the whole | :25:54. | :26:01. | |
area. And today, we have asked them to commission this. Well, you can | :26:02. | :26:06. | |
imagine, we were delighted to have that, and to have three secretaries | :26:07. | :26:10. | |
of state acknowledge that, those families deserve to know wh`t had | :26:11. | :26:16. | |
happened. That was excellent news, and I was delighted that thd | :26:17. | :26:19. | |
Secretary of State decided to do that. However, there were two | :26:20. | :26:24. | |
issues, rightly so that rem`ined of concern. One was the jurisdhction | :26:25. | :26:29. | |
point, it wasn't just about the local council who had responsibility | :26:30. | :26:33. | |
for the crematorium, it was also about the national Health Sdrvice | :26:34. | :26:35. | |
and the role that they playdd, and the training needs and anything else | :26:36. | :26:37. | |
that might come out of any Inquiry. There was also an hssue | :26:38. | :26:47. | |
about private funeral directors and how they would be compelled to be | :26:48. | :26:51. | |
part of any investigation, so it was quite clear that there were some | :26:52. | :26:54. | |
issues that needed to be addressed. And the other issue that I did have | :26:55. | :26:59. | |
quite a lot of sympathy with, was about the cost of holding an | :27:00. | :27:03. | |
independent enquiring. We know that enquiries and be expensive `nd we | :27:04. | :27:06. | |
know that both councils are under enormous financial pressure at the | :27:07. | :27:13. | |
moment. So I supported, Hull City Council, in returning to thd | :27:14. | :27:17. | |
Department of Justice and asking for cavitation on those two points. | :27:18. | :27:21. | |
Jurisdiction and whether thdre was any financial help availabld. That | :27:22. | :27:24. | |
all seem to be going well, H thought they were genuine issues to deal | :27:25. | :27:31. | |
with. However on the 26th of December 2016, the new Justhce | :27:32. | :27:35. | |
Secretary wrote to Hull Citx Council, saying that she thought it | :27:36. | :27:40. | |
was now no longer any need for an enquiring. This letter was not | :27:41. | :27:45. | |
copied to me or my constitudnt, and I only became aware of it bdcause | :27:46. | :27:49. | |
the Chief Executive of Hull City Council sent a copy to me. H had to | :27:50. | :27:55. | |
say on behalf of my constittents and many families in Hull, I am furious | :27:56. | :27:59. | |
that a decision made by thrde secretaries of state, was jtst | :28:00. | :28:06. | |
completely overturned with no consultation, or any kind of | :28:07. | :28:15. | |
attempt, to consult with me or my constituent, my constituent as you | :28:16. | :28:20. | |
can imagine is devastated. @nd when I read the letter from Hull City | :28:21. | :28:25. | |
Council, it said that they had carried out investigations, they | :28:26. | :28:27. | |
were satisfied that everythhng had been done as it could be done. | :28:28. | :28:34. | |
Reading the letter it was also clear that they had not engage fully with | :28:35. | :28:39. | |
the problems around the NHS and the funeral directors and is certainly | :28:40. | :28:42. | |
hadn't engaged fully with the families. In recent years, we have | :28:43. | :28:46. | |
become very much more an opdn country and we are less willing to | :28:47. | :28:52. | |
take the word of trust and `uthority figures. Organisations left to | :28:53. | :28:54. | |
investigate themselves, rardly see the need for independent scrutiny of | :28:55. | :28:59. | |
their actions. You only havd to look at cases like Hillsborough. | :29:00. | :29:04. | |
Organisations that investig`te themselves almost always find | :29:05. | :29:07. | |
nothing much wrong and no one answerable for any error th`t is | :29:08. | :29:13. | |
ever owned up to. Nothing to see here, go away, move on, could be the | :29:14. | :29:19. | |
motto of that culture. Now ht nearly 100 families in Hull coming forward, | :29:20. | :29:23. | |
they are not just going to go away and accept that they will not get | :29:24. | :29:26. | |
the answers to the questions they are asking about the ashes of their | :29:27. | :29:31. | |
deceased babies and what happened. A proper independent enquiring, run | :29:32. | :29:36. | |
from outside Hull City Council, that at a proper independent Inqtiry As | :29:37. | :29:41. | |
to whether or not more could be learned is the least that they | :29:42. | :29:48. | |
deserve. Without the lessons of the past learned, there will be less | :29:49. | :29:54. | |
confidence, as to whether rdforming practices in the crematoriul by | :29:55. | :29:58. | |
ministers will be enough. I do not understand why the Secretarx of | :29:59. | :30:01. | |
State for Justice, what she had to gain by closing down the prospect of | :30:02. | :30:04. | |
proper independent scrutiny of what went wrong in Hull. In this week in | :30:05. | :30:11. | |
particular, I would just ask the Minister to put himself in the shoes | :30:12. | :30:16. | |
of those families in Hull, who want answers and justice. And thdre are | :30:17. | :30:21. | |
three key demands. First of all I believe that my constituent ought to | :30:22. | :30:25. | |
receive an apology from the Secretary of State justice `nd I | :30:26. | :30:28. | |
think she ought to give her the courtesy of a personal meethng just | :30:29. | :30:32. | |
as the previous Secretary of State did. And thirdly, I think the | :30:33. | :30:35. | |
independent investigation as to what happened to the baby ashes hn Hull | :30:36. | :30:40. | |
should be reinstated forthwhth, with funding from the government to | :30:41. | :30:44. | |
ensure that this enquiring can go ahead. -- this Inquiry. What an | :30:45. | :30:54. | |
honour it is to follow that speech, from the Honourable Lady from | :30:55. | :30:57. | |
Kingston Uppal Hull. We havd looked closely together on difficulties | :30:58. | :31:03. | |
relating to infant cremations. And I very much listened with intdrest as | :31:04. | :31:07. | |
to what she had to say todax. When my son died I was told by otr | :31:08. | :31:11. | |
consultant that one day it would be possible to put my grief in the box | :31:12. | :31:15. | |
and only open the box when ht suited me. The sea at the time I thought | :31:16. | :31:20. | |
she was completely insane. Now I realise it is possible to h`ve an | :31:21. | :31:23. | |
element of control over lifting the lid on public although not when I | :31:24. | :31:26. | |
have exercise particularly well today. -- not one. Over the years I | :31:27. | :31:33. | |
have talked about my experidnces, raising money for mental he`lth | :31:34. | :31:35. | |
charities and I have learned that nothing opens those wallets quicker | :31:36. | :31:45. | |
than tears. I have also, talked to midwives, they are used emotional | :31:46. | :31:49. | |
mothers, it is an honour to be Vice chair of this APPG and to h`ve been | :31:50. | :31:54. | |
thereat its conception, one very late night in the tearoom. We have | :31:55. | :31:57. | |
well and truly lifted the lhd this week in Parliament which is an | :31:58. | :32:02. | |
achievement itself. But just as importantly we have succeeddd in | :32:03. | :32:06. | |
enlisting both health and Elma J Minister certainly to date, to our | :32:07. | :32:08. | |
cause. The Secretary of State's emotion was obvious to all `nd I was | :32:09. | :32:17. | |
piece to see him earlier. The charitable fundraiser in me did | :32:18. | :32:21. | |
wonder if next year we should ask a well-known tissue manufacturer tiffs | :32:22. | :32:26. | |
to sponsor this debate next year. In brief, during my third pregnancy, my | :32:27. | :32:39. | |
son died soon after he was born and for some time it was not all if I | :32:40. | :32:45. | |
was surprised. To put it into context, my father slipped from this | :32:46. | :32:48. | |
place at a time of enormous difficulty from the governmdnt which | :32:49. | :32:52. | |
shows clearly it was considdred serious, my condition was vdry | :32:53. | :32:55. | |
serious. I went on to have two more children aged 15 and 13. | :32:56. | :33:00. | |
With your permission I would like to touch on learning points from my own | :33:01. | :33:06. | |
experience, then about some of the work we have done in the APG this | :33:07. | :33:13. | |
year, them finally make somd points about maternity going forward. The | :33:14. | :33:18. | |
learning points from my own expect out of date but sadly not all of the | :33:19. | :33:23. | |
things have been put right, obviously physical care comds first | :33:24. | :33:27. | |
in maternal and baby death hs a real possibility but someone needs to be | :33:28. | :33:30. | |
tasked with the mental care of the whole family as the death of the | :33:31. | :33:35. | |
baby leaves deep scars in so many in his or her relations. Memorhes, | :33:36. | :33:40. | |
clothes and photos make a rdal difference later, however mtch they | :33:41. | :33:43. | |
seem like frippery at the thme. Putting bereaved mothers in with my | :33:44. | :33:46. | |
babies is not on, however ill they babies is not on, however ill they | :33:47. | :33:51. | |
are. Explaining what is going on all the time is critical, and m`de new | :33:52. | :33:55. | |
to be done many times to different family members. Medical conditions | :33:56. | :34:01. | |
has to be understood by those suffering. Midwives, as my | :34:02. | :34:07. | |
honourable friend said, need more than one hour of bream and training | :34:08. | :34:10. | |
and they also need training on how to have grown-up conversations on | :34:11. | :34:15. | |
things like lactation which are utterly lacking in my experhence. | :34:16. | :34:20. | |
Training all obstetric staff is so important because so many p`tients | :34:21. | :34:25. | |
go on to have more children, GPs and other health workers also nded to be | :34:26. | :34:29. | |
aware of the long-term effect of baby loss. It is difficult to go | :34:30. | :34:33. | |
back to the hospital with whatever condition in the future, let alone | :34:34. | :34:37. | |
want to do with pregnancy. Where possible, parents should not have to | :34:38. | :34:41. | |
do to tell and we tell their story at every important. The syndrome I | :34:42. | :34:46. | |
list suffered from Leeds to multiple organ failure, so not being a doctor | :34:47. | :34:50. | |
and not understanding what hs wrong with me now, if I have a minor | :34:51. | :34:56. | |
condition and go to the doctor means I have to go through the whole story | :34:57. | :35:01. | |
again. The simple flag on mx notes would be easy to do so is every time | :35:02. | :35:04. | |
I have my blood pressure taken I have to retell everything. Fathers, | :35:05. | :35:10. | |
as my honourable friend mentioned, get ignored. We need proper evidence | :35:11. | :35:15. | |
of the effects of babies piling on relationships. We have some evidence | :35:16. | :35:20. | |
that we have touched on -- babies dying on relationships. This is not | :35:21. | :35:27. | |
good enough. May I read frol this Lancet article, fathers reported | :35:28. | :35:31. | |
feeling added knowledge is ` legitimately grieving parents. The | :35:32. | :35:35. | |
burden of these men keeping feelings to themselves increase the risk of | :35:36. | :35:39. | |
chronic grief. Differences hn the grieving process stream pardnts can | :35:40. | :35:44. | |
lead to incongruent grief, which was reported to cause serious | :35:45. | :35:48. | |
relationship issues. Affect on grandparents should also be | :35:49. | :35:51. | |
considered. In the case of ly own parents, they had to cope whth a lot | :35:52. | :35:54. | |
of their grandchild and the very near loss of their daughter. In my | :35:55. | :36:00. | |
view, access to mental health provision must be standardised and | :36:01. | :36:04. | |
good practice copied. 40% of parents of premature babies need sole mental | :36:05. | :36:10. | |
health intervention. For those with babies who die, I would certainly | :36:11. | :36:14. | |
suggest that everyone need `t least an assessment. I also think that | :36:15. | :36:17. | |
relationship counselling should be offered as part of an autom`tic | :36:18. | :36:21. | |
deal, although I do not know what pages this would be benefichal at. | :36:22. | :36:27. | |
At the very least, we need dvidence of the effect of baby loss on | :36:28. | :36:33. | |
relationships. The APPG is lade up of individuals with different | :36:34. | :36:38. | |
expenses and talents, the mdmber for Colchester is excellent on parental | :36:39. | :36:43. | |
leave, the other member knows about pathways of care. My role this year | :36:44. | :36:46. | |
has been instant cremations, not least because of a constitudncy case | :36:47. | :36:51. | |
I had. While I am aware that the minister here is not the Minister | :36:52. | :36:56. | |
responding, is not the minister who should respond on infant crdmation | :36:57. | :37:01. | |
issues, it is important that we have a cross departmental and johned up | :37:02. | :37:04. | |
approach to this so I would welcome his intervention is necessary or at | :37:05. | :37:09. | |
least his speaking to the Mhnistry of Justice about this. I th`nk my | :37:10. | :37:13. | |
giving way, thank you Mr Deputy giving way, thank you Mr Deputy | :37:14. | :37:17. | |
Speaker. I would be horrifidd I listen to this debate, I have never | :37:18. | :37:26. | |
lost a baby my family. I am horrified and I am upset, btt it | :37:27. | :37:30. | |
seems to me that surely, a lother that gives birth, still bordd or | :37:31. | :37:37. | |
not, it is her baby, the falily s baby. Surely -- stillborn or not, it | :37:38. | :37:44. | |
is her baby, the family's b`by. Surely she and the father should | :37:45. | :37:47. | |
have absolute rights with what happens with cremation and | :37:48. | :37:50. | |
thereafter. I absolutely horrified that they do not at the momdnt. I | :37:51. | :37:57. | |
thank my honourable friend for his helpful intervention. We have the | :37:58. | :38:00. | |
APPG welcome the MOT consultation and the subsequent response which | :38:01. | :38:05. | |
was published just before the summer. It seems we are on the cusp | :38:06. | :38:08. | |
of some very important changes in this area. What I would ask is that | :38:09. | :38:15. | |
we push that these happen speedily, they are very important. I `m | :38:16. | :38:20. | |
grateful to my honourable friend for letting me intervene on her in and | :38:21. | :38:24. | |
important speech. I would lhke to inform the House on the back of that | :38:25. | :38:28. | |
comment, that my colleague the Minister at the Ministry of Justice | :38:29. | :38:31. | |
announced last month before mention of a national cremation working | :38:32. | :38:37. | |
group which is working now with all interested parties including looking | :38:38. | :38:41. | |
to take members of this house's evidence, and I encourage all of | :38:42. | :38:45. | |
participate. I thank the Minister participate. I thank the Minister | :38:46. | :38:48. | |
for that and we were thrilldd in the APPG by the formation of th`t group. | :38:49. | :38:52. | |
May I in this context gives the House a few more examples from the | :38:53. | :38:57. | |
are particularly important that are are particularly important that are | :38:58. | :38:59. | |
taken forward speedily. We hope that taken forward speedily. We hope that | :39:00. | :39:04. | |
the MoJ will provide a statttory definition of Ashes to make sure | :39:05. | :39:08. | |
that everything cremated with a baby, including personal itdms and | :39:09. | :39:14. | |
covered, must be recovered. We also help that the MoJ will amend | :39:15. | :39:18. | |
cremation application forms to make explicit the applicant's wishes in | :39:19. | :39:25. | |
relation to the Ashes recovdred And crucially, for many I know this is | :39:26. | :39:31. | |
an important point, bring the cremation of foetuses of less than | :39:32. | :39:35. | |
24 weeks gestation within the scope of the regulation where pardnts wish | :39:36. | :39:40. | |
this to happen. There is sole positive news in a very sensitive | :39:41. | :39:44. | |
area. Moving on to the future of maternity more generally, mx | :39:45. | :39:49. | |
overriding constituency concern at the moment is the future of the | :39:50. | :39:54. | |
Horton General Hospital. If I am honest, it occupies most of my | :39:55. | :39:58. | |
waking moments and my children complained during our summer holiday | :39:59. | :40:02. | |
in August that I cannot forlulate a sentence without the word Horton in | :40:03. | :40:08. | |
it. I fear that is true. Thhs summer, I found that the lid being | :40:09. | :40:15. | |
listed on my own experience is repeatedly, as we have real safety | :40:16. | :40:18. | |
concerns surrounding the downgrading of our obstetric unit at thd Horton | :40:19. | :40:21. | |
General. Since last week, a midwife General. Since last week, a midwife | :40:22. | :40:25. | |
led unit remains at the Horton General but all mothers who may need | :40:26. | :40:30. | |
obstetric care, and that is may need not necessarily will need, that is | :40:31. | :40:35. | |
the majority of mothers, has to go either under their own steal or be | :40:36. | :40:39. | |
transferred as an emergency to the JR in Oxford. In a blue light | :40:40. | :40:44. | |
ambulance, this is a journex between 22 and 27 miles depending on the | :40:45. | :40:49. | |
route. It takes around 45 mhnutes. If travelling on your own c`r, and | :40:50. | :40:54. | |
mothers have their own cars, mothers have their own cars, | :40:55. | :40:56. | |
depending on where you live and the state of the Oxford traffic, it can | :40:57. | :41:00. | |
easily take up to an hour and a half. The decision to downgrade was | :41:01. | :41:05. | |
taken on safety grounds as the trust had failed to recruit enough | :41:06. | :41:10. | |
obstetricians. I must say, H have severe safety concerns for the | :41:11. | :41:13. | |
mothers and babies in our area now. In 2008, a report concluded the | :41:14. | :41:20. | |
distance was too far for our unit to be downgraded. As I see it, nothing | :41:21. | :41:23. | |
has changed except that the Oxford traffic has worsened. I'm kden | :41:24. | :41:30. | |
generally that we start to be kinder to mothers during pregnancy and | :41:31. | :41:35. | |
mean courage in them to labour on mean courage in them to labour on | :41:36. | :41:41. | |
the back of a car on the ro`d. With a personal care actually le`ds to | :41:42. | :41:47. | |
better outcomes. We need to take very careful note of the baroness's | :41:48. | :41:51. | |
I commend Asians in her better birth report. She says that birth -- | :41:52. | :41:56. | |
recommendations in her birth report. She said that both should bdcome | :41:57. | :42:00. | |
kinder and more family friendly We must use the impetus of events such | :42:01. | :42:04. | |
as this week to drive through her major recommendations. Chief among | :42:05. | :42:10. | |
these must be the recommend`tion for continuity not of care, but of | :42:11. | :42:18. | |
carer. This has been shown to reduce premature deaths by 24%. Professor | :42:19. | :42:30. | |
Lesley Regan, this first wolan president of the wild card of | :42:31. | :42:36. | |
applications -- president of the Royal College of obstetrici`ns has | :42:37. | :42:39. | |
done a plethora of search which demonstrate that reassurancd and | :42:40. | :42:43. | |
continuity with weekly scans and meetings with the midwife h`s | :42:44. | :42:50. | |
reduced the rate of recurrent miscarriage by 80%, these women have | :42:51. | :42:55. | |
miscarried three or four tiles. The honourable friend mentioned earlier | :42:56. | :42:59. | |
the excellent work being done at Queen Charlotte. In this context I | :43:00. | :43:03. | |
have troubled that the sustainability and transforlation | :43:04. | :43:07. | |
plans made push us towards larger units have left personal care. It | :43:08. | :43:11. | |
maybe I am wrong and I hope I am. Perhaps it is safer for these giant | :43:12. | :43:15. | |
units to deliver the majority of babies. But I worry that in my case | :43:16. | :43:22. | |
in boundary, decisions are being taken in my constituency without | :43:23. | :43:26. | |
their views being considered and without real evidence of thd risks | :43:27. | :43:29. | |
being involved. Everyone in the House is clearly committed to | :43:30. | :43:38. | |
reducing baby loss and therd is clear evidence. We have evidence | :43:39. | :43:43. | |
-based research to show us how to do that and I refer the Ministdr very | :43:44. | :43:50. | |
firmly to the baroness's report Better bereavement care is | :43:51. | :43:53. | |
important, and sadly some b`bies such as mine will always did, but | :43:54. | :44:02. | |
reduce premature death of b`by. I reduce premature death of b`by. I | :44:03. | :44:10. | |
need to be able to tell my constituency is members that they | :44:11. | :44:16. | |
will not suffer as I did. It is a pleasure to follow that excdllent, | :44:17. | :44:19. | |
very moving and yet very pr`ctical speech from the honourable lember | :44:20. | :44:26. | |
who is making me want to crx. I think the idea of having a tissue | :44:27. | :44:29. | |
manufacturer sponsoring this debate was quite a good one. I would also | :44:30. | :44:33. | |
like to pay tribute to the honourable member for industry and | :44:34. | :44:37. | |
the honourable member for Colchester for bringing this really important | :44:38. | :44:44. | |
debate of the House. We are all owing them for raising awardness of | :44:45. | :44:51. | |
this issue, as one of their commitment to the APPG. I would also | :44:52. | :44:54. | |
like to pay tribute to the families who actually started baby loss | :44:55. | :45:01. | |
awareness Day in 2002, and now to the thousands of families across the | :45:02. | :45:02. | |
country who continue the colmitment country who continue the colmitment | :45:03. | :45:07. | |
to helping other family through their grief was highlighting whilst | :45:08. | :45:14. | |
highlighting the lack of colmunity bereavement care. Thousands of | :45:15. | :45:19. | |
families each year in the UK suffer the tragedy of losing a child and | :45:20. | :45:25. | |
hopefully this debate might in some small way leads to them not having | :45:26. | :45:32. | |
are not alone in their grief. This are not alone in their grief. This | :45:33. | :45:34. | |
debate has raised many issuds, many debate has raised many issuds, many | :45:35. | :45:38. | |
of which are uncomfortable but very necessary if we have to change | :45:39. | :45:45. | |
policy to help reduce infant death, help save the rear families from | :45:46. | :45:51. | |
isolation, and to make sure -- bereaved families from isol`tion, | :45:52. | :45:54. | |
and make sure that the best possible neonatal care is | :45:55. | :45:58. | |
and make sure that the best possible neonatal care available to dveryone | :45:59. | :46:01. | |
in the NHS. Before I was eldcted to this place, I worked in the NHS in | :46:02. | :46:06. | |
the Northwest. They perform some good work in this area incltding | :46:07. | :46:12. | |
holding an annual baby memorial day for parents who had lost babies in | :46:13. | :46:17. | |
the hospital, which was led by our excellent hospital chaplains who | :46:18. | :46:20. | |
performed such a good service to bereaved parents. Sadly, I was asked | :46:21. | :46:23. | |
to attend this debate by my constituent Jane Casey whosd | :46:24. | :46:29. | |
daughter tragically died shortly after her birth at the trust. Jane | :46:30. | :46:37. | |
has still not received the root cause analysis into her daughter's | :46:38. | :46:40. | |
Beth from the trust, and IM helping her in obtaining this report 11 | :46:41. | :46:48. | |
months after her death. Jamhe says, and these are her words, thd | :46:49. | :46:53. | |
hospital has made me feel that my daughter's life was not important. I | :46:54. | :46:58. | |
am completely broken and find life a struggle. I keep on going bdcause of | :46:59. | :47:08. | |
my son. Such a sad words and so typical of examples that have been | :47:09. | :47:13. | |
shared today. I really am hopeful that this debate could achidve some | :47:14. | :47:16. | |
practical steps to avoid falilies suffering such grief. And hdalth | :47:17. | :47:20. | |
visitors, who have not been mentioned yet, they play such an | :47:21. | :47:23. | |
important role pre-and post-pregnancy and can give support | :47:24. | :47:30. | |
and practical help and yet there role is undervalued. Since 2015 | :47:31. | :47:35. | |
health visitors have been ddvolved to local authorities but since then | :47:36. | :47:40. | |
we have seen nearly ?200 million of cuts to local authorities. The | :47:41. | :47:44. | |
former Chancellor of the extractor announced a further ?77 million cut | :47:45. | :47:49. | |
in the next year and ?84 million in the year after. The funding | :47:50. | :47:55. | |
transferred with these health visiting services was not rhng | :47:56. | :47:58. | |
fenced and I sincerely hope that under the guidance of a new Prime | :47:59. | :48:02. | |
Minister and new Chancellor, that they will look at protecting and | :48:03. | :48:04. | |
investing more in this vital service. Staggeringly, 68% of local | :48:05. | :48:13. | |
bereavement support while ndarly a bereavement support while ndarly a | :48:14. | :48:17. | |
fifth of ccs also do not offer such a service. For what seems a vital | :48:18. | :48:23. | |
and necessary provision for families in their time of greatest nded, the | :48:24. | :48:26. | |
failure to do so is clearly apparent in our health care structurds. I am | :48:27. | :48:34. | |
pleased to say that NHS England are currently developing the chhldren | :48:35. | :48:36. | |
palliative care funding currency, which includes pre-brief and care | :48:37. | :48:44. | |
before a baby or child dies, but sadly overlooks bereavement care | :48:45. | :48:47. | |
would hope to see is being lade to would hope to see is being lade to | :48:48. | :48:49. | |
this policy. The government and this has also has | :48:50. | :48:58. | |
the opportunity to make changes by moving the rubble member from | :48:59. | :49:01. | |
Colchester boss might build to have on the statute books parent`l brief | :49:02. | :49:07. | |
believe, this would give thd right entitlement to leave of absdnce for | :49:08. | :49:11. | |
bereaved parents. This is a common right across Europe and I think it | :49:12. | :49:15. | |
is an important first step hn the right direction and I entitlement | :49:16. | :49:18. | |
that should be afforded to `ll at their time of greatest need. Whilst | :49:19. | :49:24. | |
mothers fathers and families will never forget the children they have | :49:25. | :49:29. | |
lost. Baby loss awareness wdek is a chance for those families to meet | :49:30. | :49:33. | |
other families and share melories in remembrance. A collective sharing of | :49:34. | :49:38. | |
experiences can begin to he`l and alleviate a small part of the pain. | :49:39. | :49:43. | |
The most powerful thing it provides is the opportunity to speak out and | :49:44. | :49:49. | |
to prevent others from softdning the same agony happening to othdr | :49:50. | :49:53. | |
parents across the UK. And we as legislators, must seek to act upon | :49:54. | :49:58. | |
the word spoken here in the house, to create a better environmdnt of | :49:59. | :50:03. | |
support for bereaved familids. And finally, can I pay tribute to my | :50:04. | :50:09. | |
honourable friend, the membdr for Lewisham Deptford for sharing the | :50:10. | :50:13. | |
Chadwick story of her daughter Veronica, I'm in awe of the bravery | :50:14. | :50:17. | |
and the courage that she showed in speaking out today. And the bravery | :50:18. | :50:20. | |
and courage has been echoed in the words of the honourable members for | :50:21. | :50:24. | |
North Ayrshire and Arran, W`shington and Sunderland, the honourable | :50:25. | :50:28. | |
member for Banbury and indedd the two honourable members who have | :50:29. | :50:30. | |
brought this debate to the house today and I thank you very luch for | :50:31. | :50:34. | |
giving me my opportunity to speak, thank you. People have got to stand | :50:35. | :50:46. | |
up, Byron Davies. Thank you Madam Deputy Speaker, I'm very gr`teful | :50:47. | :50:52. | |
and it is a great pleasure to participate in this debate today. I | :50:53. | :50:56. | |
want to thank, and congratulate my honourable friends, for Ed hs brief | :50:57. | :51:01. | |
and Colchester for securing and bringing for this incrediblx | :51:02. | :51:08. | |
deportment important debate. And to their work with your Parlialentary | :51:09. | :51:13. | |
party group and other honourable members who have participatdd in it. | :51:14. | :51:19. | |
Can I pay tribute, to the honourable members, for Lewisham and Ddptford | :51:20. | :51:25. | |
and Ayrshire, Aaron and Banbury I have known the honourable mdmber for | :51:26. | :51:29. | |
Ed is brief for quite some time we have been friends, and of course | :51:30. | :51:33. | |
were both members of the National Assembly for Wales. Indeed we used | :51:34. | :51:37. | |
to sit next to each other at the assembly and I witnessed first-hand | :51:38. | :51:39. | |
the terrible loss and devastation that she had when going through her | :51:40. | :51:45. | |
baby loss. It is a testament to her courage and resolve that despite the | :51:46. | :51:48. | |
tragic loss she is highlighting the issue once again, which is `ffecting | :51:49. | :51:54. | |
some of us here today. It t`kes bravery to tackle the silence and | :51:55. | :51:59. | |
Sigma that used to exist, and she was instrumental in tackling this | :52:00. | :52:03. | |
when she was an assembly melber She has also been instrumental hn | :52:04. | :52:07. | |
bringing this issue to the national stage and raising awareness for the | :52:08. | :52:10. | |
tens of thousands of familids who need help and support. In p`ying | :52:11. | :52:16. | |
tribute to the outstanding work she is doing and in the than thd 20 5 | :52:17. | :52:20. | |
the Secretary of State launched the national ambition to reduce the | :52:21. | :52:26. | |
rates of stillbirths, neonatal deaths, maternal deaths and brain | :52:27. | :52:29. | |
injuries. That occur during or soon after birth, 15% by 2030 with a | :52:30. | :52:39. | |
shorter name of achieving a 27 cent reduction by 2020, and this no doubt | :52:40. | :52:43. | |
will be in large part to thd excellent work, for the honourable | :52:44. | :52:49. | |
member for Colchester are doing In 2014 there were 3245 stillbhrths, | :52:50. | :52:55. | |
and 2689 infant deaths in England and Wales. The death of a b`by is | :52:56. | :53:00. | |
one of the most traumatic events for a mother and father to go through. | :53:01. | :53:05. | |
And then having to deal with the aftermath of it. The care that their | :53:06. | :53:09. | |
family receive is so vitallx important to try and cope in the | :53:10. | :53:13. | |
long-term with the loss. Th`t is why I am so pleased that this issue is | :53:14. | :53:17. | |
being raised by my honourable friend is because awareness is key to | :53:18. | :53:22. | |
reducing stillbirths and infant mortality but also to tacklhng the | :53:23. | :53:26. | |
stigma surrounding this isste. They can be no greater grief than that of | :53:27. | :53:32. | |
losing a child. It causes psychological conditions th`t last | :53:33. | :53:36. | |
years and even a lifetime. The loss can never truly leave you btt how we | :53:37. | :53:39. | |
care for families and indivhduals can make a huge difference for the | :53:40. | :53:43. | |
future lives of those who h`ve lived with this tragedy. I have bden | :53:44. | :53:47. | |
through it myself, my wife `nd I have a wonderful son, but wd have | :53:48. | :53:52. | |
also lost a child during thd period in the 1980s, where there w`s | :53:53. | :53:58. | |
certainly a stigma on this hssue. You just couldn't talk about it It | :53:59. | :54:05. | |
was to blue. It was almost `n embarrassment to bring it ott in | :54:06. | :54:08. | |
public and we could not discuss the grief and suffering that we felt, or | :54:09. | :54:13. | |
we help to deal with. One of the most traumatic experiences hn our | :54:14. | :54:17. | |
lives. It was a devastating experience and I'm pleased to say | :54:18. | :54:23. | |
that my son who is now 34, his lovely wife Natalie have prdsented | :54:24. | :54:27. | |
us with a grandchild. But h`ving children is one of those marvellous | :54:28. | :54:31. | |
and truly have the experiences for a couple and something that wd | :54:32. | :54:34. | |
cherish. Yet in a moment we can go from one of the happiest life | :54:35. | :54:38. | |
changing experiences to one of the most devastating. You lose ` child, | :54:39. | :54:42. | |
something that you and your loved one would build a life for `nd | :54:43. | :54:47. | |
around, that you look forward to, sports at school, graduation, | :54:48. | :54:53. | |
marriages, in the future, and links to the cherished future, th`t child | :54:54. | :54:57. | |
and happiness is currently taken away. And I member when we | :54:58. | :55:00. | |
experienced this loss, therd was no way to talk about it and all of | :55:01. | :55:05. | |
those feelings had to be bottled up. This never does or never can help | :55:06. | :55:11. | |
with the grieving process. Hndeed, we too were advised, given ledical | :55:12. | :55:15. | |
advice to keep trying. I'm `fraid that was not quite good enotgh at | :55:16. | :55:20. | |
the time. It brings me to the absolutely crucial point, that like | :55:21. | :55:24. | |
with many issues of mental health, that talking about problems, is | :55:25. | :55:29. | |
always a sign of strength, had never one of weakness. It is of course | :55:30. | :55:34. | |
right and vitally important that we have the very best care, cotnselling | :55:35. | :55:38. | |
and services for mothers who have experienced this agonising loss and | :55:39. | :55:42. | |
are treated with kindness, sensitivity and respect in the | :55:43. | :55:45. | |
hospital afterwards. But I `lso think it is crucial that we support | :55:46. | :55:48. | |
fathers who while being strong for the mother and focusing on her knees | :55:49. | :55:52. | |
also has two bear that terrhble loss. We have expense this first | :55:53. | :56:00. | |
hand in my family, there was a great feeling of powerlessness and | :56:01. | :56:04. | |
anguish, when you see a wifd or a mother with no idea of the hssue | :56:05. | :56:07. | |
will the outcome and all yot try to do is start | :56:08. | :56:11. | |
have your own family. You sdem like a bystander with no power to help | :56:12. | :56:23. | |
your loved ones. Therefore we must insure that the NAFTA shall health | :56:24. | :56:27. | |
service, provide counselling, with statutory leave to provide the best | :56:28. | :56:35. | |
support. With this in mind, I fully and wholeheartedly support ly | :56:36. | :56:38. | |
honourable friends for Colchester and my honourable friend, and his | :56:39. | :56:43. | |
parental bereavement leave, which is fundamental to guarantee th`t | :56:44. | :56:47. | |
parents have some time to try to grieve for their loss and I'm sure | :56:48. | :56:51. | |
that for this chance to be given in these to be on a statutory footing. | :56:52. | :56:55. | |
Finally, I want to say that I'm pleased that the apartment of health | :56:56. | :57:00. | |
has conducted a survey, for the bereavement in England to btild up | :57:01. | :57:04. | |
the provision of current provision and identify whether gaps are. It is | :57:05. | :57:08. | |
also crucial in hearing somd good practice, and understanding the | :57:09. | :57:14. | |
challenges, that the governlent is increasing the number of midwives. | :57:15. | :57:17. | |
It is hoped that this will lead to an increase in the number of | :57:18. | :57:21. | |
midwives, who has specialist training. This should be a lesson to | :57:22. | :57:26. | |
all of our devolved governmdnts As we have found, fewer than h`lf of | :57:27. | :57:33. | |
doctors and midwives have found out, it is vital that staff are trained, | :57:34. | :57:38. | |
for the psychological and physical needs of families and to cotnsel | :57:39. | :57:42. | |
them when needed. I hope th`t the government committing going even | :57:43. | :57:46. | |
further than improving mand`tory training, and supporting thd need | :57:47. | :57:50. | |
for statutory lead, for the loss of the most cherished things in our | :57:51. | :58:03. | |
lives, the child. Anna Soubry. Thank you very much indeed man Deputy | :58:04. | :58:06. | |
Speaker, it is or was with care that one treads into an area of life but | :58:07. | :58:11. | |
like many honourable members, Ira member in the 21 or 22 week area of | :58:12. | :58:18. | |
the pregnancy when the marvdllous magical moment of what the books | :58:19. | :58:23. | |
described as a fluttering, `nd you suddenly realise that if yot have | :58:24. | :58:27. | |
experienced it, the actual nightmare of morning sickness, the other | :58:28. | :58:31. | |
afflictions as they are oftdn are, of pregnancy, actually is all about | :58:32. | :58:36. | |
this new life that is there within you. And I suspect, not alone | :58:37. | :58:45. | |
amongst, many honourable melbers of both sexes, that moment when you | :58:46. | :58:50. | |
look into the Moses basket `nd next time you look into it, that bundle | :58:51. | :58:55. | |
of life that you bear, will be in it. And of course, you are dxtremely | :58:56. | :59:00. | |
excited about that, and also the truth is, you are ready rather | :59:01. | :59:04. | |
frightened of this. When it is your first child and you have never had a | :59:05. | :59:11. | |
baby before. And so, I find it absolutely unimaginable, to have | :59:12. | :59:17. | |
experienced as so many in the place has spoken with great courage, what | :59:18. | :59:22. | |
it must be like never to have that Moses basket filled with jox and the | :59:23. | :59:26. | |
child that you have born for well over nine months. I want to warmly | :59:27. | :59:34. | |
congratulate, both my honourable friends, for edits Breanne | :59:35. | :59:36. | |
Colchester not only for sectring this debate but for the gre`t work | :59:37. | :59:40. | |
that they have done. And nobody could have been unaffected `nd not | :59:41. | :59:50. | |
moved, by the incredibly sad story of the honourable lady who | :59:51. | :59:54. | |
represents Lewisham Deptford. And the honourable lady who represents | :59:55. | :59:59. | |
North Ayrshire and Arran. If I may say with no lessening of thd | :00:00. | :00:02. | |
terrible story that we have heard from the honourable lady from North | :00:03. | :00:07. | |
Ayrshire, I think we were all particularly struck by the story of | :00:08. | :00:11. | |
the honourable lady, the experience that she had from Lewisham `nd | :00:12. | :00:15. | |
Deptford, not just with gre`t sorrow. Actually with I had to say, | :00:16. | :00:20. | |
I felt a rise of anger withhn me because I thought it was outrageous | :00:21. | :00:23. | |
what had happened to the honourable lady. I want to be really m`de | :00:24. | :00:29. | |
secure that what happened to her, will never happen again, to anybody, | :00:30. | :00:37. | |
in our society. Obviously I extend that to everybody who was brought to | :00:38. | :00:41. | |
this place by way of their own experiences or their constituents | :00:42. | :00:45. | |
experiences, that we learned the lessons of all of this. We do | :00:46. | :00:50. | |
everything we can, to make sure that firstly babies don't die in the | :00:51. | :00:53. | |
first place and so we don't have the high rates of stillbirth th`t we | :00:54. | :00:57. | |
have heard about, or those that then die in those early months of their | :00:58. | :01:03. | |
life, but it is the treatment, of people, of both parents, th`t must | :01:04. | :01:09. | |
be changed. I want to hold ` spark of hope in my life that what | :01:10. | :01:13. | |
happened to the honourable lember for Lewisham and Deptford, H would | :01:14. | :01:20. | |
like to think it was a one. I like to think that over the pass`ge of | :01:21. | :01:25. | |
time perhaps we could be more confident that it is extremdly rare. | :01:26. | :01:29. | |
That nobody ever suffers wh`t she did, and of course nobody stffers | :01:30. | :01:35. | |
what the honourable Lady suffers as well. I want to make a short | :01:36. | :01:42. | |
contribution. It is really ` bad bereavement suites. It is b`sed | :01:43. | :01:46. | |
entirely on the experience of two of my constituents. One couple have | :01:47. | :01:57. | |
come friends of mine, anybody you heard of their story, there was much | :01:58. | :02:01. | |
sympathy, and real concern, to discover that when their baby Emily | :02:02. | :02:06. | |
was born, at a stillborn birth, where I had both my daughters, I | :02:07. | :02:11. | |
found it quite astonishing `nd dine every body else did that he`rd of | :02:12. | :02:16. | |
their story, back in 2013. That there was no Barizan and swdet. So | :02:17. | :02:21. | |
those honourable members who have talked about this terrible tragedy, | :02:22. | :02:26. | |
there is no greater tragedy than a loss of a child, and there `re no | :02:27. | :02:31. | |
degrees of grief. But to lose a baby in the circumstances, where we are | :02:32. | :02:36. | |
all becoming more aware of. I can't genuinely imagine any greatdr | :02:37. | :02:42. | |
tragedy and loss. And then to have that, it is almost cruel. While the | :02:43. | :02:47. | |
rest of us are celebrating `s we have heard, with balloons and | :02:48. | :02:48. | |
relatives. You with your terrible grief, to | :02:49. | :02:59. | |
have to sit with your loved one whilst all this jollity is going on, | :03:00. | :03:03. | |
because there is no place where you can go and grief. And have xour | :03:04. | :03:07. | |
private last moments with your baby. Before they are properly buried All | :03:08. | :03:13. | |
of these things are done properly. I think that is just appalling. I was | :03:14. | :03:17. | |
horrified to learn from the honourable member who represents | :03:18. | :03:27. | |
Eddsbury, it is still 25% of hospital streets who do not have the | :03:28. | :03:33. | |
bereavement suite. I think when a terrible tragedy happens, whatever | :03:34. | :03:37. | |
that tragedy might become htman beings wants to come togethdr to | :03:38. | :03:40. | |
make good of something that has been wholly horrible. I do not h`ve any | :03:41. | :03:47. | |
difficulty in those circumstances with parents working hand-in-hand | :03:48. | :03:50. | |
with the hospital trust where they do not have a bereavement stite to | :03:51. | :03:57. | |
create such a sweet. The Nottingham University Hospital trust dhd much | :03:58. | :04:00. | |
to make sure that when Rich`rd Michelle Daniels decided th`t they | :04:01. | :04:12. | |
would raise money to do such a sweet, it was a relatively dasy | :04:13. | :04:18. | |
journey. It was a plan to r`ise ?25,000, but within 18 months they | :04:19. | :04:23. | |
raised hundred ?50,000. Thex did it through a variety of fundrahsing | :04:24. | :04:28. | |
methods and after Emily died in 2013, it was with real joy `nd | :04:29. | :04:31. | |
pleasure that they finally opened the serenity suite at the Qteens | :04:32. | :04:38. | |
medical Centre in Nottinghal last year. Sorry, this year in April | :04:39. | :04:45. | |
Such has been their dedicathon to the charity that they founddd, they | :04:46. | :04:53. | |
have been contacted by parents from other parts of the East Midlands | :04:54. | :04:57. | |
Domino to be from Derby, whdre there is no such bereavement suitd. They | :04:58. | :05:03. | |
are now resurrecting the ch`rity and they are embarking on a hugd | :05:04. | :05:06. | |
bereavement suite. I urge them to bereavement suite. I urge them to | :05:07. | :05:11. | |
continue to do that. It is right that parents should be involved in | :05:12. | :05:15. | |
it. But it might equally be right that all those hospital trusts that | :05:16. | :05:19. | |
do not have the treatment stites now absolutely get on with it. They | :05:20. | :05:22. | |
should not have to rely on ` parent who has suffered this terrible loss | :05:23. | :05:29. | |
to spark them into taking action to make sure that these bereavdment | :05:30. | :05:32. | |
seats exist and that they are fully equipped and the staff are fully | :05:33. | :05:37. | |
trained. So my absolute congratulations to all thosd who | :05:38. | :05:41. | |
have spoken and particularlx to those who have laid bare thd worst | :05:42. | :05:45. | |
moments of their lives to ptt them forward so that we can ensure that | :05:46. | :05:49. | |
when we say to the government, and I know that the Minister will be | :05:50. | :05:53. | |
listening to all of this, that this really is an area from all of the | :05:54. | :05:57. | |
things that have been descrhbed and all the way that have been | :05:58. | :06:00. | |
described, this is not just about bereavement suite. It is now really | :06:01. | :06:04. | |
the time for action so that we can be proud as a nation that wd have | :06:05. | :06:08. | |
reduced the number of babies who are born dead or who die within the | :06:09. | :06:12. | |
first months of their infancy, and we do the right thing by thdir | :06:13. | :06:15. | |
parents and by all of them, and we look forward to the future that has | :06:16. | :06:18. | |
been denied for them and thdir child. Thank you. Can I pay tribute | :06:19. | :06:28. | |
to the honourable members for Eddsbury and Colchester. My | :06:29. | :06:36. | |
neighbour made a courageous and gracious speech today, and the | :06:37. | :06:39. | |
honourable member for Colchdster made a powerful and practic`l | :06:40. | :06:44. | |
speech. The number of colle`gues in this house who have shared their | :06:45. | :06:49. | |
personal experiences I think have shown how many people across the | :06:50. | :06:53. | |
country have been affected by this issue. And therefore what potential | :06:54. | :06:57. | |
there is to make a real difference there is to make a real difference | :06:58. | :07:01. | |
in so many people's lives in Newport this issue. -- bringing forward this | :07:02. | :07:11. | |
issue. Can I add my tributes to those of other members of the | :07:12. | :07:16. | |
chamber to the contributions from the other honourable members who | :07:17. | :07:24. | |
have spoken today, they werd truly moving. In fact, I have nevdr in | :07:25. | :07:29. | |
over six years of sitting in this chamber seen so many members so | :07:30. | :07:40. | |
visibly moved. I also want to pay tribute to the many midwives, | :07:41. | :07:41. | |
consultants and other members of consultants and other members of | :07:42. | :07:47. | |
staff in the NHS who did provide good bereavement care to victims of | :07:48. | :07:54. | |
at the most difficult time of their at the most difficult time of their | :07:55. | :07:57. | |
lives means that high-quality epiphytic care is critical. Thanks | :07:58. | :08:06. | |
needs to go to those who work at times so dedicated and with such | :08:07. | :08:11. | |
commitment in this arena. I want to start with a story from my | :08:12. | :08:17. | |
constituent which shows the NHS does in part provide extremely good care | :08:18. | :08:22. | |
but also requires more rigotr. I received a letter from my | :08:23. | :08:27. | |
constituent whose daughter was lost as a baby at 20 weeks. She'd had | :08:28. | :08:33. | |
excellent care from the grand logical consultant and the hospital | :08:34. | :08:37. | |
staff who treated the loss very sensitively. But there were failures | :08:38. | :08:39. | |
in her care. She writes, in her care. She writes, | :08:40. | :08:45. | |
unfortunately, the symptoms leading to the loss of a baby occurred at a | :08:46. | :08:51. | |
weekend. Protocols about sending her straight to the phonological | :08:52. | :08:55. | |
department were not followed. There was a chance the pregnancy light | :08:56. | :08:59. | |
have been saved. Nor were other protocols that so for instant her | :09:00. | :09:06. | |
midwife would have been informed, and rang up later asking whx | :09:07. | :09:12. | |
antenatal appointments were not kept. It geared to get my d`ughter | :09:13. | :09:18. | |
the specialist counselling she needed, and she did not know that | :09:19. | :09:19. | |
she was entitled to maternity leave. she was entitled to maternity leave. | :09:20. | :09:24. | |
It shows that there was a l`ck of joined up communication between the | :09:25. | :09:30. | |
front clinicians, potentially to assist her daughter. I understand | :09:31. | :09:36. | |
hospitals in that area are hmproving the training of staff and stpport | :09:37. | :09:41. | |
for bereaved parents but thhs was in a large city. And in this d`y and | :09:42. | :09:45. | |
age, this should have been better. I do also wants to contribute to this | :09:46. | :09:51. | |
young lady as well, because she is now setting up a new branch of | :09:52. | :09:57. | |
sounds in her area and it h`s been wonderful to hear today how many | :09:58. | :10:03. | |
people from their personal dxpenses, and during the course of assisting | :10:04. | :10:09. | |
others, have put their energies into such organisations. Stillbirth is | :10:10. | :10:20. | |
still almost, but thanks to this debate it will be decreasingly so, a | :10:21. | :10:25. | |
whole family of my constitudnts whole family of my constitudnts | :10:26. | :10:29. | |
says. And wider social and work contact groups. Mothers loshng babys | :10:30. | :10:35. | |
suffer grief, guilt and horlonal suffer grief, guilt and horlonal | :10:36. | :10:40. | |
effects while still trying to hold down jobs. As the mother of the | :10:41. | :10:45. | |
daughter who lost a child, this person says, I found this thme | :10:46. | :10:51. | |
emotionally very hard. Surely, she says, with more openness and | :10:52. | :10:56. | |
appropriate training, our country's shameful record of stillbirths | :10:57. | :10:58. | |
be improved. Mental health of be improved. Mental health of | :10:59. | :11:06. | |
mothers would be improved in meaning that it would be less presstre on | :11:07. | :11:13. | |
the health service. My daughter had a diagnosable infection, if this had | :11:14. | :11:17. | |
been screened on, there would be less babies lost, and this debate | :11:18. | :11:21. | |
called for better screening. Can I also as an adjunct to the mdmber for | :11:22. | :11:28. | |
Colchester, he called for more advice during pregnancy on smoking | :11:29. | :11:31. | |
and be city, -- of the city. advice during pregnancy on smoking | :11:32. | :11:43. | |
and be city, -- of the -- obesity, can I ask that alcohol is added to | :11:44. | :11:52. | |
that. The best advice is th`t alcohol should not be drunk at all | :11:53. | :11:56. | |
Joan pregnancy. Because different mothers react to it very | :11:57. | :12:02. | |
differently. There has been inadequate publicity over that | :12:03. | :12:11. | |
regulation which I welcome because there has been decades of confusing | :12:12. | :12:17. | |
advice ever that topic. One or two other points I would like to refer | :12:18. | :12:20. | |
to, which have been mentiondd already that I would like to add to | :12:21. | :12:25. | |
add my support. And then a final issue I would like to mention which | :12:26. | :12:29. | |
is still to do which we havd to briefly address. Today a qu`rter of | :12:30. | :12:37. | |
a million miscarriages occur every year and it is not only the women | :12:38. | :12:42. | |
who feel the loss but also fathers, grandparent and the wider f`mily who | :12:43. | :12:48. | |
grieve. They need help as wdll. Now, statistics cannot compare whth the | :12:49. | :12:54. | |
power of personal experiencd such as those we have heard today. But to | :12:55. | :12:58. | |
frame some of the goblins encountered by women who miscarry, | :12:59. | :13:05. | |
-- the problems encountered, I have been aware of the survey of 300 | :13:06. | :13:08. | |
women carried out by the miscarriage Association who found that 45% of | :13:09. | :13:12. | |
the women date survey did not feel well informed about what was | :13:13. | :13:17. | |
happening to them physicallx. Only 29% felt well care for emothonally. | :13:18. | :13:23. | |
And nearly four out of five received no after-care at all. They noted | :13:24. | :13:30. | |
that access to information `nd emotional support has been shown | :13:31. | :13:35. | |
time and time again to help people cope with the experience of loss but | :13:36. | :13:40. | |
this needs to be made avail`ble later if needed. They also noted | :13:41. | :13:44. | |
that sometimes it was not always important what was said to reading | :13:45. | :13:49. | |
women, but it was just enough that someone was listening that was | :13:50. | :13:53. | |
and hearing so many individtal and hearing so many individtal | :13:54. | :13:56. | |
experiences, I hope that we in the experiences, I hope that we in the | :13:57. | :14:00. | |
House will show to the nation that we are listening and we card. | :14:01. | :14:05. | |
Speaking out about the issud which is also being raised, which is how | :14:06. | :14:09. | |
an unborn child is treated before an unborn child is treated before | :14:10. | :14:14. | |
the 24 week stage, as we have hurt when a woman has had a misc`rriage, | :14:15. | :14:18. | |
she can be at an extremely vulnerable state. As my constituent | :14:19. | :14:27. | |
said, women may well offer not be in hospital, in fact only 18% of | :14:28. | :14:32. | |
miscarriages occur in hospital. The hospital is going to ring up the | :14:33. | :14:38. | |
hospital -- the mother is going to ring up the hospital with advice | :14:39. | :14:42. | |
what to do, particularly on what to do with their miscarried chhld. I'm | :14:43. | :14:49. | |
extremely concerned to hear that someone from trust set up to | :14:50. | :14:56. | |
experience baby loss has told Mike office recently that she sthll | :14:57. | :15:00. | |
who have been given the advhce to who have been given the advhce to | :15:01. | :15:06. | |
put the miscarried foetuses in a jar put the miscarried foetuses in a jar | :15:07. | :15:13. | |
in the fridge. This is extrdmely distressing and traumatising for | :15:14. | :15:17. | |
families. Some women have h`d to buy a new fridge after such events | :15:18. | :15:21. | |
because it has upset them so much. Hospital mortuary 's need to be | :15:22. | :15:26. | |
available for the foetus of the unborn child to be properly taken to | :15:27. | :15:32. | |
and stored. At the advice of parents, and the staff taking such | :15:33. | :15:33. | |
calls me to have training across the calls me to have training across the | :15:34. | :15:41. | |
board to be away with this. -- aware of this. More trees need to be open | :15:42. | :15:45. | |
seven days a week and it is important that the directivd is | :15:46. | :15:50. | |
coming from government and ht is not left to trusts to come up whth their | :15:51. | :15:55. | |
own systems as it is clearlx unsatisfactory. I know the hssue has | :15:56. | :16:01. | |
been raised about stillbirths and people having to be in wards with | :16:02. | :16:07. | |
celebrating families, but there is also the issue of women who have | :16:08. | :16:10. | |
suffered miscarriage and often the early care pregnancy is in one unit | :16:11. | :16:19. | |
and certainly, when... When I had a miscarriage at 16 weeks, I had to | :16:20. | :16:25. | |
sit next to women who had scanned photographs. It was very, vdry | :16:26. | :16:31. | |
difficult. And it is somethhng that has to be considered more sdriously | :16:32. | :16:38. | |
by medical staff. She makes an extremely good point. It is | :16:39. | :16:44. | |
absolutely vital that we support women in appropriate circumstances | :16:45. | :16:48. | |
members have mentioned. Womdn who members have mentioned. Womdn who | :16:49. | :16:50. | |
have lost their babies but need to have lost their babies but need to | :16:51. | :16:55. | |
go through labour, the issud of a separate award should be a priority. | :16:56. | :17:02. | |
They may be in labour for sdveral days, and to hear other womdn around | :17:03. | :17:06. | |
with their babies must be so distressing. Hospitals need to | :17:07. | :17:12. | |
create better spaces for wolen at all stages in their pregnancies I | :17:13. | :17:17. | |
permission, some of my own permission, some of my own | :17:18. | :17:24. | |
experience on that note, I was as I told the House earlier, in hospital | :17:25. | :17:27. | |
for some considerable time because I had been very ill. After I was in | :17:28. | :17:33. | |
ward, postnatal ward with pdople ward, postnatal ward with pdople | :17:34. | :17:36. | |
with babies. I was in a sep`rate room but I had to share the bathroom | :17:37. | :17:38. | |
and the midwives and all thd staff and the midwives and all thd staff | :17:39. | :17:43. | |
with mothers with live babids. And I found it terribly difficult when | :17:44. | :17:50. | |
people came in, nice people bringing you cups of tea and food, bringing | :17:51. | :17:54. | |
you all sorts of things that have not been told and people repeatedly | :17:55. | :17:58. | |
asked me where the baby was. Which was so distressing. My heart goes | :17:59. | :18:06. | |
out to the honourable member. How unnecessary, added grief is being | :18:07. | :18:07. | |
compounded in such situations. Families have lost babies speaking | :18:08. | :18:18. | |
about the knowledge and for their child's life. And unfortunately | :18:19. | :18:24. | |
this is an area where the l`w adds to the distressed to. Because under | :18:25. | :18:31. | |
current UK law, babies are effectively considered a person at | :18:32. | :18:36. | |
24 weeks, this means that often that acknowledgement is not therd as it | :18:37. | :18:40. | |
could be. I have even heard of parents lying about the gestation | :18:41. | :18:44. | |
period in order to try and obtain a birth certificate, and I do add my | :18:45. | :18:49. | |
appeal to that of other honourable members, to ask ministers to look | :18:50. | :18:54. | |
again particularly at the f`ct that obviously now, as modern technology | :18:55. | :18:58. | |
has improved, unborn babies are increasingly viable, the law should | :18:59. | :19:08. | |
move not only with technology, and I would ask ministers to look at this | :19:09. | :19:13. | |
too. This one last point I would like to mention, it is very | :19:14. | :19:21. | |
sensitive. There is this to boo I mentioned earlier, as one colleague | :19:22. | :19:24. | |
also said earlier in this ddbate, if there is one thing that we can do in | :19:25. | :19:30. | |
this house, it is to break taboos. And this is the fact that p`rents | :19:31. | :19:34. | |
can also suffer a deep sensd of loss and bereavement. When their long | :19:35. | :19:40. | |
fall child is not lost during pregnancy, during a miscarrhage but | :19:41. | :19:47. | |
due to a disability being dhagnosed while their child is in the room | :19:48. | :19:56. | |
leading them to have a heartbreaking condition for a termination | :19:57. | :20:01. | |
sometimes in pregnancy. There is little if any brief in support or | :20:02. | :20:04. | |
adequate counselling before they make that decision or somethme after | :20:05. | :20:11. | |
for such parents. Yet they too have lost a much loved child. In 201 , | :20:12. | :20:17. | |
the pro-life all-party group conducted a detailed year-long | :20:18. | :20:27. | |
Inquiry, into it. We were rdpeatedly told by witnesses about the lack of | :20:28. | :20:32. | |
proper counselling and bere`ved and care for such parents, should they | :20:33. | :20:38. | |
want it. Which many do. We were also told of some very good examples and | :20:39. | :20:44. | |
practice, one parent talked about they had a funeral service that | :20:45. | :20:47. | |
helped enormously. Another told of how, they were able to bathd their | :20:48. | :20:56. | |
child before the child was then appropriately cared for following | :20:57. | :21:02. | |
the termination. But other witnesses were amazed, that this kind of care | :21:03. | :21:08. | |
was available because they had had none at all. One of our key | :21:09. | :21:12. | |
recommendations in our report was that appropriate breed Mintdrn | :21:13. | :21:16. | |
support and counselling shotld be available for all parents who wanted | :21:17. | :21:21. | |
it in such situations, even if it is sometime later. I regret to say and | :21:22. | :21:27. | |
I'm following slightly in the footsteps of the honourable member | :21:28. | :21:30. | |
for Mid Sussex, who spoke e`rlier about the uphill struggle. Have had | :21:31. | :21:35. | |
an uphill struggle in trying to gain the attention of the Departlent of | :21:36. | :21:40. | |
Health about this issue. And I do thank the honourable members who | :21:41. | :21:44. | |
have raised their losses, in this debate, because I hope now that the | :21:45. | :21:48. | |
Department of Health will consider this, that report was issued in | :21:49. | :21:56. | |
2013. After an adjournment debate, which was led by the honour`ble | :21:57. | :22:00. | |
members for Colchester and headers be which I have referred to. I was | :22:01. | :22:07. | |
deeply moved, I spoke to thd then Minister, that I would send this | :22:08. | :22:11. | |
report to the Department of Health after that debate which I dhd. | :22:12. | :22:17. | |
Unfortunately I received no reply. I sent a reminder sometime later, I | :22:18. | :22:22. | |
received no reply after that at all. I do hope that as a result of | :22:23. | :22:26. | |
today's debate, the Departmdnt of Health will take Cirrus leave this | :22:27. | :22:30. | |
additional point, that parents in this situation too, have thd same | :22:31. | :22:34. | |
kind of care and support as others who have been spoken about hn this | :22:35. | :22:44. | |
debate today. Can I first apologise because I had hoped to be there at | :22:45. | :22:47. | |
the beginning of the debate but we had a 3.5 hour meeting, due to poor | :22:48. | :22:57. | |
chairmanship it dragged on, the chairman was me. I want to picture | :22:58. | :23:02. | |
but to the hard work of the members for edits Briand Colchester, I was | :23:03. | :23:06. | |
lucky to have caught the spdech another very emotional speech. One | :23:07. | :23:12. | |
of many emotional speeches, in an extraordinary well-informed debate, | :23:13. | :23:17. | |
that we have had this afternoon showing the house I think at its | :23:18. | :23:23. | |
best. But also showing some quite extraordinary systemic insensitivity | :23:24. | :23:27. | |
is within the health system. That can only make a tragic outcome even | :23:28. | :23:33. | |
worse for those parents expdriencing the grief of baby lot. And surely, | :23:34. | :23:44. | |
and we must do so much bettdr. This is a big and a partly hidden | :23:45. | :23:52. | |
problem. The rates of pre-and postnatal mortality in this country, | :23:53. | :23:58. | |
are appalling and shameful. We rank forestalled births 33 out of 35 | :23:59. | :24:04. | |
developed nations in the world. One in every 200 babies dies as a result | :24:05. | :24:15. | |
of stillbirth in the UK. 15 times the rate of mortality for cot | :24:16. | :24:20. | |
deaths, an area where we have made huge progress, but also worrying if | :24:21. | :24:24. | |
one looks at the statistics and we have had many statistics so I won't | :24:25. | :24:30. | |
quote more. There is a 25% variance between mortality rates in different | :24:31. | :24:34. | |
parts of the country and th`t is a cause for great concern in htself. | :24:35. | :24:37. | |
We need to do better as a n`tion but certainly we need to be doing much | :24:38. | :24:41. | |
better for certain parts of the country that do not deserve to be | :24:42. | :24:46. | |
lagging behind so far in thd progress that has been made in other | :24:47. | :24:49. | |
parts of the country. It is down to a whole host of reasons that we have | :24:50. | :24:54. | |
heard here, there is poor monitoring, patchy monitoring during | :24:55. | :25:00. | |
pregnancy. There are in parts of the country shortages of midwivds. | :25:01. | :25:04. | |
Specialist midwives. At the end of the day, 4.9 out of every thousand | :25:05. | :25:10. | |
live births, are stillborn. And that figure must come down because it | :25:11. | :25:15. | |
stayed stubbornly high for too many years. So I welcomed the plddge from | :25:16. | :25:19. | |
the Secretary of State for Health earlier in this year in March. When | :25:20. | :25:24. | |
he pledged, that we would sdek to halve the number of maternal and | :25:25. | :25:28. | |
baby deaths by 2013, which hf successful would save some 0500 more | :25:29. | :25:33. | |
lives every year. I welcome the progress that has been made in | :25:34. | :25:38. | |
giving out information, it has been produced to give to all expdctant | :25:39. | :25:43. | |
mothers by week 24. That is too late and for reasons that I will come | :25:44. | :25:51. | |
onto, we need to do better. I pay tribute to the work that has been | :25:52. | :25:55. | |
done on smoking, it is a catse of serious AAB loss. It is attributed | :25:56. | :26:05. | |
to 2200 preterm births, 5000 miscarriages and 300 perinatal | :26:06. | :26:11. | |
deaths. By a self induced poison of smoking and smoking excessively in | :26:12. | :26:15. | |
too many cases during pregn`ncy There has been progress, on the full | :26:16. | :26:23. | |
alcohol Spectrum disorder and the all-party group, produced a report | :26:24. | :26:28. | |
on this recently, we have bden visiting hospitals with the charity | :26:29. | :26:32. | |
that promotes this subject. To give clearer and better advice and | :26:33. | :26:37. | |
high-profile advice to women about what is acceptable and potentially | :26:38. | :26:42. | |
harmful, about these alcohol during pregnancy as well. Progress has been | :26:43. | :26:45. | |
made but a lot more needs to be made. I contrast the lack of | :26:46. | :26:51. | |
progress, on baby loss, with the great progress that has been made on | :26:52. | :26:58. | |
deaths through cot deaths, very high profile campaign, some decades ago | :26:59. | :27:03. | |
now, and that heady huge and very quick effect, now the brief we have | :27:04. | :27:11. | |
had together for short lives. Mentions the appalling figures on | :27:12. | :27:16. | |
Griezmann support and we have heard that, 17% of CCG 's do not | :27:17. | :27:21. | |
commission support, 68% of local authorities do not commission | :27:22. | :27:26. | |
bereavement support, it doesn't just happen in medical environments but | :27:27. | :27:28. | |
home when you're coming into contact with other council services. It just | :27:29. | :27:34. | |
doesn't happen in two thirds of local authorities. But therd is also | :27:35. | :27:40. | |
the psychological bereavement support in the neonatal services or | :27:41. | :27:44. | |
rather the lack of it, and, the bliss figures show that 41% of | :27:45. | :27:48. | |
neonatal unit say that parents have no access to a trained ment`l health | :27:49. | :27:53. | |
worker, 30% of neonatal units say that parents have no access to any | :27:54. | :27:57. | |
psychological support at all. And one third of them that look after | :27:58. | :28:00. | |
the smallest and sickest baby say that their parents have no `ccess to | :28:01. | :28:05. | |
a trade paid mental health worker. This is not just about a bit of tea | :28:06. | :28:10. | |
and sympathy, from harm trahned bereavement support, this is about | :28:11. | :28:15. | |
ongoing trauma. We have heard from the honourable member from | :28:16. | :28:17. | |
Colchester for whom this tr`gedy happened many years ago, th`t is | :28:18. | :28:22. | |
still there. This is not solething that leaves you, that you grow out | :28:23. | :28:26. | |
of when you leave the hospital or when you have fortunately a healthy | :28:27. | :28:32. | |
baby, that this disappears. It doesn't, people deal with it in | :28:33. | :28:37. | |
different ways, and different successes or not. Those counselling | :28:38. | :28:43. | |
services need to be available. The figures for perinatal mental illness | :28:44. | :28:46. | |
are appalling in this country. One in six women will suffer from some | :28:47. | :28:51. | |
form of mental illness, those are the women who are fortunate enough, | :28:52. | :28:57. | |
to go through a healthy babx birth, and we all know the impact that will | :28:58. | :29:02. | |
have on attachment dysfuncthon with that child, and all of the problems | :29:03. | :29:06. | |
that child growing up withott a proper good-quality attachmdnt with | :29:07. | :29:11. | |
his or her primary carer. And we know the cost of not getting that | :29:12. | :29:20. | |
right, as the report, has s`id. It is ?23 billion in each and dvery | :29:21. | :29:24. | |
year. It is a hugely full shck on the wine and she let alone socially | :29:25. | :29:29. | |
not to be doing more about this at those very early stages. Thdre are | :29:30. | :29:33. | |
many charities and we have heard some good examples of charities that | :29:34. | :29:37. | |
step in and help on this front. Particularly with that after | :29:38. | :29:44. | |
support. As my honourable friend mentioned earlier, this isn't just | :29:45. | :29:50. | |
up to the NHS, there is a vdry good charity that has approached me, that | :29:51. | :29:55. | |
provides free comfort, to bdreaved parents to support the ment`l health | :29:56. | :29:59. | |
and healing after the loss of a baby during pregnancy. But, | :30:00. | :30:05. | |
significantly, the bears th`t they give out is a gift from another | :30:06. | :30:08. | |
family that has experience the loss of the baby, so the parents know | :30:09. | :30:12. | |
that they are not alone. And each bear has a label attached whth the | :30:13. | :30:16. | |
information about the charity and signpost to other charities, and all | :30:17. | :30:20. | |
that is relevant to them. Thank goodness there are charities doing | :30:21. | :30:24. | |
work like this, but frankly it shouldn't be down to them to be | :30:25. | :30:29. | |
relied upon, to produce somd pretty basic essential health and social | :30:30. | :30:36. | |
welfare care, to mums and d`ds, add the relevant point in their lives. I | :30:37. | :30:41. | |
just want to Major, on and H thought I would be upstaged by my honourable | :30:42. | :30:46. | |
friend, the member for Conn`ughton, by resurrecting my private lembers | :30:47. | :30:52. | |
bill, the registration of stillbirths bill, which I l`unched | :30:53. | :30:57. | |
in his house on the 14th of January 2014 with cross-party support. I | :30:58. | :31:05. | |
just want to reheat some of its contents, it hasn't come to law | :31:06. | :31:08. | |
surprise surprise but I think it is just as essential and it shows why, | :31:09. | :31:12. | |
this is something that we could do without the advances of medhcal | :31:13. | :31:17. | |
science, without huge cost but could have a huge impact on giving some | :31:18. | :31:22. | |
comfort and closure, to the many thousands of our constituents that | :31:23. | :31:26. | |
go through some of the can sit things that we have heard too today. | :31:27. | :31:30. | |
So I brought in a private mdmbers bill which would have amenddd the | :31:31. | :31:35. | |
births and deaths registrathon act 1953 to provide the parents, to | :31:36. | :31:38. | |
register the death of a child still born before the threshold of 24 | :31:39. | :31:43. | |
weeks of gestation. Arbitrary, 4 weeks. If you happen to havd given | :31:44. | :31:51. | |
birth to a stillborn trialldd after 23 weeks, six days, and 23 hours, | :31:52. | :31:56. | |
that child never existed in the eyes of the state. That child is to all | :31:57. | :32:01. | |
intents and purposes a misc`rriage. If that child had clung on for an | :32:02. | :32:05. | |
other couple of hours of behng stillborn and gone beyond that 4 | :32:06. | :32:11. | |
week threshold, it would be a child in the eyes of the state. That is an | :32:12. | :32:16. | |
extraordinary anomaly in thd law that we need to address. So some | :32:17. | :32:23. | |
experience as we have heard, lost through miscarriage, some ghve birth | :32:24. | :32:26. | |
routinely but express the p`in of losing a child within days, weeks or | :32:27. | :32:30. | |
months and Sunday through all of the trials and tribulations of | :32:31. | :32:34. | |
pregnancy, only to give birth to a stillborn child. That is thd target, | :32:35. | :32:41. | |
of my bill, to help those p`rents. We have heard of the problels, we | :32:42. | :32:46. | |
still have. But I think the situation is made worse for those | :32:47. | :32:50. | |
parents that have stillborn children for 24 weeks. | :32:51. | :32:57. | |
Because of that arbitrary fhgure. Because of it, there are no central | :32:58. | :33:02. | |
records on exactly how many figures are born in that way so thex do not | :33:03. | :33:07. | |
form part of the mortality figures. So the position we have been talking | :33:08. | :33:11. | |
about in stillbirth is even worse than we appreciate because of those | :33:12. | :33:15. | |
born before 24 weeks. Withott wishing in any way to downplay the | :33:16. | :33:19. | |
importance and pain of a miscarriage, particularly for new | :33:20. | :33:23. | |
parents struggling to have their first child, those experiences are | :33:24. | :33:27. | |
different. That was brought home to me most starkly by the storx of a | :33:28. | :33:31. | |
constituent of mine Hayley who came to see me back in 2013, campaigning | :33:32. | :33:36. | |
for the change is a law that I then took up. Hayley was pregnant and for | :33:37. | :33:40. | |
nearly 20 weeks, she carried a child nearly 20 weeks, she carried a child | :33:41. | :33:47. | |
of her and her partner. She felt the baby kicking, she went to all the | :33:48. | :33:51. | |
other ups and downs of a first-time pregnancy. Sadly after 19 wdeks | :33:52. | :33:54. | |
something went wrong and thd baby died unborn. It was not a | :33:55. | :33:59. | |
miscarriage, and the followhng week Hayley had to go through thd pain of | :34:00. | :34:03. | |
giving birth to a baby that she knew was no longer alive. She had to take | :34:04. | :34:08. | |
powerful drugs to induce a pregnancy, she explains | :34:09. | :34:13. | |
contractions, she went into Worthing Hospital and had pain relief, | :34:14. | :34:21. | |
Worthing Hospital is the safest maternity unit in the country and we | :34:22. | :34:25. | |
are very proud of it. Many thousands of my constituents marched to save | :34:26. | :34:34. | |
it in 2008 as the PCT idiothcally did not think we needed it. Despite | :34:35. | :34:40. | |
having the oldest population of the country if not the universe in | :34:41. | :34:44. | |
start of life facilities in Worthing start of life facilities in | :34:45. | :34:45. | |
and we aren't thankful for that -- and we aren't thankful for that -- | :34:46. | :34:52. | |
we are grateful for that. The following day Hayley gave bhrth to | :34:53. | :34:57. | |
her baby, Samuel, she gave him a name, she held sandal in her arms | :34:58. | :34:58. | |
and she and her partner took and she and her partner took | :34:59. | :35:03. | |
photographs, had his hand and foot prints taken and said their | :35:04. | :35:09. | |
goodbyes. Fortunately she w`s given good supplier by the clinic`l staff | :35:10. | :35:12. | |
and they had good bereavements guidance. She had an understanding | :35:13. | :35:19. | |
employer and she found a sylpathetic funeral director and a funeral took | :35:20. | :35:22. | |
place two weeks later. To all intents and purposes, Haylex with | :35:23. | :35:26. | |
her partner went to all the expenses of policy and the pain of childbirth | :35:27. | :35:29. | |
enjoyed by any other mother. But they were coupled in this c`se with | :35:30. | :35:33. | |
the unimaginable grief of a parent who has just lost a child bdfore | :35:34. | :35:37. | |
they could ever get to know him She did not just go through stillbirth, | :35:38. | :35:41. | |
she had a still baby. She bdcame a mum. The crucial difference is that | :35:42. | :35:47. | |
Hayley and Fraser's baby is not recognised in the eyes of the state. | :35:48. | :35:51. | |
Because she was born before 24 weeks gestation. As I say, if she had been | :35:52. | :35:57. | |
born, if he had been born after 24 weeks and one day come he would have | :35:58. | :36:01. | |
been recognised and the death properly registered as a sthllbirth | :36:02. | :36:09. | |
forming the statistics. It would have been an acknowledgement of an | :36:10. | :36:13. | |
actual individual life, and to add further insult to injury, H`yley had | :36:14. | :36:18. | |
to hand back her maternity dxemption certificate straight after going | :36:19. | :36:26. | |
back through this experiencd. When I mentioned this bill, I got ` wave of | :36:27. | :36:30. | |
experiences, extraordinary `nd tragic experiences from mums and | :36:31. | :36:32. | |
dads around the country, including one where a woman had twins and one | :36:33. | :36:39. | |
of the twins was born stillborn before 24 weeks and the othdr twins | :36:40. | :36:43. | |
survived and was born stillborn tragically after judge for weeks but | :36:44. | :36:52. | |
she only had one maybe -- b`by in the eyes of the law. How absurd is | :36:53. | :36:57. | |
that? That is why the law ndeds to be changed. That stark diffdrence | :36:58. | :37:02. | |
cannot be right. It adds insult to the unimaginable pain that the | :37:03. | :37:07. | |
parents have already had to suffer. Until the passing of the sthllbirth | :37:08. | :37:11. | |
definition act of 1992, the threshold was 28 weeks, and bragged | :37:12. | :37:14. | |
unrecognised in official -- prior to unrecognised in official -- prior to | :37:15. | :37:20. | |
that even more babies went unrecognised in official records. | :37:21. | :37:25. | |
That followed a change in the official medical advice of where | :37:26. | :37:28. | |
babies were viable, and since then babies have been born beford 24 | :37:29. | :37:33. | |
weeks and survived. It is true that there is an informal procedtre for | :37:34. | :37:39. | |
hospitals to offer commemor`tive certificates for babies that are not | :37:40. | :37:43. | |
classified as stillbirth, it records the birth before 24 -- 24 wdeks and | :37:44. | :37:53. | |
Sands has produced a template for this certificate. However it is | :37:54. | :37:55. | |
unofficial and still counts for nothing in the eyes of the state. | :37:56. | :38:00. | |
Since I did that Bill, therd has Since I did that Bill, therd has | :38:01. | :38:05. | |
been a happy ending cos Hayley and Fraser had a bonny baby daughter | :38:06. | :38:11. | |
called Bonnie. And she is wdll and healthy I am delighted to s`y. My | :38:12. | :38:17. | |
recognition and registration of recognition and registration of | :38:18. | :38:22. | |
stillborn babies below 24 wdeks gestation, it would be not be based | :38:23. | :38:26. | |
on a crude time threshold of what is deemed a viable foetus but on the | :38:27. | :38:30. | |
experience of giving birth. Hayley and Fraser's baby would be | :38:31. | :38:33. | |
recognised as having existed, Samuel's death would have bden | :38:34. | :38:36. | |
registered and that would go some way to providing some comfort to | :38:37. | :38:41. | |
parents such as Hayley and Fraser in and unimaginable the painful time. | :38:42. | :38:47. | |
I'm grateful he has taken intervention. The issues around | :38:48. | :38:58. | |
registration and that line of between miscarriage and stillbirth | :38:59. | :39:01. | |
is something that was brought up by parents in the digital debate that | :39:02. | :39:09. | |
we had lined on Monday. And the difficulty of parents having to go | :39:10. | :39:13. | |
to a registry office to reghster the birth and death with parents there | :39:14. | :39:22. | |
with babies having to explahn that to a registrar, it is very | :39:23. | :39:26. | |
distressing. I think the Liverpool women's Hospital has the abhlity to | :39:27. | :39:30. | |
do those registrations in the hospital and the Minister m`y want | :39:31. | :39:33. | |
to look at that good practice. I very much support what my honourable | :39:34. | :39:40. | |
friend as saying. The soluthon to this are not rocket science quite | :39:41. | :39:45. | |
frankly. A bit more sensitivity and common sense would go a long way to | :39:46. | :39:48. | |
alleviating an awful lot of pain and trauma. So my suggestion, mx bill, a | :39:49. | :39:56. | |
variation of my bill, would go some way to providing some comfort to | :39:57. | :40:01. | |
parents such as Hayley and Fraser at this time. It will also provide more | :40:02. | :40:06. | |
data to aid the analysis of why stillbirth happen and what can be | :40:07. | :40:09. | |
done to jump-start a resumption in the falling numbers from thd last | :40:10. | :40:13. | |
decade's plateau. For those who say that the physical act of registering | :40:14. | :40:18. | |
a child alongside those reghstering a healthy birth could open tp wounds | :40:19. | :40:25. | |
and exacerbating the grief of the parents, I assure a discreet process | :40:26. | :40:32. | |
could be devised. This has nothing to do with the law of aborthon or | :40:33. | :40:40. | |
maternity benefits, although I think official recognition would lake it | :40:41. | :40:44. | |
easier to secure appropriatd flexibly from employers. Thd | :40:45. | :40:48. | |
government have already madd changes to maternity guidance so th`t | :40:49. | :40:54. | |
mothers whose babies are born after two to four weeks get the bdnefits | :40:55. | :40:56. | |
they are entitled to it -- to four they are entitled to it -- to four | :40:57. | :41:02. | |
weeks are entitled to benefhts and they get them easier. The bhll is | :41:03. | :41:08. | |
going slowly, I am grateful to the former member for Ipswich whth his | :41:09. | :41:12. | |
clinical experience he recognised the problems in this area. He worked | :41:13. | :41:17. | |
with me and with other royal colleges and we had a stillbirth | :41:18. | :41:20. | |
roundtable at Richmond housd at the roundtable at Richmond housd at the | :41:21. | :41:24. | |
beginning of 2015 involving the world courage of obstetrici`ns and | :41:25. | :41:29. | |
gynaecologists, midwifes, S`nds the NHS England and everyone relevant. | :41:30. | :41:34. | |
And I think we found a way `head because this is a hugely context | :41:35. | :41:42. | |
area, not easy to sole. A ndw law came in in New South Wales hn | :41:43. | :41:49. | |
Australia where they issued a formal recognition of a certificatd which | :41:50. | :41:55. | |
of loss Certificate. If we had of loss Certificate. If we had | :41:56. | :42:03. | |
something like that we could get back on track with this problem | :42:04. | :42:06. | |
This is something that should not happen. This is something that | :42:07. | :42:11. | |
medical technology and innovation is not required to solve. It is | :42:12. | :42:16. | |
something that will not be subject to the restraints and constraint of | :42:17. | :42:21. | |
funding, we may have or not within the National Health Service. It is | :42:22. | :42:25. | |
just a bit of common sense `dmin, but a really important bit of common | :42:26. | :42:29. | |
sense admin, facility who h`s had to go through that dramatic experience. | :42:30. | :42:34. | |
So in paying tribute to the extraordinary testimonies wd have | :42:35. | :42:38. | |
had today for people far more experts and people who have had far | :42:39. | :42:41. | |
more first-hand experience that massively I have not had, c`n I | :42:42. | :42:45. | |
gently ask the minister if he will put this back on the agenda as part | :42:46. | :42:48. | |
of improving the whole issud of baby of improving the whole issud of baby | :42:49. | :42:54. | |
loss because I think we could do an awful lot of good for an awful lot | :42:55. | :42:57. | |
of our constituents if we c`n just get this one simple thing done | :42:58. | :43:04. | |
properly. Thank you, Madam Deputy Speaker. First of all correct start | :43:05. | :43:11. | |
by congratulating the Honourable members for Eddisbury and Colchester | :43:12. | :43:14. | |
for securing this debate and I pay tribute to their courage and | :43:15. | :43:17. | |
speaking soap meets -- memorably about their personal experidnces. I | :43:18. | :43:24. | |
think it is great character that they have done all they can to get | :43:25. | :43:30. | |
help for others and hearing from other members and their | :43:31. | :43:35. | |
constituents. I would like to commend the work they have done | :43:36. | :43:43. | |
along with others forming the group on baby loss which has made an | :43:44. | :43:46. | |
important contribution both addressing baby loss and offering | :43:47. | :43:49. | |
this happens. What this is the first this happens. What this is the first | :43:50. | :43:52. | |
time we have discussed baby loss in the main chamber, this is the third | :43:53. | :43:57. | |
occasion that I have responded to a debate on this in the last xear I | :43:58. | :44:01. | |
think each occasion has shown the House at its absolute best. I would | :44:02. | :44:05. | |
just like to take a few minttes to go through some of the very | :44:06. | :44:08. | |
compelling contribution to have had from Honourable members tod`y. | :44:09. | :44:12. | |
Beginning with the honourable member from Eddisbury, she has talked about | :44:13. | :44:17. | |
how there was a lack of recognition that having a miscarriage c`n | :44:18. | :44:21. | |
increase feelings of loneliness and isolation. I am sorry to he`r that | :44:22. | :44:27. | |
the lack of understanding pdople have had when they have been cocked | :44:28. | :44:30. | |
miscarriage, I know from my own miscarriage, I know from my own | :44:31. | :44:35. | |
experience there is an opponent propensity to -- there is an | :44:36. | :44:38. | |
intensity to put miscarriagd down as one of those things, and we have | :44:39. | :44:43. | |
heard that today. The honourable member made very powerful comments | :44:44. | :44:45. | |
that most parents just want to make sure that whatever has happdned does | :44:46. | :44:50. | |
not happen again. I think there is a recognition that too often numbers | :44:51. | :44:53. | |
of members have talked about this, parents feel they do not have the | :44:54. | :44:56. | |
answer is that they need. The statistic that she revealed that 25% | :44:57. | :45:02. | |
of maternity hospitals do not have proven suite is disappointing and I | :45:03. | :45:04. | |
feel we have heard that timd and again today how various members feel | :45:05. | :45:13. | |
that has been a welcome devdlopment in lots of maternity units. I know | :45:14. | :45:17. | |
from the ones I have visited up and down the country what a valtable | :45:18. | :45:21. | |
contribution those sweet have made. They are often coming from local | :45:22. | :45:28. | |
fundraising after tragic circumstances but they often have | :45:29. | :45:31. | |
significant input from parents who have suffered grief themselves and I | :45:32. | :45:36. | |
hope we should all agree we came to get one in every maternity tnit I | :45:37. | :45:41. | |
think one hour of bream and training for midwifes is not enough `nd the | :45:42. | :45:44. | |
issue of training support c`me through -- bereavement training And | :45:45. | :45:50. | |
there is plenty of good practice that we should spread across the | :45:51. | :45:54. | |
country. Her comment about ` treatment pathway is a very | :45:55. | :45:57. | |
important pathway treatment pathway is a very | :45:58. | :46:06. | |
important and I know that S`nds is doing some good work there. The | :46:07. | :46:11. | |
honourable member for Colchdster spoke from his personal expdrience | :46:12. | :46:13. | |
with great passion and knowledge about what he believes should be | :46:14. | :46:18. | |
done, he is right that nobody who suffers a bereavement have to go | :46:19. | :46:21. | |
back onto a maternity ward. He was right to say that there are far | :46:22. | :46:25. | |
that we have bereavement suhte that we have bereavement suhte | :46:26. | :46:30. | |
more work to understand why there more work to understand why there | :46:31. | :46:34. | |
are such disparities across the regions and different ethnic groups | :46:35. | :46:36. | |
as to why some of these sittations occur. I think the point yot made | :46:37. | :46:44. | |
that a mother can centred something is not right is very powerftl and we | :46:45. | :46:51. | |
should always stress that it is important to seek medical advice if | :46:52. | :46:54. | |
there is any doubt. He is rhght that every stillbirth is something that | :46:55. | :47:00. | |
we should learn from and evdry neonatal death is something that we | :47:01. | :47:04. | |
should learn from. We need consistency across the bere`vement | :47:05. | :47:08. | |
pathway, right across the NHS. I wish him success with his private | :47:09. | :47:12. | |
members bill on bereavement leave, we know the odds of those stcceeding | :47:13. | :47:17. | |
are not great but perhaps the comments that have been madd today | :47:18. | :47:21. | |
in no doubt the eloquent case he will make in support of the bill | :47:22. | :47:24. | |
will persuade the government to bring forward legislation of their | :47:25. | :47:29. | |
own. My honourable friend the member for Hayward spoke with her dxponent | :47:30. | :47:36. | |
of the health service, she gave some experiences of best practicd but | :47:37. | :47:40. | |
also told of the struggle of some of her constituents trying to get | :47:41. | :47:47. | |
answers over the death of hdr daughter. The honourable melber for | :47:48. | :47:56. | |
Mid Sussex talked about the cause of infection and one baby at a | :47:57. | :47:59. | |
developer infection, it is shocking that that that statistic is out | :48:00. | :48:08. | |
there as it is preventable. He also mentioned childhood/ and I look | :48:09. | :48:19. | |
forward to hearing more on that The honourable member who bravely told | :48:20. | :48:22. | |
us about Kenneth who would have been seven on Saturday, she made the | :48:23. | :48:25. | |
point that very often peopld do not know what to say in the | :48:26. | :48:28. | |
circumstances that she found herself in so they say nothing at all. One | :48:29. | :48:32. | |
can help that the more membdrs talk about these issues, the mord those | :48:33. | :48:37. | |
situations will cease to happen She also said the response that she had | :48:38. | :48:41. | |
that it was just one of those things was just not good enough. Btt she | :48:42. | :48:45. | |
talked about the culture of secrecy and the pulling down of shutters | :48:46. | :48:50. | |
that cannot help bereaved p`rents looking for answers. | :48:51. | :49:01. | |
She talked about her campaign to get Hull City Council to conduct an | :49:02. | :49:08. | |
integrating quarry, and widdspread practice which was initiallx | :49:09. | :49:12. | |
successful, she is right to be furious about the U-turn th`t has | :49:13. | :49:16. | |
taken place without any consultation warning and we certainly support her | :49:17. | :49:20. | |
campaign to have that Inquiry reinstated and we hope that the | :49:21. | :49:26. | |
Secretary of State, will look into this and make representations to the | :49:27. | :49:30. | |
Secretary of State for Justhce. The young member for Banbury, t`lked | :49:31. | :49:35. | |
about her experiences, the public's interaction with services is that | :49:36. | :49:38. | |
people have to tell their story again and again and again, that is | :49:39. | :49:43. | |
widespread across many publhc services. She stressed the | :49:44. | :49:46. | |
importance of relationship counselling, and very least, the | :49:47. | :49:49. | |
evaluation of how the treatlent affected. She spoke with grdat | :49:50. | :49:52. | |
knowledge about the importance of getting cremation right, I was | :49:53. | :49:56. | |
pleased to hear that there hs now a working group looking at thdse | :49:57. | :50:00. | |
issues and I think it is a very positive development. The honourable | :50:01. | :50:04. | |
member for Gallas said, that awareness | :50:05. | :50:15. | |
was the key to tackling this issue, he spoke with great sincerity about | :50:16. | :50:19. | |
he and his wife felt that they couldn't speak about their loss | :50:20. | :50:21. | |
such was the stigma surrounding that. He was right that the medical | :50:22. | :50:24. | |
advice, was simply just not acceptable. The honourable lember | :50:25. | :50:26. | |
for Brock Stowe talked about her constituents, talking about the fact | :50:27. | :50:28. | |
that there was no bereaved `nd sweet. She described it as `lmost | :50:29. | :50:32. | |
cruel that they have to be hn close proximity to those who have had a | :50:33. | :50:35. | |
successful birth and we can understand where that comes from. | :50:36. | :50:40. | |
The honourable member for Congleton highlighted the experience of their | :50:41. | :50:43. | |
constituents and the lack of joined up communication when dealing with | :50:44. | :50:47. | |
bereaved parents. Some very disturbing statistics about the | :50:48. | :50:50. | |
miscarriage survey that was undertaken where four or five women | :50:51. | :50:54. | |
got no after-care at all, thinking today about how important it is that | :50:55. | :50:58. | |
we do get that support as often as we can. We also heard from the | :50:59. | :51:03. | |
member from East Worthing and Shoreham, who spoke with grdat | :51:04. | :51:07. | |
knowledge, talking about thd shocking statistic, that many of | :51:08. | :51:11. | |
them don't commission bereaved men support. And statistics abott the | :51:12. | :51:16. | |
lack of access to mental he`lth comedies right in that it doesn t | :51:17. | :51:20. | |
just fade away, ongoing support is needed for parents. Andy pager the | :51:21. | :51:24. | |
many charities that provide support and he's right, they don't just need | :51:25. | :51:33. | |
to rely on charities, that's right. And the legal absurdity, about 4 | :51:34. | :51:36. | |
weeks in the classification and I think you made a compelling case | :51:37. | :51:42. | |
today. And finally in terms of contributions in particular, I want | :51:43. | :51:44. | |
to pay tribute to the outst`nding contribution of my honourable friend | :51:45. | :51:49. | |
from Lewisham, she showed incredible courage to tell us about her | :51:50. | :51:53. | |
daughter Veronica and we cotld all feel the pain that she must have | :51:54. | :51:56. | |
felt every day for the last 23 years when she spoke about it, I think | :51:57. | :52:01. | |
that we all admire the bravdry, talking about this today, I'm sure | :52:02. | :52:05. | |
that Veronica will be as proud, as we all are today. So Madam Deputy | :52:06. | :52:12. | |
Speaker, moving to the substance of the debate, we know that thhs has | :52:13. | :52:19. | |
coincided with baby loss aw`reness week and we have heard therd is an | :52:20. | :52:22. | |
opportunity for bereaved parents, families and friends across the | :52:23. | :52:27. | |
world to unite, and I would like to add my voice to the chip is paid to | :52:28. | :52:31. | |
the many charities who do so much to support families in what is possibly | :52:32. | :52:36. | |
the most challenging time, `nd I did think any member could be in any | :52:37. | :52:40. | |
doubt as to how difficult that is, having heard the many contrhbutions. | :52:41. | :52:44. | |
I know the honourable member for Colchester did not want to start | :52:45. | :52:47. | |
singling out particularly charities but I will name for. Sounds, and | :52:48. | :52:55. | |
antenatal choices do excelldnt work. It is a demonstration of thd | :52:56. | :52:58. | |
importance during baby loss awareness week, as to every week we | :52:59. | :53:02. | |
know that a hundred families will experience one of the biggest rash | :53:03. | :53:06. | |
tease of their lives, an avdrage of 15 stillbirths occur each and every | :53:07. | :53:11. | |
day. We have heard from members that stillbirth is a taboo subject that | :53:12. | :53:15. | |
many find difficult to disctss. I think many are beginning to change | :53:16. | :53:19. | |
that. We have it to the famhlies to change this and I know that today's | :53:20. | :53:23. | |
debate is a valuable part of the process. The loss of 100 lives per | :53:24. | :53:28. | |
week in any circumstances is a tragedy and the kind of figtre where | :53:29. | :53:31. | |
it is happening in a partictlar industry would no doubt lead to a | :53:32. | :53:35. | |
cause for action. That is why, we have heard, the words about personal | :53:36. | :53:41. | |
experiences that are as important as brave. I followed with great | :53:42. | :53:47. | |
interest, the baby loss deb`te, showed in facilitating that debate. | :53:48. | :53:52. | |
This opportunity for members of the public to share their views about | :53:53. | :53:56. | |
this issue. And I would likd to put on record my thanks to everxbody | :53:57. | :54:00. | |
taking part. Twitter and social media have had a bit of a rdputation | :54:01. | :54:05. | |
for being unforgiving and cruel but Monday's debate show just how this | :54:06. | :54:09. | |
area can be harnessed to en`ble genuinely thoughtful and me`ningful | :54:10. | :54:13. | |
engagement with the public. One of the key thing in this debatd is that | :54:14. | :54:17. | |
we offer some of the best ndonatal care in the world along with | :54:18. | :54:24. | |
psychological and brief in support. It is also clear, that it doesn t | :54:25. | :54:26. | |
offer excellent care equallx in every area, which is again something | :54:27. | :54:31. | |
that is debated today. Therd is a great deal of coverage across the | :54:32. | :54:35. | |
country. The rate of stillbhrth stuff frankly unacceptable compared | :54:36. | :54:39. | |
to other similar countries. There has been an enormous amount of | :54:40. | :54:42. | |
progress in reducing the rate of stillbirths over the last cdntury | :54:43. | :54:46. | |
but this progress has sadly stalled, indeed according to the Lancet, the | :54:47. | :54:50. | |
annual rate is lower than the vast George of high income countries Our | :54:51. | :54:56. | |
annual rate of reduction has been 1.4% compared to 6.8% in thd | :54:57. | :55:00. | |
Netherlands, we all accept that is not out except to pull level of | :55:01. | :55:04. | |
progress. Their ability may well be one of the key reasons behind that. | :55:05. | :55:08. | |
We certainly welcome the government 's commitment to reduce the rate of | :55:09. | :55:12. | |
stillbirths, and brain injuries that occur soon after the birth by the | :55:13. | :55:18. | |
end of this Parliament and by 5 % by 2030. During the debate we had in | :55:19. | :55:26. | |
June, the previous minister confirmed, the first annual progress | :55:27. | :55:28. | |
report towards meeting thesd targets was due to be published this autumn. | :55:29. | :55:31. | |
Could the minister confirm whether it is still the government 's | :55:32. | :55:34. | |
intention to produce that rdport and when would we expect to see it? | :55:35. | :55:38. | |
Linked to the availability of care, we are to see a reduction of | :55:39. | :55:42. | |
avoidable deaths and to instre that there are safe staffing levdls in | :55:43. | :55:46. | |
neonatal units, the report hn 2 15 found that neonatal units dhd not | :55:47. | :55:52. | |
have enough to meet national standards and 70% of neonat`l | :55:53. | :55:55. | |
intensive care units look after babies and that it is considered | :55:56. | :55:59. | |
safe. Given the strong eviddnce between staffing levels and baby | :56:00. | :56:02. | |
mortality, we have asked thd minister is to step out what steps, | :56:03. | :56:07. | |
we simply will not be able to achieve the government is l`udable | :56:08. | :56:11. | |
aims if we cannot provide staffing levels in neonatal units. One issue | :56:12. | :56:14. | |
that was raised in the debate in June was investigation of | :56:15. | :56:20. | |
stillbirths, at present, coroners do not have the jurists diction, to try | :56:21. | :56:24. | |
and understand exactly why the death occurred. As we heard from lany | :56:25. | :56:29. | |
members today, parents want to know what has gone wrong, and whdther it | :56:30. | :56:32. | |
will happen again. Members from all sides of the debate are encouraged, | :56:33. | :56:38. | |
the previous minister undertook to expand it, and the counterp`rt in | :56:39. | :56:41. | |
the Department of Justice and I would be grateful if the Minister, | :56:42. | :56:46. | |
was able to do that. Madam Deputy Speaker I will conclude by focusing | :56:47. | :56:49. | |
on the family is that so sad experience in treatment and the care | :56:50. | :56:54. | |
of support. This is another area, suddenly there is a great ddal of | :56:55. | :56:59. | |
variability, support and care, that all of us have received, fr`nkly | :57:00. | :57:02. | |
shocking experiences many of which we have heard today. We are | :57:03. | :57:11. | |
grateful, what steps, as wh`t he's going to take in neonatal hdalth. | :57:12. | :57:16. | |
Nobody do has suffered the trauma should have two suffer alond. In | :57:17. | :57:21. | |
conclusion, members from across the house have spoken very bravdly and | :57:22. | :57:25. | |
with great passion about thdir personal experiences, I hopd that | :57:26. | :57:28. | |
following this debate, we whll be able to move forward and continue to | :57:29. | :57:31. | |
break down the taboos and m`ke sure that every family gets the very best | :57:32. | :57:36. | |
in terms of medical support should that situation occur to thel. | :57:37. | :57:39. | |
Families experience the verx worst of times and it offers them the very | :57:40. | :57:51. | |
best. Madam Deputy Speaker H had to say I stand here humble frankly to | :57:52. | :57:57. | |
be responding to this debatd, it is undoubtedly the most moving debate I | :57:58. | :58:00. | |
have participated in in the 11 and a half years I have been in this house | :58:01. | :58:04. | |
and it is an enormous tribute to all of those members that spoken, in | :58:05. | :58:07. | |
particular of their personal experience and I will touch on that | :58:08. | :58:11. | |
in a few moments. I would lhke to start on congratulate my honourable | :58:12. | :58:16. | |
friends, the member for edit Briand for Colchester. He has moved his | :58:17. | :58:21. | |
place, issue is here. Having initiated this debate, parthcularly | :58:22. | :58:24. | |
having done so during baby loss awareness week. I would likd also to | :58:25. | :58:30. | |
commend them, for the remarkable progress they have made, in | :58:31. | :58:34. | |
launching the all-party Parliamentary group on baby loss, | :58:35. | :58:37. | |
for securing the cross-partx support that they have and by making such an | :58:38. | :58:43. | |
unusual impact, through an `ll-party group, compared to, the platter of | :58:44. | :58:49. | |
others that don't manage to achieve a Commons chamber debate within | :58:50. | :58:52. | |
frankly if you months of setting it up. It really is an unusual and | :58:53. | :58:56. | |
impressive achievement by them, and the other officers on both sides of | :58:57. | :59:01. | |
the house. Yesterday honour`ble members from across the house showed | :59:02. | :59:05. | |
tremendous support for the work of the group, on baby loss. And, the, | :59:06. | :59:12. | |
this as has been mentioned by other members of the house, was evidenced | :59:13. | :59:16. | |
by the support from Madam Ddputy Speaker. Mr speed in hosting a | :59:17. | :59:22. | |
reception, in his state rools. Yesterday, attended by, manx of the | :59:23. | :59:28. | |
21 pregnancy and baby loss charities, who are dedicated, to | :59:29. | :59:33. | |
arranging, support and care, for families that go through, this | :59:34. | :59:38. | |
terrible experience. It was awareness raising events, stch as | :59:39. | :59:41. | |
have taken place throughout the week, here in this chamber `nd in | :59:42. | :59:46. | |
this house, indeed on Twittdr, it has been referred to buy durable | :59:47. | :59:52. | |
gentleman Hurley. It helps to raise awareness, for those familids, who | :59:53. | :59:56. | |
suffered this loss, and so often in silence. I think that one of the | :59:57. | :59:59. | |
things that struck me most `bout this debate is the determin`tion of | :00:00. | :00:03. | |
those in particular to have experienced such loss directly or | :00:04. | :00:07. | |
through their families or their constituents. To try to not let this | :00:08. | :00:14. | |
issue remain in the closet. I'll like to start with a view comments | :00:15. | :00:19. | |
on some of the points that have been raised and applaud the contributions | :00:20. | :00:22. | |
and interventions that we h`ve had to date from over 30 honour`ble | :00:23. | :00:26. | |
members who have spoken in their own personal experience and those of | :00:27. | :00:29. | |
their constituents and interestingly although we have had contributions | :00:30. | :00:34. | |
from 17 backbench women, we have also had contributions from 13 | :00:35. | :00:39. | |
backbench men, some of whom, have had personal direct experience as | :00:40. | :00:45. | |
well. And, as has been said earlier, I think the moving commentary of the | :00:46. | :00:53. | |
experience in particular of the honourable members who have not | :00:54. | :00:57. | |
raised this issue in public in this place before, the honourabld member | :00:58. | :01:00. | |
for Lewisham Deptford, the honourable member for North Ayrshire | :01:01. | :01:04. | |
and Arran, the honourable mdmber for Banbury who I think may havd touched | :01:05. | :01:09. | |
on it before but made anothdr moving contribution, and the honourable | :01:10. | :01:13. | |
member for Gower. Who I havdn't heard talk on this before, `nd | :01:14. | :01:16. | |
indeed the honourable member for Glasgow North West as well. Such | :01:17. | :01:24. | |
personal testament it, obviously touches the heart strings, of | :01:25. | :01:28. | |
everyone who hears it. And there was barely a dry eye in the house when | :01:29. | :01:34. | |
they were speaking, and I think that plays due tribute, to their bravery | :01:35. | :01:39. | |
and courage, in making so clear the pain that they went through. Some | :01:40. | :01:45. | |
quite recently and some years ago, and of course foremost among those | :01:46. | :01:52. | |
are headers Briand Colchestdr, who brought this so vividly to our | :01:53. | :01:56. | |
attention with their speechds nearly 12 months ago. I am not going to go | :01:57. | :02:02. | |
through every single contribution that has been made but I will try to | :02:03. | :02:07. | |
refer to many in my remarks. And indeed in particular I would like to | :02:08. | :02:11. | |
also pay tribute to the opposition front bench spokesman and hhs very | :02:12. | :02:15. | |
thoughtful contributions, and we have just heard and the spirit in | :02:16. | :02:20. | |
which she has made his remarks. I will try and address most of the | :02:21. | :02:24. | |
questions he has made as I continue. I will just before I forget, address | :02:25. | :02:29. | |
a specific comment made by ly rightful bull friend the melber for | :02:30. | :02:36. | |
Crawley and asked, where, sorry Mid Sussex, who asked, have I got it | :02:37. | :02:40. | |
wrong again. It is Mid Sussdx? Thank you. It is in the South. He asked | :02:41. | :02:50. | |
where are we going in looking to screen for group B Streptococcus. | :02:51. | :02:57. | |
I can reassure him that we `re looking at this as part of ` | :02:58. | :03:04. | |
three-year view review cycld and will be taking new published | :03:05. | :03:08. | |
evidence into account. We are anticipating a public consultation | :03:09. | :03:11. | |
to be held on the topic shortly and I am sure my right honourable friend | :03:12. | :03:12. | |
will want to participate in that and will want to participate in that and | :03:13. | :03:18. | |
one that has been concluded we will then review what recommendations | :03:19. | :03:23. | |
emerge. The loss of the babx is clearly devastating for its parents | :03:24. | :03:28. | |
and the family regardless of when and how the baby death occurred | :03:29. | :03:33. | |
Those experiencing the heartbreak of miscarriage, stillbirth, thd death | :03:34. | :03:37. | |
of an infant or decision to terminate a much wanted pregnancy | :03:38. | :03:40. | |
need our support, kindness `nd acknowledgement that their child was | :03:41. | :03:44. | |
here for a short time and w`s loved. And I have been deeply struck by the | :03:45. | :03:48. | |
comments made about in some cases the lack of sensitivity which can | :03:49. | :03:54. | |
occur when the loss takes place And I think it's absolutely right that | :03:55. | :04:00. | |
we seek from the Department of Health to encourage best pr`ctice | :04:01. | :04:06. | |
across the NHS so that we c`n try to minimise the distress caused by in | :04:07. | :04:11. | |
sensitive conduct by those who are involved in supporting families | :04:12. | :04:17. | |
through this time. Such feelings of loss are real, but as has bden said | :04:18. | :04:21. | |
in particular by my honourable friend for our who explained very | :04:22. | :04:26. | |
dispassionately and clearly, these issues are very often not dhscussed. | :04:27. | :04:32. | |
So many of us do not realisd that on an average day like today in | :04:33. | :04:36. | |
England, around 32 women will be diagnosed with an ectopic pregnancy, | :04:37. | :04:44. | |
15 babies will be born stillborn, eight babies will be born that will | :04:45. | :04:49. | |
die before their first birthday mostly for they are a month old It | :04:50. | :04:52. | |
is important that we discussed the issues around baby loss and the care | :04:53. | :04:55. | |
for those families experiencing such for those families experiencing such | :04:56. | :05:02. | |
a tragedy. I would like to tse the first part of my response to talk | :05:03. | :05:06. | |
about the steps that we are taking with the NHS to reduce stillbirth | :05:07. | :05:11. | |
and then to talk about what we are and then to talk about what we are | :05:12. | :05:14. | |
doing to support families going through the experience of this loss. | :05:15. | :05:19. | |
England is a very safe country in which to have a baby. And it is | :05:20. | :05:23. | |
encouraging that the stillbhrth rate in England has fallen from 4.2 per | :05:24. | :05:34. | |
1000 births in 2011 to 4.4 hn 2 15. In 2014, the neonatal mortality rate | :05:35. | :05:41. | |
was 2.5 deaths per 1000 births and the rate of deaths in babies aged 28 | :05:42. | :05:48. | |
days- one year was 1.1 per 0000 births. Both of these rates have | :05:49. | :05:50. | |
been steadily declining and are now been steadily declining and are now | :05:51. | :05:54. | |
the lowest levels since 1986. There is however as we have clearly heard | :05:55. | :05:58. | |
from every contribution tod`y, more that we can do. And we as a | :05:59. | :06:03. | |
government are determined to do so. It is important that we do not | :06:04. | :06:10. | |
accept all miscarriages, sthllbirth, pregnancy terminations or ndonatal | :06:11. | :06:12. | |
deaths are inevitable or silply nature taking its course as has been | :06:13. | :06:17. | |
touched on by a couple of contributions today, becausd many of | :06:18. | :06:21. | |
them might have been prevented. Compared to other similar countries, | :06:22. | :06:25. | |
our stillbirth rates remain an acceptable. In the Lancet, the | :06:26. | :06:29. | |
stillbirth series published early this year, the UK was ranked 24th | :06:30. | :06:35. | |
out of 49 high income countries The same publication showed that the UK | :06:36. | :06:39. | |
for the great progress in rdducing stillbirth has been slower than most | :06:40. | :06:43. | |
other high income countries. The annual rate of stillbirth rdduction | :06:44. | :06:49. | |
in the UK was 1.4%, compared with 6.8% in the Netherlands. Thhs place | :06:50. | :06:53. | |
is asked, as we heard from the honourable member for aggro to come | :06:54. | :06:59. | |
in the bottom third of the table in -- for Eddisbury, in the bottom | :07:00. | :07:05. | |
third of the table for progress in stillbirth. We also know th`t the | :07:06. | :07:09. | |
rates of death in some high,risk groups are not coming down `nd this | :07:10. | :07:14. | |
was referred to by the honotrable member for Colchester. According to | :07:15. | :07:20. | |
the Twins and multiple births Association, stillbirth ratds for | :07:21. | :07:23. | |
pregnancies involving twins, triplets or more increased by 1 .6% | :07:24. | :07:30. | |
between 2013 and 2014. Multhple births make up 1.5% of pregnancies | :07:31. | :07:35. | |
in the UK, around 12,000 prdgnancies each year, but disproportionate 7% | :07:36. | :07:42. | |
of stillbirth and 14% of neonatal deaths. We want NHS maternity | :07:43. | :07:51. | |
services to be an exemplar of the kind of results we can achidve when | :07:52. | :07:54. | |
we focus on improving safetx. We believe that with a concertdd | :07:55. | :07:58. | |
effort, we can make England one of the safest places in the world to | :07:59. | :08:01. | |
have a baby and that is why last November, the Secretary of State | :08:02. | :08:06. | |
launched a national ambition to half the rate of stillbirth, neonatal | :08:07. | :08:11. | |
deaths, maternal deaths and brain injuries that occur during or soon | :08:12. | :08:16. | |
after birth by 2030, with a shorter term aim of achieving a 20 cents | :08:17. | :08:19. | |
reduction in each of these rates by 2020 and I am glad that this was | :08:20. | :08:24. | |
recognised by my right honotrable friend the member for Eddisbury and | :08:25. | :08:28. | |
I am pleased she will be kedping an eye on the progress that we are | :08:29. | :08:32. | |
making each year in achieving the targets. To support the NHS in | :08:33. | :08:39. | |
achieving this stretching albition, the government has also announced | :08:40. | :08:46. | |
plans for investment. Firstly a 2.25 million pounds fund to support | :08:47. | :08:52. | |
trusts by monitoring and tr`ining equipment to improve safety. 90 | :08:53. | :08:53. | |
trusts have received a shard of the trusts have received a shard of the | :08:54. | :08:59. | |
fund enabling them to buy things such as faecal monitoring epuipment | :09:00. | :09:02. | |
-- faecal monitoring equipmdnt We are also investing in rolling out | :09:03. | :09:15. | |
training programmes to support midwives, obstetricians and | :09:16. | :09:17. | |
maternity teams to develop the skills and confidence they need | :09:18. | :09:20. | |
together to deliver world ldading together to deliver world ldading | :09:21. | :09:24. | |
safe care. We hope to be able to say more about how maternity services | :09:25. | :09:28. | |
can apply for this funding soon We are also providing some funding via | :09:29. | :09:33. | |
the health care quality improvement partnership in developing a new | :09:34. | :09:37. | |
system called this standardhsed perinatal mortality review tool | :09:38. | :09:41. | |
which once complete should be used consistently across the NHS in Great | :09:42. | :09:48. | |
Britain to enable maternity systems to review and learn from evdry | :09:49. | :09:52. | |
stillbirth in the UK. This was an important part of the vision for the | :09:53. | :09:54. | |
future and we share this developing future and we share this developing | :09:55. | :09:59. | |
a proper learning and understanding from what goes wrong, it nedds to be | :10:00. | :10:05. | |
developed and then the lessons spread across maternity services | :10:06. | :10:09. | |
across the country. Many reports have highlighted, as the honourable | :10:10. | :10:15. | |
intervention emphasised, thd fact intervention emphasised, thd fact | :10:16. | :10:18. | |
that we do not effectively learn from our mistakes. Indeed the Royal | :10:19. | :10:24. | |
College of obstetricians and gynaecologists guidelines state that | :10:25. | :10:27. | |
all stillbirth should be reviewed in a multi-professional meeting using a | :10:28. | :10:31. | |
standardised approach to an`lysis for substandard care and future | :10:32. | :10:35. | |
prevention and this is something we would like to see taken up. We must | :10:36. | :10:41. | |
view individual failings as important and recognise the need for | :10:42. | :10:44. | |
accountability, but balance this with the need to establish standard | :10:45. | :10:49. | |
processes that can prevent `voidable mistakes from happening agahn. This | :10:50. | :10:54. | |
is a reason why in April, wd established a new independent health | :10:55. | :10:59. | |
care safety investigation Branch to carry out investigations and share | :11:00. | :11:05. | |
its findings. The branch will operate independently of government | :11:06. | :11:08. | |
and the health care system to support continuous improvemdnt by | :11:09. | :11:10. | |
using the very best investigative techniques from around the world, as | :11:11. | :11:15. | |
well as fostering learning from staff, patients and other | :11:16. | :11:19. | |
stakeholders. And important improvement in maternity care is | :11:20. | :11:25. | |
care that is more collaborative and responsive to the needs of women. | :11:26. | :11:29. | |
Several honourable members reference the investigations by the S`nds | :11:30. | :11:36. | |
chanting which has revealed that 45% of women who raise a concern whether | :11:37. | :11:40. | |
health confessional during pregnancy were not listened to and thdn went | :11:41. | :11:47. | |
acceptable. All women should receive acceptable. All women should receive | :11:48. | :11:54. | |
safe, personalised return to care -- maternity care which is responsible | :11:55. | :11:58. | |
for the individual choices. The honourable gentleman asked from the | :11:59. | :12:04. | |
front bench where we are in supporting those with mental health | :12:05. | :12:08. | |
conditions through pregnancx. I would draw to his attention the | :12:09. | :12:09. | |
announcement this January where the announcement this January where the | :12:10. | :12:16. | |
government set out an addithonal ?290 million making available in the | :12:17. | :12:22. | |
next five years to invest in perinatal mental health services, | :12:23. | :12:25. | |
this is funded from within the bombing of health's overall spending | :12:26. | :12:30. | |
review settlement. -- Department of Health. This will go a long way to | :12:31. | :12:35. | |
providing support for women who are pregnant, who need mental hdalth | :12:36. | :12:41. | |
counselling. Both before and after birth. Last November, we asked the | :12:42. | :12:50. | |
National patient campaign shgn up to safety, launched by governmdnt in | :12:51. | :12:55. | |
maternity services to develop plans maternity services to develop plans | :12:56. | :12:57. | |
to improve the safety and shared best practice and in March this year | :12:58. | :13:04. | |
we launched a spotlight on laternity with guidance from maternitx | :13:05. | :13:07. | |
services to improve maternity outcomes. This set out five | :13:08. | :13:12. | |
high-level themes for services to focus on which are known to make | :13:13. | :13:16. | |
maternity care safer. Buildhng strong clinical leadership, building | :13:17. | :13:20. | |
capability and skills for all staff, sharing progress and lessons learned | :13:21. | :13:24. | |
across the system, improving data capture and knowledge, and hmproving | :13:25. | :13:27. | |
care for women with perinat`l mental health problems. In Februarx this | :13:28. | :13:33. | |
year, better births, the report of the International maternity review | :13:34. | :13:38. | |
chaired by Baroness Kumble was chaired by Baroness Kumble was | :13:39. | :13:41. | |
published, it was touched on today. It sets out the vision for laternity | :13:42. | :13:47. | |
services across Britain to become safer, more personalised, khnder, | :13:48. | :13:50. | |
more professional and familx friendly. The Department of Health | :13:51. | :13:57. | |
is leading the promotion of the work team of transformation programme | :13:58. | :13:59. | |
launched last July to delivdr the vision set out by the review and we | :14:00. | :14:04. | |
will be setting out our acthon plans shortly. As my honourable friend for | :14:05. | :14:09. | |
Eddisbury highlighted, it is vital that we support research into the | :14:10. | :14:13. | |
causes of stillbirth and neonatal deaths so we can better unddrstand | :14:14. | :14:19. | |
how to identify babies at rhsk with improved services. In recent years | :14:20. | :14:23. | |
the government has invested in research looking at important | :14:24. | :14:26. | |
questions on stillbirth and neonatal death. From 2012, the National is | :14:27. | :14:31. | |
chewed for health research logical research centres at Cambridge and | :14:32. | :14:36. | |
Imperial College have invested 6,000,005 years on research of | :14:37. | :14:41. | |
women's health, including rdsearch on stillbirth and neonatal death, | :14:42. | :14:47. | |
and we continue to encouragd new study that will identify babies at | :14:48. | :14:51. | |
risk. The evidence shows th`t this stretching ambition cannot be | :14:52. | :14:57. | |
achieved from improvements to NHS maternity services alone. The public | :14:58. | :15:02. | |
have got to be sure will be crucial. As the Lancet stillbirth series | :15:03. | :15:05. | |
concluded, some 90% of stillbirth of high income countries occur | :15:06. | :15:11. | |
antenatally and not during labour. We have heard for a number of | :15:12. | :15:14. | |
honourable members about thd need to do more to highlight risks during | :15:15. | :15:21. | |
pregnancy so that women are aware of things that they can do while | :15:22. | :15:26. | |
pregnant to minimise these risks. When starting pregnancy, not all | :15:27. | :15:30. | |
women will have the same risk of something going wrong, and women's | :15:31. | :15:34. | |
health before and during prdgnancy are some of the factors that | :15:35. | :15:37. | |
influence rates of stillbirth, near native dust and -- neonatal deaths | :15:38. | :15:47. | |
and others. Quarter of stillbirth are associated with smoking, and | :15:48. | :15:52. | |
alcohol consumption with associated with an estimated 40% incre`se to | :15:53. | :15:55. | |
stillbirth risk. In addition, a report published in June last year | :15:56. | :15:59. | |
showed that women living in poverty are 50% percent higher risk. Babies | :16:00. | :16:07. | |
from BME groups have a 50% higher risk, and teenage mothers and | :16:08. | :16:10. | |
mothers over 40 have a 39% higher risk. I know the minister is common | :16:11. | :16:18. | |
to the end of his speech, could he give me a guaranteed that hd will | :16:19. | :16:22. | |
look at the issue of registration of stillbirth because he had not | :16:23. | :16:27. | |
come back to the honourable come back to the honourable | :16:28. | :16:33. | |
gentleman's point as I conclude These are striking facts ard why the | :16:34. | :16:36. | |
Department of Health will continue to work closely with Public Health | :16:37. | :16:40. | |
England and voluntary sector organisations to help peopld have | :16:41. | :16:43. | |
healthy pregnancy and familhes have the best start in life. Any | :16:44. | :16:46. | |
information campaign will bd information campaign will bd | :16:47. | :16:49. | |
launched shortly and I in courage all honourable members to stpport it | :16:50. | :16:51. | |
during the launch period. I would like to say a few words before I | :16:52. | :16:57. | |
conclude about the importance of delivering good bereavement care for | :16:58. | :17:02. | |
those families who have expdrienced baby loss which was a topic raised | :17:03. | :17:07. | |
by many members today. Having not gone to this extent myself, I can | :17:08. | :17:11. | |
scarcely comprehend how dev`stating this must be for Paris to lose a | :17:12. | :17:17. | |
baby, and it is absolutely hmportant that parents received appropriate | :17:18. | :17:23. | |
care and support in a sensitive away as possible when this occurs. The | :17:24. | :17:29. | |
report that I have referencdd stated that 60% of parents currently | :17:30. | :17:32. | |
receive a high standard of bereavement care but that ldaves 40% | :17:33. | :17:39. | |
you do not which is not good enough. Since 2010, we have invested ?3 | :17:40. | :17:42. | |
million in the NHS to improve birthing environments and this is | :17:43. | :17:46. | |
included in better bereavemdnt suites and family rooms at some 40 | :17:47. | :17:51. | |
hospitals to support bereavdd families. I have seen some of these | :17:52. | :17:56. | |
myself, including the superb sweet opened last month at the Medway | :17:57. | :18:01. | |
Maritime Hospital which was one of those which they indicated they did | :18:02. | :18:07. | |
not have one when the honourable member for Eddisbury undertook | :18:08. | :18:13. | |
research. We have had from other members about the recent improvement | :18:14. | :18:17. | |
in Nottingham. We have been working with Sands, the miscarriage | :18:18. | :18:22. | |
Association and other trusts to understand the challenges that | :18:23. | :18:24. | |
maternity services face and highlight areas of good practice and | :18:25. | :18:28. | |
I am pleased that the all-p`rty group port published this wdek | :18:29. | :18:30. | |
recognises the work that we are supporting the development `nd | :18:31. | :18:34. | |
overarching bereavement card pathway to help reduce the variation in the | :18:35. | :18:39. | |
quality of bereavement care provided cost the NHS. | :18:40. | :18:44. | |
In response to my honourabld friend's intervention and the | :18:45. | :18:50. | |
comments in the debate, I h`ve been impressed by the comments m`de about | :18:51. | :18:56. | |
registration of post-24 week baby loss, often in the same place where | :18:57. | :19:01. | |
mothers with young babies are registering births and I can well | :19:02. | :19:05. | |
imagine that compounds the sense of grief. I think it is appropriate | :19:06. | :19:10. | |
that we look at best practice and the common-sense delivery of | :19:11. | :19:14. | |
registration to see if this can be spread more widely, so why will -- I | :19:15. | :19:21. | |
will ask officials to look `t that but I am not promising legislation. | :19:22. | :19:26. | |
In conclusion I would like to thank all honourable members for | :19:27. | :19:32. | |
participating in this debatd, for their deeply moving contribttions, | :19:33. | :19:36. | |
in particular to those who secured the debate and the work thex have | :19:37. | :19:40. | |
done in driving the all-party group and awareness across the nation I | :19:41. | :19:45. | |
think it is important that we try as the Government to drive improvement | :19:46. | :19:49. | |
in outcomes and I would likd to reassure honourable members that | :19:50. | :19:52. | |
this government is fully colmitted to reducing the number of b`bies who | :19:53. | :19:57. | |
died during pregnancy or in the neonatal period and supporthng those | :19:58. | :20:01. | |
families who are buried. Whhle baby loss awareness week in Westlinster | :20:02. | :20:06. | |
culminates with this import`nt debate today, other events `re | :20:07. | :20:10. | |
continuing to take place around the United Kingdom and internathonally. | :20:11. | :20:14. | |
I would like to courage everyone listening to this debate to joining | :20:15. | :20:17. | |
the global wave of light whhch we heard about earlier this afternoon, | :20:18. | :20:21. | |
by lighting a candle at sevdn o'clock this Saturday the 14th of | :20:22. | :20:25. | |
October, and letting it burned for one hour in remembrance of `ll the | :20:26. | :20:30. | |
babies who have died during pregnancy at, during or aftdr birth. | :20:31. | :20:40. | |
Thank you Madam Deputy Speaker. I want to pay huge tribute to my | :20:41. | :20:44. | |
colleagues and particularly the member for Lewisham and Deptford. I | :20:45. | :20:47. | |
know it is incredibly hard when you sit in this place to decide whether | :20:48. | :20:53. | |
you want to put something that is a deeply personal piece of yotr life | :20:54. | :20:57. | |
into the public domain and `ctually, any parent that is dealing with | :20:58. | :21:01. | |
child loss deals with that same dilemma. Do they talk to thdir | :21:02. | :21:05. | |
employer, do they talk to their friends, do they explain wh`t has | :21:06. | :21:10. | |
happened? And I therefore w`nt to thank you and all my other | :21:11. | :21:17. | |
colleagues, the member for @yrshire and Arran, the member for B`nbury, | :21:18. | :21:21. | |
the member for Washington and Sunderland West, the member for us | :21:22. | :21:25. | |
go cover them mother for Gower and indeed the member for Colchdster | :21:26. | :21:31. | |
who, we were not aware when this path was going to take us a year | :21:32. | :21:37. | |
ago, and I am so grateful that we are breaking the silence around | :21:38. | :21:45. | |
child loss. We need professhonals in the NHS to break the silencd around | :21:46. | :21:50. | |
baby loss and I certainly whll be joining the wave of light on | :21:51. | :21:55. | |
Saturday. There is a series of awards called the Butterfly Or wards | :21:56. | :22:01. | |
where you can nominate good practice in your local hospital. -- butterfly | :22:02. | :22:08. | |
or wards. I would think abott nominating those people who you know | :22:09. | :22:13. | |
and next year I will be there listening to the awards and I will | :22:14. | :22:17. | |
certainly be lighting a wavd of light, and I know many others will | :22:18. | :22:20. | |
as well. Thank you. Before I put the | :22:21. | :22:28. | |
question, I would like to commend everyone who has taken part in this | :22:29. | :22:36. | |
extraordinary debate this afternoon, many of whom have shown incredible | :22:37. | :22:42. | |
courage talking about sensitive personal issues. Those who criticise | :22:43. | :22:46. | |
this chamber and the way it works should pay a bit of attention to how | :22:47. | :22:55. | |
powerful it is when it oper`tes as a unique forum for national ddbate and | :22:56. | :23:03. | |
how effective it is when it operates at its best as it has done this | :23:04. | :23:12. | |
afternoon. The question is that this House has considered baby loss. As | :23:13. | :23:18. | |
many as are of the opinion, say "aye". To the contrary, "no". Nobody | :23:19. | :23:30. | |
is going to say No. Order. We now come to the backbench motion on | :23:31. | :23:39. | |
hormone pregnancy tests. Thank you, Madam Deputy Spe`ker | :23:40. | :23:46. | |
Firstly, I want to thank thd Backbench Business Committed for | :23:47. | :23:52. | |
granting this debate. This hs a second debate on an issue which I | :23:53. | :23:56. | |
started to campaign about fhve years ago. Just under two years ago, I | :23:57. | :24:05. | |
went to the backbench busindss debate committee, and asked for a | :24:06. | :24:11. | |
debate on the issue of a drtg which was proscribed to pregnant women in | :24:12. | :24:23. | |
the 60s and 70s. This drug has 0 times the strength of an or`l | :24:24. | :24:25. | |
contraceptive which is proscribed now. And we know what that was | :24:26. | :24:33. | |
derived for. It is estimated that at least 1.5 million women may have | :24:34. | :24:39. | |
taken this drug and thousands of families suffered. In a written | :24:40. | :24:45. | |
parliamentary question prevhously, the Minister assessed this figure of | :24:46. | :24:58. | |
540,000 women who may have suffered effects. This all-star tip hn 2 11 | :24:59. | :25:04. | |
when I met my constituents Nicola at home. She was born with congenital | :25:05. | :25:13. | |
deformities in her heart, stomach and womb. Her first operation was | :25:14. | :25:23. | |
when she was a week old. Another of my constituents was Bridget Oliver. | :25:24. | :25:31. | |
When I met Nicola at her hole, at the time I also saw boxes and boxes | :25:32. | :25:38. | |
of documents, some had been leaked from various pharmaceutical | :25:39. | :25:44. | |
countries and other bodies. I had a brief look through those documents. | :25:45. | :25:48. | |
It was at that point that I decided that this was an issue that needed | :25:49. | :26:01. | |
not just mentioning but we had to come to a real enquiry as to what | :26:02. | :26:07. | |
happened, because I am not exaggerating, and I am not being | :26:08. | :26:11. | |
overemotional, but applying my own legal knowledge to it, and ly | :26:12. | :26:18. | |
background as a barrister, H am prepared to say that as far as I am | :26:19. | :26:24. | |
concerned, there was a deliberate criminal negligent oversight by the | :26:25. | :26:28. | |
then committee on safety of medicines about this drug and its | :26:29. | :26:33. | |
usage, and the fact that it was continued to be proscribed for years | :26:34. | :26:37. | |
and years and years, despitd the medical community, most of them | :26:38. | :26:42. | |
knowing that it was causing adverse consequences to women who h`d taken | :26:43. | :26:53. | |
this. At the first debate, the end of it, the minister agreed to hold | :26:54. | :27:00. | |
an expert panel of enquiry to look into this particular thing, and it | :27:01. | :27:03. | |
was agreed by the minister hn parliament and outside Parlhament | :27:04. | :27:15. | |
that they would look at all the available documents. Documents that | :27:16. | :27:22. | |
we have an documents in the archives, and the Minister went | :27:23. | :27:25. | |
further to order that all the documents that the current | :27:26. | :27:34. | |
equivalent body hold, the MHRA would also be revealed as well. And the | :27:35. | :27:38. | |
enquiry would look at all of these documents, and to assess, to assess | :27:39. | :27:51. | |
what happened. This debate hs more about what has been going on with | :27:52. | :27:58. | |
this enquiry and the way it has been progressing. Frankly, to have | :27:59. | :28:06. | |
enquiry which has then becole a complete whitewash is a waste of | :28:07. | :28:11. | |
everyone's's time and money and it is pointless in having that enquiry. | :28:12. | :28:20. | |
May I first congratulate thd honourable lady in getting this | :28:21. | :28:23. | |
incredibly important debate and agree with what she is saying. At | :28:24. | :28:27. | |
the heart of the matter is ` regulator who took eight ye`rs to | :28:28. | :28:34. | |
act between 1967 and 1975 and then is investigating many years later | :28:35. | :28:39. | |
what it has done, it is absolutely crucial that that enquiry is seen to | :28:40. | :28:45. | |
be independent and full. I thank my honourable friend for that `nd I | :28:46. | :28:49. | |
will come onto the issue about the independence of the enquiry and the | :28:50. | :28:56. | |
members who are composed of that particular panel. The minister | :28:57. | :29:09. | |
indicated it would be an independent panel of experts and they would look | :29:10. | :29:13. | |
at what happened and obviously there were issues about lessons to be | :29:14. | :29:17. | |
learned. Our concern is soldly about what happened, who did what and what | :29:18. | :29:25. | |
will ultimately be compensation for the victims and apologies for the | :29:26. | :29:35. | |
victims as well. I want to highlight briefly some of the evidencd that we | :29:36. | :29:42. | |
have uncovered which shows what has that Chile happened and what happens | :29:43. | :29:48. | |
in the 60s and 70s -- which shows what actually happened. Would my | :29:49. | :29:56. | |
honourable friend give way? Yes of course. My honourable friend will be | :29:57. | :30:04. | |
aware that between 1970 and 197 , Finland, Sweden and Norway `ll | :30:05. | :30:10. | |
banned the use of these sorts of treatments. Does she think there was | :30:11. | :30:16. | |
plenty of indication at that time to give people reason to believe that | :30:17. | :30:20. | |
there was a real problem to be addressed and isn't it timely now, | :30:21. | :30:25. | |
and I congratulate her, that we are now starting to get the evidence out | :30:26. | :30:31. | |
and have it discussed. Absolutely right. It is amazing how other | :30:32. | :30:37. | |
countries reacted to the evhdence. The medical Association herd was | :30:38. | :30:45. | |
firstly alerted by a doctor in 967, a paediatrician who said th`t her | :30:46. | :30:50. | |
research found there was a link between people who had taken the | :30:51. | :30:59. | |
drug and deformities in babhes. Her letters and research was dismissed | :31:00. | :31:05. | |
out of hand by Doctor Inman who headed the regulatory authority and | :31:06. | :31:08. | |
in fact, in a letter, they referred to her as a pathetic eastern | :31:09. | :31:16. | |
European Doctor woman, the derogatory way they referred to her, | :31:17. | :31:20. | |
completely ignoring what shd had to say. We know that there was other | :31:21. | :31:27. | |
information that was available. For example, a committee in February | :31:28. | :31:31. | |
1969 received a letter from a Doctor deed of the Royal College of General | :31:32. | :31:40. | |
Practitioners, who stated, 0969 that Primodos should be withdrawn from | :31:41. | :31:44. | |
use. However, the chief scidntist for that committee, Doctor Hnman, | :31:45. | :31:49. | |
refused to support this, and instead wrote to the manufacturer of the | :31:50. | :31:55. | |
drugs sharing to stay. The opinion that Primodos should be withdrawn | :31:56. | :32:05. | |
should not be taken into account. That winning took this to rhd | :32:06. | :32:11. | |
themselves of an unwanted pregnancy. We know that Norway and Sweden in | :32:12. | :32:17. | |
1970 band this drug. Again, the committee on safety of medicine took | :32:18. | :32:24. | |
no action. Similar notices were also issued in Finland, Germany, the USA, | :32:25. | :32:28. | |
Australia, Ireland and the Netherlands, but again the committee | :32:29. | :32:35. | |
took no action. In fact, in 197 , a letter from Schering, letter said | :32:36. | :32:45. | |
after a discussion with the committee on safety of medicines, we | :32:46. | :32:52. | |
agreed not to recommend for use of pregnancy diagnosis. It is not | :32:53. | :32:58. | |
recommended for early pregn`ncy because problems with the fdmale | :32:59. | :33:02. | |
foetus cannot be excluded whth certainty. Still the committee | :33:03. | :33:07. | |
issued no warning. There were further issues that stated the side | :33:08. | :33:10. | |
effects cannot be reliably dxcluded and that Primodos should no longer | :33:11. | :33:16. | |
be recommended for diagnosis of pregnancy. Again, nothing. | :33:17. | :33:28. | |
And to be assured the committee the panel, has sight of those documents, | :33:29. | :33:39. | |
that they have sufficient thme to read those documents. That they are | :33:40. | :33:41. | |
properly looked at, and not ignored. Or not looked at properly. Hn 1 75, | :33:42. | :33:49. | |
the committee on safety of ledicines issued its first warning, stating | :33:50. | :33:52. | |
that a number of studies have shown a possible association betwden the | :33:53. | :34:03. | |
hormone pregnancy test and hncreased incidence of congenital | :34:04. | :34:08. | |
abnormalities. On 15 October 19 5, 41 years ago, the committee said, we | :34:09. | :34:15. | |
are defenceless in this matter of the eight year delay. It was in | :34:16. | :34:25. | |
November 1977, eight years `fter the committee had first been aldrted, | :34:26. | :34:34. | |
that an adverse reaction if it was issued to the medical profession, | :34:35. | :34:36. | |
stating, further results have now been published and the association | :34:37. | :34:38. | |
is confirmed. Madam Deputy Speaker, I want to refer to, very brhefly, | :34:39. | :34:44. | |
some of the documents. But hn the archives, and documents loc`ted from | :34:45. | :34:53. | |
burning in Germany to Kew G`rdens, which Murray Lion, the lady | :34:54. | :35:00. | |
representing the chair of the victims Association, has bedn | :35:01. | :35:03. | |
painfully gathering the doctments. -- Mary Lion. The committee has been | :35:04. | :35:11. | |
informed of them. At this point I want to pay a particular trhbute to | :35:12. | :35:21. | |
Marie Lion, she has been dohng a considerable amount of work over the | :35:22. | :35:24. | |
last five years. The days, the months, the months she has been | :35:25. | :35:28. | |
dealing with this, she has travelled the length and breadth of the United | :35:29. | :35:31. | |
Kingdom and gone to Germany to look at these documents, get these | :35:32. | :35:36. | |
documents. She has been, effectively, working on her own In | :35:37. | :35:43. | |
that she has no support on `ny government or local authority, a | :35:44. | :35:50. | |
body or anything. The victil association has been very mtch on | :35:51. | :35:53. | |
their own. The only people who have been supporting them have bden the | :35:54. | :35:57. | |
members of the all parliamentary group and the MPs in this chamber. | :35:58. | :36:01. | |
He's been fighting for their cause. A special thanks to her. And also | :36:02. | :36:08. | |
thanks to Jason Farrell of Sky News who actually has been quite | :36:09. | :36:11. | |
instrumental in getting somd of the stuff from Berlin as well as having | :36:12. | :36:18. | |
the documents translated. That's another issue we need to cole onto. | :36:19. | :36:22. | |
A number of the documents that come from Germany are, in fact, hn | :36:23. | :36:29. | |
German, as you'd expect. Ond of the things we would like, and I would | :36:30. | :36:33. | |
like an answer to, is the p`nel is the inquiry, going to get all of | :36:34. | :36:37. | |
those documents translated hnto English? Because clearly yot can't | :36:38. | :36:45. | |
carry out an enquiry if the documents are in a different | :36:46. | :36:47. | |
language. That is another qtestion we need an answer to. And wd need to | :36:48. | :36:54. | |
know the answer about, have all the documents the victims Assochation | :36:55. | :36:57. | |
have been presented with behng looked at and presented to the | :36:58. | :37:00. | |
panel, and the format in whhch they are presented. I can remembdr as a | :37:01. | :37:06. | |
lawyer, when I had a large case with thousands of pages, there w`s a way | :37:07. | :37:09. | |
we presented the evidence to the jury so they could understand it. | :37:10. | :37:16. | |
What I'd like to know is, the panel of the inquiry, are they dohng that? | :37:17. | :37:24. | |
If not, why not? The reason we are asking these questions is bdcause | :37:25. | :37:27. | |
I've tried to contact the chair of the panel, Doctor Elisa Gibb, and | :37:28. | :37:30. | |
have written letters to her, asking her to answer numerous questions. | :37:31. | :37:36. | |
And to be honest, we have not received a satisfactory answer to | :37:37. | :37:43. | |
any of these things. If anything, Marie Lyon, who has observer status | :37:44. | :37:48. | |
in this panel, has been put under what I would call a gagging clause, | :37:49. | :37:56. | |
which is that she can't talk about anything because if she did she | :37:57. | :37:58. | |
would be criminally prosecuted for this. One of the things I rdmember | :37:59. | :38:02. | |
when we had a discussion with the Minister, the purpose of thhs | :38:03. | :38:04. | |
inquiry was to have transparency, openness. Whilst we accept there is | :38:05. | :38:16. | |
a need for a degree of confidentiality, where the dvidence | :38:17. | :38:18. | |
is being presented, we need to know what is going on. We need | :38:19. | :38:20. | |
transparency because without transparency what is the purpose of | :38:21. | :38:24. | |
it? The other thing the minhster promised is that this inquiry would | :38:25. | :38:29. | |
have the victims at the heart of it. At the heart of it. And yet, how are | :38:30. | :38:38. | |
the victims treated in this inquiry? Which has started and which has been | :38:39. | :38:42. | |
going for over a year now? H got a letter from one of the victhms who | :38:43. | :38:46. | |
turned up. And she said, and I will read this, because so distrdssing, | :38:47. | :38:54. | |
they were told they would come in and they could speak for a few | :38:55. | :38:58. | |
minutes. Some of them travelled five, six hours across the country, | :38:59. | :39:04. | |
to get to the hearing. They were promised at least 15 minute slots, | :39:05. | :39:08. | |
what they were given sometiles was three minutes. Five minutes. Nobody | :39:09. | :39:14. | |
even spoke to them properly. They were just asked to get on whth it | :39:15. | :39:20. | |
and say what they have to s`y. The victims, of course, those who gave | :39:21. | :39:24. | |
evidence, were not subject to, fortunately, these gagging clauses | :39:25. | :39:27. | |
so we were able to find out a little bit about what happened on that one | :39:28. | :39:31. | |
day, which seems to have bedn allocated for the victims. We heard | :39:32. | :39:37. | |
from a few of them. The pandl, they didn't ask them any questions, they | :39:38. | :39:40. | |
were cross-examined, they wdren t asked anything, they just h`d three | :39:41. | :39:45. | |
minutes. One lady in partictlar said she was devastated, five hotrs she | :39:46. | :39:50. | |
had taken to drive, to get there. She was given three minutes. They | :39:51. | :39:54. | |
said they were sitting so f`r away from the panel with microphones .. | :39:55. | :39:58. | |
They weren't sure whether the panel were hearing what they have to say. | :39:59. | :40:03. | |
So how can an inquiry which has victims at the heart of it | :40:04. | :40:09. | |
actually... Doesn't give thdm even more than a day to listen to them? | :40:10. | :40:12. | |
When they turn up, give thel three minutes. That is why we are having | :40:13. | :40:17. | |
this debate. Because we are concerned. The members of | :40:18. | :40:20. | |
Parliament, who are supporthng and assisting the victims, is that the | :40:21. | :40:29. | |
way the inquiry is going, I don t think any of us have any confidence | :40:30. | :40:34. | |
in it. Victims, like has bedn shown in the Hillsborough inquiry, the | :40:35. | :40:38. | |
sexual abuse inquiry, it's `ll about the victims. It's not about | :40:39. | :40:43. | |
protecting regulatory bodies, it's not about protecting the schentific | :40:44. | :40:47. | |
community, it is about people been affected by this. The other thing | :40:48. | :40:55. | |
the minister said, it goes without saying, any inquiry has to be | :40:56. | :40:58. | |
independent. The panel membdrs must be independent. So when I r`ised | :40:59. | :41:04. | |
this question with Doctor Elisa Gibb, the chair of it, in a letter, | :41:05. | :41:10. | |
she said, well, we got the dxpert panels to declare they had nothing | :41:11. | :41:17. | |
to declare. No independent vetting or investigation about the | :41:18. | :41:19. | |
background of any of these people. We have to understand this, people | :41:20. | :41:24. | |
in the medical community is, you know, and the scientists, and the | :41:25. | :41:29. | |
pharmaceutical companies, often work with each other. People havd been | :41:30. | :41:35. | |
advisers, consultant to somdbody. Have gone from the pharmacettical | :41:36. | :41:36. | |
companies into medicine, into hospitals. It's a community of | :41:37. | :41:42. | |
people who are linked. We don't have the resources, some research has | :41:43. | :41:49. | |
shown at least two of the p`nel members turned out, one of them | :41:50. | :41:51. | |
Laura Yates, has put on her social media profile that she doesn't think | :41:52. | :41:57. | |
Primodos caused any defects so how can this person be part of ` panel? | :41:58. | :42:01. | |
Then we got the information about Doctor Schafer, the man who has | :42:02. | :42:07. | |
worked with the company concerned. So he has direct links to the | :42:08. | :42:12. | |
hearing and he's still on this panel. It's only two people. What we | :42:13. | :42:19. | |
want to know is, from the Mhnister, are they going to carry out proper | :42:20. | :42:27. | |
vetting of the panel members to see whether they really are inddpendent, | :42:28. | :42:28. | |
and about their connections? Again, without that we don't have | :42:29. | :42:46. | |
any faith in this inquiry. The other thing we've asked from the hnquiry | :42:47. | :42:49. | |
is how long they are going to go on for, how many sessions are they | :42:50. | :42:51. | |
going to have? No response, no nothing. So we have, for well over a | :42:52. | :42:54. | |
year, a nobody, nobody knows what on earth is going on with this inquiry. | :42:55. | :42:57. | |
Again, one of the other questions for the Minister, can we be told how | :42:58. | :43:07. | |
long it's going to carry on for How many days have been set aside for | :43:08. | :43:10. | |
it? Can we find out how manx hours to date have been spent on this | :43:11. | :43:13. | |
inquiry? And, of course, how have the experts been chosen? We don t | :43:14. | :43:23. | |
even know that. What methodology. There are 15 odd people on the | :43:24. | :43:25. | |
panel, do you need that manx people? Who are they? How relevant `re they | :43:26. | :43:34. | |
to the point we're looking `t? The honourable lady will soon bd drawing | :43:35. | :43:36. | |
her remarks to a close in the knowledge there are many other | :43:37. | :43:38. | |
people who wish to speak thhs afternoon and she has vastlx | :43:39. | :43:40. | |
exceeded the guideline amount of time. I will allow her. Mad`m | :43:41. | :43:44. | |
Speaker I was literally comhng to the end. The end comment was really | :43:45. | :43:54. | |
to say, we're very grateful that this enquiry was set up, but we have | :43:55. | :44:00. | |
real genuine concerns about what happened with it, where it's going. | :44:01. | :44:01. | |
At the end of the day, people already said earlier, | :44:02. | :44:19. | |
there is no point having an inquiry if it doesn't really look at things | :44:20. | :44:22. | |
that matter. One of the things has to be the regulatory failurds and | :44:23. | :44:24. | |
the cover-ups in the 60s and 70s. And an explanation for that. The | :44:25. | :44:27. | |
question is as on the order paper... I would like to congratulatd my | :44:28. | :44:31. | |
honourable friend from Bolton South East. I'm pleased to be calling this | :44:32. | :44:40. | |
debate not least to pay tribute to my wonderful constituent Marie Lyon | :44:41. | :44:42. | |
who has already been mentioned by my honourable friend. She's absolutely | :44:43. | :44:43. | |
worked pursuing the Justice for the families | :44:44. | :44:57. | |
affected by hormone pregnancy test drugs. It is her persistencd in a | :44:58. | :45:00. | |
large part that has led to this inquiry and she sits as an observer | :45:01. | :45:02. | |
representing the Association of children damaged by this. However, | :45:03. | :45:07. | |
she is bound by confidentiality I know she's swamped by a deltge of | :45:08. | :45:10. | |
paper. 36 large files in thd last two weeks alone. | :45:11. | :45:22. | |
She has two weeks to read and research them. That's 3000 pages, | :45:23. | :45:25. | |
over 3000 pages of densely written and complex information, as we've | :45:26. | :45:27. | |
heard, often in a foreign l`nguage. If I were a cynic I might stspect | :45:28. | :45:30. | |
they were trying to deter hdr from continuing but it's obvious they | :45:31. | :45:38. | |
don't know Marie. If all thd group members have been given the same | :45:39. | :45:40. | |
timescale I wonder if anyond is able to assimilate this amount of | :45:41. | :45:42. | |
information, however much stpport they have. Now, Marie herself has a | :45:43. | :45:49. | |
daughter who was born with her left arm missing below the elbow joint. | :45:50. | :45:52. | |
She took Primodos on the advice of her doctor. His words were, we've | :45:53. | :45:58. | |
got this great new pill to find out if you're pregnant. We've no longer | :45:59. | :46:02. | |
got to kill the rabbit. She was excited, eager to find out, of | :46:03. | :46:07. | |
course she took her doctor's advice. Like a number of women in mx | :46:08. | :46:11. | |
constituency. I have the highest concentration of constituents | :46:12. | :46:14. | |
affected by thalidomide, I've got the highest concentration of | :46:15. | :46:16. | |
families affected by Primodos. There is a cluster in certahn | :46:17. | :46:30. | |
practices. For me as a laypdrson this demonstrates beyond dotbt the | :46:31. | :46:33. | |
link between the drug and the birth defects. I question the | :46:34. | :46:34. | |
reasonableness of placing the burden of proof on those affected. Surely | :46:35. | :46:37. | |
the key test should be, to prove, that these tablets were safd to take | :46:38. | :46:42. | |
and there were no counter indications. And when there were | :46:43. | :46:51. | |
apparent counter indications, was it withdrawn speedily and in thme to | :46:52. | :46:53. | |
stop any further birth defects? These women, and I will mention some | :46:54. | :46:57. | |
of their stories later, thex were all advised to take this drtg by | :46:58. | :47:01. | |
their GP. They took it to fhnd out if they were pregnant, not for any | :47:02. | :47:05. | |
other reason, as has been shamefully suggested. They are still lhving | :47:06. | :47:06. | |
with the consequences. Wendy's Sun has badly deforled feet. | :47:07. | :47:19. | |
June's Sun has congenital hdart problems. Elsie's door to sdvere | :47:20. | :47:21. | |
learning difficulties and epilepsy. Anita's Sun died five minutds before | :47:22. | :47:28. | |
he was born and had a large lump on the back of his neck. Tom lhves with | :47:29. | :47:31. | |
a club foot and many serious health problems. Mike has severe problems | :47:32. | :47:37. | |
swallowing and eating. They are all different defects, but of course | :47:38. | :47:43. | |
people found out they were pregnant or thought they were pregnant, at | :47:44. | :47:45. | |
different times and took thd pill at different times through the | :47:46. | :47:53. | |
gestation period. Of course the problems will be different. These | :47:54. | :47:56. | |
are all personal tragedies. But the story that remained with me the | :47:57. | :47:58. | |
longest is about a constitudnt who didn't want to be named. Thdy came | :47:59. | :48:03. | |
in with her husband. They h`d looked forward to having a large f`mily, | :48:04. | :48:07. | |
she actually said to me, I've got a lot of love to share here. @nd she | :48:08. | :48:11. | |
was excited about her first pregnancy, which was confirled after | :48:12. | :48:17. | |
she took Primodos. Her son was born with learning difficulties `nd | :48:18. | :48:19. | |
feeding problems. When they asked the doctor what the reason for this | :48:20. | :48:24. | |
was, he said it could be hereditary, passed down from her husband. In | :48:25. | :48:30. | |
fact, he said to her husband, these were the words, it could be your | :48:31. | :48:33. | |
fault. They then decided not to have any more children because of that | :48:34. | :48:41. | |
risk. So this drug not only affected their child, it cheated thel out of | :48:42. | :48:44. | |
the other children that thex so desperately wanted. | :48:45. | :48:51. | |
My constituent's husband didd this year, worn out from the str`in of | :48:52. | :48:57. | |
looking after his son and thinking that this could have been hhs fault. | :48:58. | :49:01. | |
It is for these families th`t justice needs to be done and it | :49:02. | :49:05. | |
needs to be seen to be done. I fully support the motion today. Mdmbers of | :49:06. | :49:09. | |
the association had done stdrling work in bringing this issue forward | :49:10. | :49:13. | |
and they have done great thhngs with little money and support. It is now | :49:14. | :49:17. | |
up to us to make sure that their voices heard loud and clear and that | :49:18. | :49:21. | |
the expert working group dods operate without bias and without | :49:22. | :49:25. | |
undue influence. Only through lifting the veil of secrecy can we | :49:26. | :49:30. | |
be sure of this. Only then can there be full confidence and conclusion. | :49:31. | :49:35. | |
We cannot give these familids back what they have lost, but we can at | :49:36. | :49:42. | |
least give them that. Thank you, Madam Deputy Spe`ker I | :49:43. | :49:46. | |
rise to speak on half of my constituent, Mrs Wilma Ord, her | :49:47. | :49:51. | |
thousands of women who have been thousands of women who have been | :49:52. | :49:57. | |
affected by the drug Primodos. Madam Deputy Speaker, it is very sad that | :49:58. | :50:06. | |
this debate follows an important debate on baby loss. Madam Deputy | :50:07. | :50:11. | |
Speaker, miscarriages, cerebral palsy, brain damage and children | :50:12. | :50:15. | |
being born without limbs, these are just some of the alleged | :50:16. | :50:19. | |
side-effects that the drug Primodos can inflict. Dubbed the forgotten | :50:20. | :50:25. | |
thalidomide, Primodos was a drug given to women in the 50s, 60s and | :50:26. | :50:31. | |
70s to establish pregnancy which many believe has caused deformities | :50:32. | :50:34. | |
in thousands of babies in the UK and across the world. Primodos was | :50:35. | :50:40. | |
proscribed as 40 times stronger than the average oral contracepthve pill. | :50:41. | :50:49. | |
In 1966, tests undertaken bx Schering now known as Bayer found | :50:50. | :50:54. | |
Primodos was potentially embryo lethal and embryo toxic. Thd | :50:55. | :51:02. | |
medicines health care regul`tory agency which I will refer to as MHRA | :51:03. | :51:06. | |
says that regulatory environments have changed since the 1970s and as | :51:07. | :51:11. | |
a result no medicines are recommended for use during pregnancy | :51:12. | :51:15. | |
unless considered essential. I would ask the Minister to keep thhs in | :51:16. | :51:23. | |
mind during the debate. An dnquiry was set at last year to est`blish | :51:24. | :51:28. | |
whether there was a link between Primodos and birth defects. Before I | :51:29. | :51:32. | |
touch on the detail of the dnquiry want to acknowledge and pay tribute | :51:33. | :51:38. | |
to my constituent Mrs Wilmot Ord and her daughter who are here in the | :51:39. | :51:41. | |
gallery today along with many other families whose lives have bden | :51:42. | :51:44. | |
affected by this issue and have made long journeys around the cotntry at | :51:45. | :51:53. | |
personal expense. I will spdak more on her story later in my | :51:54. | :51:57. | |
contributions. We have menthoned already merry lion and she has done | :51:58. | :52:03. | |
a power of work and she is ` woman who I have to say is an inspiration | :52:04. | :52:07. | |
to my staff and I on a dailx basis. I would also like to pay trhbute to | :52:08. | :52:12. | |
my friend and colleague Yaslin Qureshi. Sometimes we must put our | :52:13. | :52:16. | |
party politics aside for thd greater good. Today is one of those days | :52:17. | :52:21. | |
when politicians of all colours stand together in unity to fight for | :52:22. | :52:25. | |
justice, for those who are being silenced or cannot speak for | :52:26. | :52:30. | |
themselves. Turning now to the scope of the enquiry. In October 2014 the | :52:31. | :52:37. | |
former Minister for life schences, George Freeman MP, ordered `n | :52:38. | :52:41. | |
independent review on all evidence of papers linking oral medicines to | :52:42. | :52:49. | |
birth defects. Following thd recent developments of the progress on this | :52:50. | :52:53. | |
enquiry, I have grave concerns about the scope and the way this hs being | :52:54. | :52:59. | |
conducted. In summary, thesd concerns are conflicts of interest | :53:00. | :53:02. | |
including lack of clarity on framework on the scope of work and | :53:03. | :53:07. | |
decision makers, the evidence being presented to the group, the lack of | :53:08. | :53:11. | |
focus on regulatory failures and finally transparency and opdnness. | :53:12. | :53:18. | |
On conflicts of interest, mx concerns are severe yet simple. | :53:19. | :53:22. | |
Panel members have been askdd to self declare their interests. We | :53:23. | :53:27. | |
know of one instance that an undeclared interest went unnoticed | :53:28. | :53:30. | |
until highlighted to the individual which suggests there are no proper | :53:31. | :53:33. | |
checks in place to ensure declarations are made. Therd is no | :53:34. | :53:41. | |
clarity on how or whether stch conflicts are declared or | :53:42. | :53:43. | |
investigated or whether thex are conflicts or not. There is ` lack of | :53:44. | :53:47. | |
clarity on who is responsible for this, if anyone, and it was thought | :53:48. | :53:51. | |
appropriate for a panel member to be invited as a visiting expert and | :53:52. | :54:00. | |
then led to be decided to rdmove him from the working group due to | :54:01. | :54:02. | |
previous associations with the drug manufacturer. I have concerns about | :54:03. | :54:06. | |
the logic to first invite hhm as an expert and then to remove hhm as the | :54:07. | :54:09. | |
conflict. Who is making these decisions and why are they being | :54:10. | :54:14. | |
made? I and other members h`ve been told in a letter from the chair of | :54:15. | :54:17. | |
the expert working group no core members of the expert working group | :54:18. | :54:23. | |
has declared interest in Baxer so my question is what is a core lember | :54:24. | :54:27. | |
and how has that information been verified and is it acceptable for | :54:28. | :54:32. | |
non-core members to be associated with Bayer? The letter further | :54:33. | :54:41. | |
states that all recommendathons about who ought to sit on the | :54:42. | :54:45. | |
working group were considerdd and where appropriate endorsed by the | :54:46. | :54:49. | |
chair, taking into consider`tion the expertise required from the expert | :54:50. | :54:52. | |
working group and following consultation with the executive My | :54:53. | :54:57. | |
question is, what expertise to the chair and said is required `nd is to | :54:58. | :55:04. | |
sit in conjunction with the MHRA and are they the best people to decide? | :55:05. | :55:11. | |
I know from a particularly odd experience of my own experidnce | :55:12. | :55:14. | |
concerning a completely sep`rate panel member and my honourable | :55:15. | :55:18. | |
friend mentioned this as well, we're unsure if there is a potenthal | :55:19. | :55:23. | |
conflict. Earlier this year, when we convened with Marie lion we came | :55:24. | :55:34. | |
across a website which purports to be funded by Public Health Dngland. | :55:35. | :55:39. | |
It was some concern that we read the article on the site on the `pparent | :55:40. | :55:45. | |
safety of Primodos. I quote one section which states although older | :55:46. | :55:52. | |
smaller studies considered ` link between oral pregnancy tests and | :55:53. | :55:57. | |
congenital malformation, subsequent larger controlled studies showed no | :55:58. | :56:03. | |
increase risk. Madam Deputy Speaker, that is doublespeak at its worst. I | :56:04. | :56:07. | |
telephoned the number on thd website to ask about the content and share | :56:08. | :56:11. | |
my concerns. The gentleman with whom I spoke assured me that the person | :56:12. | :56:16. | |
who wrote this and who he n`med during the call, had lots of | :56:17. | :56:20. | |
knowledge sitting on the expert working group. This information has | :56:21. | :56:23. | |
also been tweeted out again on numerous occasions. You may imagine | :56:24. | :56:27. | |
my dismay, not only on readhng information which suggests to the | :56:28. | :56:32. | |
public that the drug is safd, which as we lead remains uncertain at | :56:33. | :56:36. | |
best, only to learn that a lember of the working group was behind its | :56:37. | :56:40. | |
content. On the basis that the scope of the review is to examine the | :56:41. | :56:45. | |
evidence to assess whether there are grounds between accept in a link | :56:46. | :56:48. | |
between the use of hormone pregnancy tests and the conditions experienced | :56:49. | :56:53. | |
by some patience, I would ask the Minister to consider how independent | :56:54. | :56:56. | |
and impartial this expert working group truly is and if that hs not in | :56:57. | :57:03. | |
fact a clear conflict. It is this particular member I am describing as | :57:04. | :57:06. | |
a core member of the working group, who expects to make a decishon | :57:07. | :57:09. | |
whether there is a link between the hormone pregnancy tests and birth | :57:10. | :57:15. | |
defects in babies, because H would suggest her decision is alrdady | :57:16. | :57:17. | |
clear and that would appear to undermine the whole purpose of the | :57:18. | :57:22. | |
working group's formation. Given the obvious conflict of interest, I | :57:23. | :57:24. | |
wrote to the chair of the enquiry panel who I thought had a dtty to | :57:25. | :57:28. | |
check on such conflicts. From confirmation that this parthcular | :57:29. | :57:31. | |
group member declared an interest, I also asked if it was to close and | :57:32. | :57:36. | |
what measures were taken to decide no conflict existed. If it was not | :57:37. | :57:42. | |
declared by the apparel member I suggested it be investigated but | :57:43. | :57:46. | |
whether it was investigated to be a conflict. I was looking for | :57:47. | :57:49. | |
assurance that checks and b`lances were in place, given that one member | :57:50. | :57:54. | |
had already been asked to ldave the panel following and unveiled | :57:55. | :57:58. | |
conflict. However, I wrote `nd sent my letter at the end of Augtst and I | :57:59. | :58:04. | |
am yet to receive a responsd. Given the gravity of my concerns `nd of | :58:05. | :58:11. | |
this issue, I'd get a sense that something is amiss with the enquiry | :58:12. | :58:17. | |
and it smacks of a signific`nt cover-up on a significant scale I | :58:18. | :58:23. | |
do not use these words lightly. My final question is this, how can we | :58:24. | :58:27. | |
have confidence in the workhng group and have they been carefullx secured | :58:28. | :58:33. | |
to ensure a balance of expertise while maintaining impartialhty? The | :58:34. | :58:39. | |
letter sought to reassure mdmbers raised more questions than ht | :58:40. | :58:44. | |
answered. We were told and H quote: members invited experts and | :58:45. | :58:47. | |
observers recently given access to all of the documents that MHRA had | :58:48. | :58:52. | |
used in preparing the assessments. These are documents which h`ve been | :58:53. | :58:58. | |
used as a basis for the first four meetings including the 11th of | :58:59. | :59:01. | |
August. In case anyone missdd that, I will say that again. That the | :59:02. | :59:06. | |
documents may have been givdn to the expert working panel, have been used | :59:07. | :59:11. | |
by the MHRA to prepare assessments. What exactly does that mean because | :59:12. | :59:16. | |
it strikes the MHRA cherry picking what the panel members get dizzy and | :59:17. | :59:20. | |
that quite frankly is not acceptable. How can they make | :59:21. | :59:25. | |
decisions based on only being given the MHRA chosen information when | :59:26. | :59:30. | |
there is a vast amount of information available on Prhmodos | :59:31. | :59:38. | |
and how does this fit with George Freeman's evidence? I fully | :59:39. | :59:42. | |
appreciate I have delved into significant detail, something we | :59:43. | :59:45. | |
occasionally lack in this place but I hope the significance of this will | :59:46. | :59:51. | |
not be lost on the Minister when considering the numerous documents | :59:52. | :59:54. | |
found in the Germany and qudue archives, some of which I h`ve seen | :59:55. | :59:59. | |
myself. Furthermore, in Julx this year in Germany there were `rticles | :00:00. | :00:07. | |
published releasing damaging information about Primodos `nd | :00:08. | :00:17. | |
Bayer. The article discussed deliberate miss evidence. I have | :00:18. | :00:24. | |
concern about what evidence is provided to the working grotp. Let | :00:25. | :00:32. | |
me share the situation on mx constituent. Mrs Ord came to see me. | :00:33. | :00:38. | |
She was pregnant in 1970 and gave birth to a daughter who was born | :00:39. | :00:42. | |
with multiple defects including cerebral palsy, profound de`fness, | :00:43. | :00:47. | |
asthma and bone density isstes. Mrs Ord had taken Primodos to tdst | :00:48. | :00:51. | |
whether she was pregnant. Hdr medical records which she showed me | :00:52. | :00:58. | |
showed a gap between 1968 and 1 71. In other words, there is no evidence | :00:59. | :01:03. | |
of her ever being pregnant or proscribed Primodos by her GP. | :01:04. | :01:08. | |
Having tried desperately to track down her missing medical records, my | :01:09. | :01:11. | |
constituent received a lettdr from NHS Scotland and I quote: I referred | :01:12. | :01:16. | |
to missing notes from the pdriod 90s at the 9090 70. I have done a full | :01:17. | :01:20. | |
investigation and contacted all the previous GP practices you g`ve me | :01:21. | :01:25. | |
and checked our off-site storage but with no success. Unfortunatdly, we | :01:26. | :01:28. | |
have no way of knowing when or where these notes were lost or mislaid at | :01:29. | :01:34. | |
a practice. Evidence I have seen and whhch I do | :01:35. | :01:37. | |
not know whether the expert working group members have been provided | :01:38. | :01:41. | |
with new debugger showed th`t Schering new of adverse effdcts I | :01:42. | :01:49. | |
have also seen documents showing that Schering sought legal `dvice. I | :01:50. | :01:58. | |
have seen a document showing that Schering should and I quote by off a | :01:59. | :02:01. | |
family who were attempting to take legal action against them bdcause | :02:02. | :02:05. | |
there was no telling how men are more cases there would be. H have | :02:06. | :02:10. | |
seen a document dated the 30th of March 96 before clearly stating that | :02:11. | :02:14. | |
four GP doctors worried that adverse reactions, it would be best for them | :02:15. | :02:19. | |
to destroy any evidence or records to protect themselves and I quote, | :02:20. | :02:23. | |
however wrong that was. And I would ask the Minister to think again now | :02:24. | :02:28. | |
about whether Mrs Ord's missing medical records may have gone and | :02:29. | :02:39. | |
the adequacy of the relevant documents which are actuallx being | :02:40. | :02:41. | |
shared with the expert workhng group. I will give way. | :02:42. | :02:47. | |
As a scientist you will alw`ys make decisions based on evidence, and it | :02:48. | :02:53. | |
seems there is a lot of evidence missing, both documentary and in | :02:54. | :02:56. | |
terms of scientific research... Does she agree with me that one of the | :02:57. | :03:03. | |
big issues for many of the people affected is that they feel | :03:04. | :03:05. | |
responsible themselves. And for some of the people they haven't gone into | :03:06. | :03:12. | |
the work your constituent h`s. The burden they are carrying is really | :03:13. | :03:17. | |
quite severe at this point. I thank my honourable friend for th`t | :03:18. | :03:20. | |
intervention and I couldn't agree more, the fact there are many | :03:21. | :03:24. | |
families around the world, puite frankly, who do not have thd | :03:25. | :03:29. | |
answers, and have children who have been affected, and still don't know | :03:30. | :03:34. | |
many years later, is nothing short of a scandal. It's so important we | :03:35. | :03:37. | |
ensure this inquiry is effective. I would ask | :03:38. | :03:50. | |
Madam Deputy Speaker, the mhnister, to consider whether the scope of the | :03:51. | :03:53. | |
inquiry should be increased to look at why this drug was known to be | :03:54. | :03:56. | |
potentially unsafe as early as the 1960s, even earlier. This w`s | :03:57. | :03:58. | |
apparently hidden. I should also mention that the last eight years | :03:59. | :04:00. | |
passed between 1967 and the time the adverse reaction committee said | :04:01. | :04:06. | |
there was cause for further investigation of Primodos. The | :04:07. | :04:13. | |
committee on the safety of ledicines issued its warning in 1975. Norway | :04:14. | :04:19. | |
and Sweden banned hormone pregnancy test product in 1970. Finland banned | :04:20. | :04:24. | |
them in 1971, Germany issued a warning notice in 1972, the USA in | :04:25. | :04:40. | |
1973, Australia, Ireland and the Netherlands in early 75. Finally the | :04:41. | :04:43. | |
UK on the 4th of June 19 75. Notably, a document shows comment by | :04:44. | :04:45. | |
Doctor Inman on 15th October 19 5, saying, we're defenceless in this | :04:46. | :04:48. | |
matter of the eight-year delay. The families affected are now concerned | :04:49. | :04:52. | |
about this inquiry being a whitewash and concerned about a Hillsborough | :04:53. | :05:03. | |
like situation where they h`ve failed to get information they have | :05:04. | :05:05. | |
repeatedly asked for. An article in a German newspaper reported that | :05:06. | :05:07. | |
from old court files it gained access which stated that thdre were | :05:08. | :05:16. | |
warnings in the late 60s from various animal tests, they had | :05:17. | :05:18. | |
knowledge of various side-effects of the hormone drug. Tests werd | :05:19. | :05:22. | |
corrected with different dosages, some dosages resulted in thd death | :05:23. | :05:27. | |
of foetuses. Other tests showed animals showed weight loss. In 971 | :05:28. | :05:33. | |
a scientist recorded a test dose was highly embryo toxic and a c`use of | :05:34. | :05:39. | |
early cell death. Earlier this year a major German radio station | :05:40. | :05:42. | |
broadcast a 45 minute documdntary on Primodos. Here are some of the brief | :05:43. | :05:48. | |
extracts of the story is told. My name is patron, my mum took a | :05:49. | :05:51. | |
pregnancy test but was unaw`re what consequences this would havd. Order, | :05:52. | :06:00. | |
can I remind the honourable lady she is a front bench spokesperson, this | :06:01. | :06:02. | |
is a backbench debate. We are already going to have to not impose | :06:03. | :06:06. | |
a formal time limit, but an informal time limit of ten minutes. Hf you | :06:07. | :06:10. | |
did get to the end of her speech we'd be very grateful. Thank you | :06:11. | :06:15. | |
very much Madam Deputy Speaker, I'll round up as quickly as I can. I m | :06:16. | :06:22. | |
almost 50 years old, I have a deformation of my genitals, I have | :06:23. | :06:25. | |
had colostomy for the last 43 years. Enough is enough and I would like | :06:26. | :06:30. | |
100% confirmation on what h`ppened. Madam Deputy Speaker let me be clear | :06:31. | :06:33. | |
that for these families who suffered for decades it's not about loney, | :06:34. | :06:37. | |
it's absolutely about unveiling the truth. The Scottish Governmdnt has | :06:38. | :06:43. | |
raised and continues to raise the issue of the independent panel with | :06:44. | :06:45. | |
the UK Government and the NHRA. Public money is being | :06:46. | :06:57. | |
used for this inquiry and it would be dereliction of duty if it was | :06:58. | :07:01. | |
misused. We must ensure we do right by the victims of Primodos `nd have | :07:02. | :07:04. | |
an effective inquiry and get the answers for the family they so | :07:05. | :07:06. | |
desperately need. Johnny Rexnolds. Can I also thank my honourable | :07:07. | :07:08. | |
friend the member for Bolton South East for securing the debatd and say | :07:09. | :07:13. | |
it's a privilege to follow those fine speeches from my fine friends. | :07:14. | :07:21. | |
My constituent Susan from Stoney Bridge. It was in the early 70s | :07:22. | :07:24. | |
Susan suspected and hoped she was pregnant. With no home you hn stream | :07:25. | :07:28. | |
pregnancy testing kit avail`ble she did what any woman of her gdneration | :07:29. | :07:33. | |
would do, she visited her local GP. That simple visit, that routine | :07:34. | :07:38. | |
appointment, was to haunt hdr with a need for answers for the rest of her | :07:39. | :07:43. | |
life. Like 1.5 million others in the generation, several of whosd stories | :07:44. | :07:47. | |
we were learning about todax, Susan's GP prescribed a couple of | :07:48. | :07:50. | |
pills to be taken one day apart to determine if she was indeed | :07:51. | :07:56. | |
pregnant. If she wasn't she would bleed, if she was, she would not. | :07:57. | :07:58. | |
These bills were handed over without lengthy explanation, without | :07:59. | :08:00. | |
detailed precaution, without any warning. These pills Susan now knows | :08:01. | :08:07. | |
to be Primodos. The Primodos she took contained an unfathomably | :08:08. | :08:15. | |
strong cocktail of hormones. Ten mg of... Of the Nile Astrelle. These | :08:16. | :08:23. | |
hormones in these doses equ`te to 14 morning after pills or 157 | :08:24. | :08:27. | |
contraceptive pills. Yet many patients, like Susan, had this most | :08:28. | :08:40. | |
optimistic of moments of thdir lives, visibly trusted doctor. In | :08:41. | :08:42. | |
1972 Susan's beautiful baby daughter Sarah was born. Time would tell that | :08:43. | :08:45. | |
Sarah had severe learning difficulties, now 44 Sarah will | :08:46. | :08:48. | |
never enjoy her live independently. She relies on others for her care, | :08:49. | :08:54. | |
she'll never work, marry, h`ve her own children. The family face the | :08:55. | :08:58. | |
challenges or families with a loved one with limitations do. Thd | :08:59. | :09:09. | |
obstacles, the what ifs. Six years after Sarah was born Primodos was | :09:10. | :09:11. | |
withdrawn from the medical larket amid fears it prompted inst`nt | :09:12. | :09:13. | |
miscarriage. For many women its stated purpose of indicating whether | :09:14. | :09:15. | |
you are pregnant may have bden more like pregnant or not any more. For | :09:16. | :09:24. | |
those women fortunate enough to carry their babies to term, | :09:25. | :09:26. | |
thousands may never know whdther the wide-ranging disabilities their | :09:27. | :09:28. | |
children share from brain d`mage to heart defects, sensory impahrments, | :09:29. | :09:33. | |
under underdeveloped limbs lay have been caused by home pregnancy | :09:34. | :09:38. | |
testing. By these allegedly harmless little pills, which many researchers | :09:39. | :09:42. | |
and doctors queried at the time pills to be decisively discontinued. | :09:43. | :09:48. | |
I didn't rise today to suggdst every single disability or birth defect | :09:49. | :09:57. | |
originating from the period of its use was caused by Primodos, that | :09:58. | :09:59. | |
would be speculative. I do not rise to say at this stage any spdcific | :10:00. | :10:01. | |
reparations from the manufacturer should be given or to ask the | :10:02. | :10:05. | |
government, NHS or pharmacettical industry to take speculation as | :10:06. | :10:12. | |
fact. I stand here today saxing we need to give women like Sus`n the | :10:13. | :10:14. | |
opportunity to examine whether that speculation is fact. Whether | :10:15. | :10:16. | |
suspicion could give way to transparency, whether peace of mind | :10:17. | :10:19. | |
is a price worthy of investhgation. Because I do believe at this time | :10:20. | :10:26. | |
there should be a public enpuiry into the safety of Primodos. | :10:27. | :10:38. | |
Into its passage onto GP's shelves. Its effects on babies that survived | :10:39. | :10:42. | |
and those who did not. It m`y not be possible to identify all thd | :10:43. | :10:44. | |
answers, but it's nonetheless the time to ask the right questhons I | :10:45. | :10:47. | |
myself am a father of four beautiful children. My eldest son has | :10:48. | :10:49. | |
pronounced autism and learnhng difficulties, is absolutely | :10:50. | :10:51. | |
wonderful, I love him and I always will. I can't pretend through the | :10:52. | :10:56. | |
initial years of his diagnosis, and in many challenging situations that | :10:57. | :10:59. | |
followed, any parent is alw`ys in a position where they ask thelselves, | :11:00. | :11:08. | |
while my child? What has catsed the condition? Is it something we did? | :11:09. | :11:11. | |
Listening to this debate I'l glad my son is a millennium baby, not a | :11:12. | :11:14. | |
child of the 60s and 70s. If there was the slightest hint is lhfe | :11:15. | :11:17. | |
chances might have been rocked by something preventable and | :11:18. | :11:19. | |
unnecessary, I would find that very difficult indeed to deal with. That | :11:20. | :11:23. | |
is the importance of a rigorous investigation into this drug, that | :11:24. | :11:37. | |
goes into the need to examine the past. We must call for this | :11:38. | :11:39. | |
investigation because failure to do so may jeopardise something so | :11:40. | :11:41. | |
important and fundamental to our treasured NHS. The implicit trust | :11:42. | :11:43. | |
that your doctor knows what is best for you. If we allow potenthally | :11:44. | :11:46. | |
harmful drugs to ease in and out without robust investigation permit | :11:47. | :11:51. | |
will chip away at the assur`nce trained professionals know what is | :11:52. | :11:59. | |
best for us. Another one of my constituents was the notorious late | :12:00. | :12:01. | |
Doctor Harold Shipman. I have close friends who had a parent amongst his | :12:02. | :12:03. | |
victims, almost everyone in the town of hide know somebody affected by | :12:04. | :12:06. | |
the crimes of Harold Chipman. I ve experienced the most extremd | :12:07. | :12:09. | |
examples of what the abuse `nd the fundamental trust between doctor and | :12:10. | :12:13. | |
patient can do to rock a colmunity to its core. Our NHS doctors are | :12:14. | :12:17. | |
amongst the best in the world and each of us, the whole UK mental | :12:18. | :12:22. | |
profession, we owe them our gratitude for the tireless service | :12:23. | :12:25. | |
they give. A GP is more than a stranger in a room, they ard a | :12:26. | :12:30. | |
friend, confident, advocate, signposted to better health. No GP | :12:31. | :12:38. | |
wants to be in the awful position of wondering whether they have | :12:39. | :12:39. | |
dispensed prescriptions without being fully aware of the risk to the | :12:40. | :12:42. | |
patient who took the medication Let's not undermine the most | :12:43. | :12:45. | |
important of relationships, by failing to look closely enotgh at | :12:46. | :12:54. | |
the drugs which we have askdd them in the past to distribute. Let's put | :12:55. | :12:56. | |
Primodos under the microscope, for Susan, four Sarah, and for the | :12:57. | :12:59. | |
continued trust in our NHS. Madam Deputy Speaker, can I congr`tulate | :13:00. | :13:06. | |
the member for Bolton South East for her work in this area? But `lso for | :13:07. | :13:08. | |
obtaining this debate today. I'm here one behalf of my consthtuent, | :13:09. | :13:13. | |
Pamela from Garston, and her daughter Louise, a constitudnt who | :13:14. | :13:19. | |
lost a baby son and Sonya Fitzpatrick from Hillwood. @ll of | :13:20. | :13:21. | |
them believe, I think correctly the disabilities they or their children | :13:22. | :13:24. | |
live with, the losses they have had to | :13:25. | :13:41. | |
face, have been caused by Primodos being administered in pregn`ncy Not | :13:42. | :13:43. | |
for any therapeutic reason but simply as a test to determine | :13:44. | :13:46. | |
whether or not there was a pregnancy. Pamela's daughter Louise | :13:47. | :13:48. | |
's 42 years old. In 1973 Palela visited her doctor to find out if | :13:49. | :13:51. | |
she was pregnant and she was given Primodos. Her daughter Louise was | :13:52. | :13:53. | |
born in November that year with many severe disabilities. She has | :13:54. | :13:55. | |
extensive brain damage, cerdbral palsy. She has a right leg two | :13:56. | :14:05. | |
inches shorter than the left, her right foot four sizes smalldr than | :14:06. | :14:08. | |
the left. Spina bifida, scoliosis. She is partially deaf. She has | :14:09. | :14:10. | |
significant special needs. However, she lives a good life with her | :14:11. | :14:16. | |
family, 42 years old, and hdr family obviously value her tremendously. | :14:17. | :14:20. | |
But she has ongoing medical problems. My constituent, P`mela, | :14:21. | :14:28. | |
had her medical records go lissing when she was one of the people who | :14:29. | :14:33. | |
tried, with other families, to sue in the early 1980s. That is an issue | :14:34. | :14:39. | |
the honourable member for Lhvingston referred to in | :14:40. | :14:53. | |
respect of her constituents. Sonya Fitzpatrick from Halewood is also 42 | :14:54. | :14:57. | |
years old and, like Louise Lawdsley, she believes, I think correctly the | :14:58. | :14:59. | |
disabilities with which she was born and which affect everyday, whether | :15:00. | :15:01. | |
caused by her mother being given Primodos to see whether or not she | :15:02. | :15:04. | |
was pregnant. She has spina bifida, she has significant medical | :15:05. | :15:07. | |
problems. She has had a colostomy since being a young child. She has | :15:08. | :15:11. | |
significant ongoing difficulties with her feet, with her hands, and | :15:12. | :15:21. | |
other joints. She also has lived for 42 years with the effects of that | :15:22. | :15:27. | |
day when her mother went to find out whether or not she was pregnant I | :15:28. | :15:31. | |
first met Pamela Maudsley in 20 1. I've never heard -- I had ndver | :15:32. | :15:38. | |
heard of Primodos at the tile but as a former lawyer who used to conduct | :15:39. | :15:41. | |
medical negligence cases and product liability, I | :15:42. | :15:56. | |
wondered why I hadn't. I pr`ctised from 1990-1996 specialising in this | :15:57. | :15:58. | |
field amongst others. Products that cause harm, especially medical | :15:59. | :16:00. | |
products, where one of my focus is at the time and seeking the truth | :16:01. | :16:02. | |
and where appropriate compensation for those adversely affected was | :16:03. | :16:14. | |
what I sought to achieve. I've still never heard of Primodos, th`t is why | :16:15. | :16:17. | |
I'm present in this debate today, the story is my constituents and | :16:18. | :16:19. | |
others tell me are familiar to anyone who has practised as a lawyer | :16:20. | :16:21. | |
and product liability litig`tion. From thalidomide tip Primodos, to | :16:22. | :16:23. | |
vaccine damage, there are common themes. Lack of warnings about | :16:24. | :16:25. | |
special effects, being calldd a fussy mother when the disabhlities | :16:26. | :16:28. | |
of a young baby first noticdd and raised with medical practithoners. | :16:29. | :16:30. | |
Denial of causality when thdre are reports of adverse effects. The | :16:31. | :16:34. | |
sudden and explicable loss of medical records that indicated what | :16:35. | :16:39. | |
was prescribed and when. Often just for the week of the month, H've come | :16:40. | :16:43. | |
across it very many times in litigation. Over at hostility and | :16:44. | :16:49. | |
lack of transparency when doubts are expressed. Even after withdrawal of | :16:50. | :16:58. | |
the product in question, no acceptance of liability by the drug | :16:59. | :17:00. | |
company, by regulatory agencies by the prescriber. A legal battle, as | :17:01. | :17:03. | |
also happened in this case, usually with gross inequality of arls. With | :17:04. | :17:05. | |
those that felt utterly unwhlling to concede any kind of liability or | :17:06. | :17:11. | |
causation or to cooperate at all with finding some way through the | :17:12. | :17:18. | |
difficulties that the victils and those who go on and suffer for many | :17:19. | :17:21. | |
years have to face. The consequences were always the same, Madam Deputy | :17:22. | :17:25. | |
Speaker, years of denial and agony for those affected, and consequence | :17:26. | :17:35. | |
failure to help alleviate the consequences or understand the | :17:36. | :17:37. | |
motives of the people who come forward. Agony for parents who | :17:38. | :17:39. | |
invariably blame themselves for what has happened to their children. | :17:40. | :17:42. | |
Particularly in a case like this, where there was no therapeutic | :17:43. | :17:48. | |
reason for taking this drug. Extremely long, frustrating, often | :17:49. | :17:52. | |
fruitless campaigns for truth and justice, often including fahled | :17:53. | :18:02. | |
litigation, as in this case, which usually fails on the basis of | :18:03. | :18:04. | |
causation. Or effectively bdcause there is no real cooperation, no | :18:05. | :18:07. | |
willingness to find the truth, just a defensive attitude from mddical | :18:08. | :18:10. | |
authorities, scientists, and often, I hesitate as it, but from | :18:11. | :18:13. | |
government. That is what I see going on here. | :18:14. | :18:18. | |
I think there is little doubt that hormonal pregnancy tests catsed the | :18:19. | :18:28. | |
birth defects which many falilies complained. There was significant | :18:29. | :18:31. | |
disquiet from the 1960s that there were adverse effects which led to | :18:32. | :18:35. | |
the kind of disabilities whhch Louise and Sonya now live whth. | :18:36. | :18:40. | |
Obviously, proving causation in individual cases is difficult, | :18:41. | :18:43. | |
particularly when medical rdcords have gone missing, but why should | :18:44. | :18:48. | |
these families have to provd that? Drugs using such hormones in such | :18:49. | :18:52. | |
doses were banned elsewhere. The fact that existing drugs usd these | :18:53. | :18:56. | |
hormones in much smaller doses does not mean the large dose versions | :18:57. | :19:00. | |
could not cause the kind of problems that we're looking at here. | :19:01. | :19:07. | |
Survivors such as Louise and Sonya have significant and ongoing health | :19:08. | :19:10. | |
problems and their families deserve the truth about what happendd, in | :19:11. | :19:14. | |
addition to getting the further help and assistance that they nedd. We | :19:15. | :19:18. | |
have this so-called independent review established by the Government | :19:19. | :19:22. | |
in October 2014 and can I s`y that I think the Government were rhght to | :19:23. | :19:27. | |
establish it. However, it does not seem to be going well. I am not sure | :19:28. | :19:32. | |
that it has the confidence of the families. I am not sure that it has | :19:33. | :19:35. | |
the confidence of those who have been fighting for so long to get to | :19:36. | :19:38. | |
the bottom of what happened. There seems to be a failure to work with | :19:39. | :19:42. | |
the families affected by thhs scandal. I have seen independent | :19:43. | :19:47. | |
reviews that work. The Hillsborough Independent panel springs to mind | :19:48. | :19:51. | |
and I have had a long assochation with that campaign and I know what | :19:52. | :19:55. | |
works and what doesn't. Inddpendent panels that work are not based on | :19:56. | :20:01. | |
expecting campaigners to sign confidentiality agreements before | :20:02. | :20:03. | |
they can even observe proceddings, they are not based on appointing | :20:04. | :20:09. | |
experts which are suspected by some families, rightly or wronglx to have | :20:10. | :20:13. | |
a conflict of interest, thex are not based on some proceedings bding so | :20:14. | :20:16. | |
slow and opaque with so little information coming out that those | :20:17. | :20:19. | |
affected become suspicious or don't know what is going on behind the | :20:20. | :20:24. | |
closed doors of their review. They are based on proper consult`tion, | :20:25. | :20:28. | |
obtaining full confidence from those affected. If this doesn't h`ppen, in | :20:29. | :20:32. | |
the end, no matter what the result is, it will make matters worse. It | :20:33. | :20:37. | |
will make the affected families feel there has been another establishment | :20:38. | :20:43. | |
whitewash and their hopes h`ve been raised in order to be dashed and | :20:44. | :20:47. | |
things have been swept under the carpet and the authorities, whoever | :20:48. | :20:51. | |
they are, don't really want to find out what happened because it is | :20:52. | :20:55. | |
inconvenient. And I think the Government minister must now, in | :20:56. | :20:59. | |
view of this debate, in view of the concerns that many of these families | :21:00. | :21:03. | |
are expressing get a grip of this process and make sure that ht works. | :21:04. | :21:09. | |
He must take some steps to obtain the confidence of the familhes, to | :21:10. | :21:14. | |
be much more transparent about what is going on, to have a propdr | :21:15. | :21:21. | |
understanding of what it is sought to achieve through this process | :21:22. | :21:27. | |
because if there is another whitewash, if this review doesn t | :21:28. | :21:31. | |
work, these families and thdir members of Parliament, whether it is | :21:32. | :21:38. | |
asked for our successes, we will not go away. We will be coming back to | :21:39. | :21:42. | |
the Minister, we will be coling back to the Government and we will make | :21:43. | :21:48. | |
sure that our constituents, those families get the truth, get the | :21:49. | :21:52. | |
information and get the acknowledgement and help th`t they | :21:53. | :21:56. | |
deserve. Thank you, Madam Deputy Spe`ker It | :21:57. | :22:03. | |
was fantastic to hear that compelling speech by my honourable | :22:04. | :22:08. | |
friend. I think a theme this developing here. One thing we have | :22:09. | :22:13. | |
learned in this country timd and time again, from many public | :22:14. | :22:18. | |
enquiries into various issuds is the need to ensure that the victims of | :22:19. | :22:25. | |
injustice, survivors and thdir families, in whatever format, have | :22:26. | :22:28. | |
the opportunity to have thehr say in as transparent and open way as | :22:29. | :22:32. | |
possible, with no red glittdry industry cosying up. -- regtlatory | :22:33. | :22:40. | |
industry. The other thing is the need to bend over backwards to go | :22:41. | :22:44. | |
the extra mile to assure thd victims of those speaking on their behalf | :22:45. | :22:48. | |
have full confidence in the mechanism setup to seek out the | :22:49. | :22:52. | |
truth of what may have occurred How many times in this country have we | :22:53. | :22:57. | |
failed to investigate matters properly, only to have to rdvisit | :22:58. | :23:01. | |
the issue and then conclude that those who sought justice were right | :23:02. | :23:09. | |
in the first place? It is as if a blanket is drawn over a difficult | :23:10. | :23:16. | |
and challenging issue to prdvaricate and procrastinate until those | :23:17. | :23:20. | |
affected by the initial isste are worn out, worn down or die. | :23:21. | :23:26. | |
Institutions live on, peopld died. It is a cynical game of cat and | :23:27. | :23:30. | |
mouse with the victims being the mouse, but is often a mouse that | :23:31. | :23:36. | |
Ross. And in this case it draws no cover-up. After all the miscarriages | :23:37. | :23:42. | |
of justice which have occurred over the years in this country, do we | :23:43. | :23:45. | |
really need to drag institutions and organisations kicking into the light | :23:46. | :23:49. | |
of examination, how has it come to that with the experience we have had | :23:50. | :23:54. | |
in this country? Have we le`rned no lessons from our own historx in this | :23:55. | :23:59. | |
given all the enquiries we have had? Are institutions so arrogant they | :24:00. | :24:03. | |
feel they are immune to the democratic process, to scrutiny to | :24:04. | :24:07. | |
accountability? What does it come to when this House has to conshder such | :24:08. | :24:13. | |
a motion by my honourable friend, the member for Bolton South East, we | :24:14. | :24:17. | |
shouldn't have to do it. We should not have to do this today. @t this | :24:18. | :24:23. | |
stage, I must say what a relarkable job she has done for those people | :24:24. | :24:28. | |
affected by this scandal, bdcause that is what it is, pure and simple, | :24:29. | :24:34. | |
a scandal. She has been ten`cious in pursuing this issue on the half of | :24:35. | :24:37. | |
those people, the families `ffected by this sorry tale of incompetence, | :24:38. | :24:45. | |
the deficiency and lack of will to put this matter to the test and in | :24:46. | :24:50. | |
her, they have a doughty ch`mpion. My honourable friend has lahd out | :24:51. | :24:53. | |
the inadequacies of the process so far and I do not want to repeat for | :24:54. | :24:58. | |
a sake of repeating what thdy have already said. They could not have | :24:59. | :25:03. | |
been any clearer, it could not have been any more forensic or p`ssionate | :25:04. | :25:06. | |
what they have had to say. The member for Livingston, make a field, | :25:07. | :25:13. | |
Stalybridge and hide. Howevdr, I will make two points in closing | :25:14. | :25:18. | |
First is my continued support for the honourable member for Bolton | :25:19. | :25:24. | |
East and the families, some of whom are my constituents. I am grateful | :25:25. | :25:28. | |
for the work done on their behalf so far. There is not time for subtlety | :25:29. | :25:33. | |
in this particular one. So secondly, if the people in the institttions | :25:34. | :25:35. | |
who have been given the task of getting to the bottom of thhs issue, | :25:36. | :25:39. | |
paid for by the taxpayer and yes, the families here today, if they are | :25:40. | :25:45. | |
not prepared to fulfil that task to the full satisfaction of thd | :25:46. | :25:48. | |
families and the thousands of people who are affected by this, n`mely the | :25:49. | :25:53. | |
victims, I say move aside and let others get on who want to expose the | :25:54. | :25:59. | |
inadequacies of the system that has left these people are dressdd for | :26:00. | :26:04. | |
decades. Let others, if necdssary, get on with the job. Enough is | :26:05. | :26:09. | |
enough, Madam Deputy Speaker. I hope and trust that the Minister will | :26:10. | :26:13. | |
hear the just and reasonabld pleas of our constituents, take this | :26:14. | :26:17. | |
motion away and put it into affect both to the letter and in its | :26:18. | :26:24. | |
spirit. It has gone on for 40 years, it is really time to draw a line in | :26:25. | :26:31. | |
the sand from this injusticd, to give closure and peace to the | :26:32. | :26:37. | |
victims and families. Madam Deputy Speaker, anything less would be | :26:38. | :26:42. | |
betrayal of both our duty and a betrayal of our constituents. | :26:43. | :26:50. | |
First of all, I would like to thank the honourable member for Bolton | :26:51. | :26:52. | |
South East, for bringing thhs debate to the Chamber, and also, I would | :26:53. | :26:58. | |
like to congratulate her for her work on taking up this mattdr and | :26:59. | :27:02. | |
her continued pressure on the Government and her persistence, | :27:03. | :27:08. | |
pressurising the Government to agree to hold an enquiry, and now to make | :27:09. | :27:15. | |
sure they are held accountable on that promise. Also wish to speak out | :27:16. | :27:20. | |
in support and admiration for the campaigners, particularly M`rie | :27:21. | :27:26. | |
Lyon, whom it has been my pleasure to meet over the last coupld of | :27:27. | :27:32. | |
years. He campaigners have pursued justice on this issue over the | :27:33. | :27:37. | |
decades, to have their voicds heard and their questions answered. They | :27:38. | :27:42. | |
have shown resilience and fortitude in their search for clarification on | :27:43. | :27:48. | |
the possible association between the proscription of hormone pregnancy | :27:49. | :27:52. | |
tests cause in adverse effects in pregnancy and subsequent birth | :27:53. | :27:58. | |
defects in their children. @nd my predecessor in Hayward and | :27:59. | :28:02. | |
Middleton, Jean Dobbin, was working with constituents, trying to get | :28:03. | :28:07. | |
some answers to their strongly held beliefs that the proscription of | :28:08. | :28:10. | |
hormone pregnancy tests had led to birth defects in their children | :28:11. | :28:16. | |
After Jim's sad death in 2004, I have carried on his work and no one | :28:17. | :28:23. | |
was more pleased than me whdn finally in 2015, 40 years on since | :28:24. | :28:28. | |
hormone pregnancy tests werd banned, an independent enquiry was finally | :28:29. | :28:34. | |
setup. The families and children, the campaigning group, the | :28:35. | :28:38. | |
Association of ordering dam`ged by hormone pregnancy tests would | :28:39. | :28:41. | |
finally receive the answer hs that they had sought for so long. And it | :28:42. | :28:48. | |
is interesting to just take time to consider why hormone pregnancy tests | :28:49. | :28:52. | |
were banned in 1975 will stop it was following advice from the former | :28:53. | :28:58. | |
Committee on the Safety of Ledicines that these hormonal preparations | :28:59. | :29:02. | |
should not be used as a pregnancy test, that a warning about ` | :29:03. | :29:07. | |
possible hazard in pregnancx should be inserted in all promotional | :29:08. | :29:11. | |
literature. Just consider that, this was a pregnancy test and a warning | :29:12. | :29:15. | |
should be inserted that thex should not be used in pregnancy. The | :29:16. | :29:21. | |
Committee on the Safety of Ledicines wanted a clear statement th`t | :29:22. | :29:24. | |
pregnant women should not use these products. Clearly, that had been | :29:25. | :29:30. | |
sufficient adverse reactions reported for the Committee on the | :29:31. | :29:34. | |
Safety of Medicines to reach these conclusions. But I can remelber last | :29:35. | :29:38. | |
year when the enquiry was fhnally agreed to how jubilant we fdlt, that | :29:39. | :29:44. | |
finally, the evidence would be examined, causal relationshhps would | :29:45. | :29:50. | |
be analysed, maybe even an explanation for the medical notes | :29:51. | :29:54. | |
which had mysteriously gone missing would be achieved. Finally, we felt | :29:55. | :29:58. | |
we had achieved something, we felt we would get answers to the | :29:59. | :30:02. | |
questions that have tormentdd affected families for decadds. The | :30:03. | :30:07. | |
Government has promised in good faith that the enquiry would be | :30:08. | :30:10. | |
transparent and would be in good time. But disappointingly, the | :30:11. | :30:20. | |
enquiry has delivered neithdr on transparency or timeliness so far. | :30:21. | :30:24. | |
And questions need to be answered. Why did it take over easier to set | :30:25. | :30:28. | |
up the expert working group? Why has the working group only met three | :30:29. | :30:32. | |
times? And at what stage is the enquiry at now? We have no hdea | :30:33. | :30:39. | |
Reassurances and clarity must now be given by the Government. Thd expert | :30:40. | :30:45. | |
working group has also to bd more accountable and more open to | :30:46. | :30:49. | |
scrutiny. It has to engage `nd work with the Association of shotlder and | :30:50. | :30:54. | |
damaged by hormone pregnancx tests, to address their concerns as to the | :30:55. | :30:59. | |
current progress or lack of it in the enquiry process. And thd key | :31:00. | :31:02. | |
concern, which has been voiced by many members which is the expert | :31:03. | :31:09. | |
working group have also signed a confidentiality clause which many | :31:10. | :31:11. | |
feel compromises the possibhlity of a fairer and a just outcome. The | :31:12. | :31:18. | |
former minister for life schences set out quite clearly to thd | :31:19. | :31:23. | |
families that his government would establish a means for closure and | :31:24. | :31:28. | |
justice, while alleviating their fears that past failings wotld be | :31:29. | :31:34. | |
investigated. The delays and deliberations of following through | :31:35. | :31:37. | |
on these promises should now be over. The Government should now give | :31:38. | :31:41. | |
answers and make sure it delivers on that deal to the thousands of | :31:42. | :31:50. | |
families affected. Thank yot. Thank you, Madam Deputy Spe`ker | :31:51. | :31:54. | |
Thank you for the opportunity to speak in this debate today on this | :31:55. | :32:01. | |
ever stating lease sad topic and to thank the Backbench Business | :32:02. | :32:03. | |
Committee, also the member for Bolton South East for securhng the | :32:04. | :32:13. | |
debate today. -- to speak on this debate today on this devast`tingly | :32:14. | :32:23. | |
sad topic. I also want to p`y tribute to Marie Lyon and the | :32:24. | :32:28. | |
hormone pregnancy test camp`ign on telling their own stories, | :32:29. | :32:31. | |
particularly in the case of Marie, telling the story of her datghter in | :32:32. | :32:35. | |
the media. There is much th`t we take for granted today with the | :32:36. | :32:39. | |
improvements in health care and the use of pregnancy tests todax. This | :32:40. | :32:50. | |
sheds a very important light on what happened 40 years ago and m`ke it a | :32:51. | :32:54. | |
real matter of great sadness and shame that it has happened hn our | :32:55. | :33:00. | |
country. Many of the tributds, the stories that we have heard today | :33:01. | :33:04. | |
show that so many are living with the consequences, and that we must | :33:05. | :33:10. | |
learn the lessons. This enqtiry and our confidence in its findings is | :33:11. | :33:15. | |
critical, not only to close this chapter of our history, but also to | :33:16. | :33:19. | |
make sure that lessons are learned, and there are clear findings that | :33:20. | :33:24. | |
will be adhered to in the ftture when it comes to regulation and the | :33:25. | :33:28. | |
description of how medications should be used. | :33:29. | :33:32. | |
When I first came to hear of this issue I found it very hard to | :33:33. | :33:42. | |
comprehend why it seems to have taken so long for those who were | :33:43. | :33:44. | |
prescribed Primodos to get the clarity and the answers for what | :33:45. | :33:56. | |
happened to them, for this hssue to be comprehensively and independently | :33:57. | :33:58. | |
researched, and for an expl`nation to be given as to why the drug | :33:59. | :34:00. | |
continued to be used after concerns were raised, and for there to be an | :34:01. | :34:03. | |
apology and justice for famhlies affected. Madam Deputy Speaker | :34:04. | :34:09. | |
studies in the UK and elsewhere from the late 1960s to the early 70s | :34:10. | :34:13. | |
suggested a link between thd use of hormone pregnancy tests and the | :34:14. | :34:22. | |
range of abnormalities that were then caused, including cleft lip, | :34:23. | :34:27. | |
limb reduction, and heart abnormality. Beth and Dixon from my | :34:28. | :34:32. | |
constituency was affected after her mother took the drug. And I want to | :34:33. | :34:36. | |
thank her for having the cotrage to comment me be about this | :34:37. | :34:47. | |
issue and for giving me perlission to share her story with the house. | :34:48. | :34:51. | |
She says, my name is Beth and Dixon. I'm 48 years old and work as an | :34:52. | :34:54. | |
occupational therapist in wdst London. I was born in 1968 hn south | :34:55. | :34:57. | |
Wales with heart and limb ddfects that have impacted on my entire | :34:58. | :35:01. | |
life. My mother was given Primodos, and oral pregnancy test, by her | :35:02. | :35:07. | |
doctor. I believe that is the cause of these physical defects. @long | :35:08. | :35:12. | |
with members of the Association for children damaged by hormone | :35:13. | :35:17. | |
pregnancy tests, and supporting the inquiry into how this damaghng drug | :35:18. | :35:19. | |
could have been prescribed to mothers when there were alrdady | :35:20. | :35:33. | |
worries about its safety. She says, I feel it's important accountability | :35:34. | :35:36. | |
is accepted by the drug company who put profit before patient s`fety. | :35:37. | :35:38. | |
And for the government to acknowledge its responsibilhty for | :35:39. | :35:40. | |
not ensuring citizens of thhs country were protected from harm. | :35:41. | :35:42. | |
She says, I was born with a heart murmur and fully formed bonds in my | :35:43. | :35:47. | |
feet. I experience shortage of breath as a child, slept poorly as a | :35:48. | :35:50. | |
baby, and was restricted and sporting activities. The he`rt | :35:51. | :35:57. | |
murmur did not require surghcal intervention but I have frepuent and | :35:58. | :36:02. | |
regular visits to cardiologhsts She says, I suspect many associ`tion | :36:03. | :36:09. | |
members can relate to waiting to see the doctor in hospital in the 7 s | :36:10. | :36:12. | |
and 80s, and knowing where xou are in the queue because you can see the | :36:13. | :36:18. | |
thickest medical record in the stack, and knowing it's yours. | :36:19. | :36:20. | |
Thankfully the introduction of electronic medical records leans I | :36:21. | :36:23. | |
don't suffer that particular humiliation any more. The ddfects in | :36:24. | :36:30. | |
the bones of my toes became more obvious as I grew. From my darliest | :36:31. | :36:35. | |
memories, around six years old, I can remember pain in both fdet that | :36:36. | :36:40. | |
prevented me from participating fully in activities at school. When | :36:41. | :36:46. | |
I was nine years old, the orthopaedic surgeon in the local | :36:47. | :36:52. | |
spittle recommended surgery to address the deformed joints. He felt | :36:53. | :37:00. | |
although I was still growing, the pain I was experiencing needed to be | :37:01. | :37:02. | |
addressed sooner. I had my first orthopaedic surgery in 1980. The | :37:03. | :37:08. | |
problems have persisted and I have required six further surgic`l | :37:09. | :37:13. | |
interventions since then. The pain today varies depending on the | :37:14. | :37:23. | |
activity. Prolonged standing or walking is painful. I've bedn | :37:24. | :37:25. | |
fortunate to have excellent health care in South Wales and West London | :37:26. | :37:27. | |
to address my physical impahrments. I'm lucky enough to have loving | :37:28. | :37:30. | |
parents and a husband, who has given me the care and strength to support | :37:31. | :37:37. | |
them and deal with the emothonal strain of the ongoing difficulties. | :37:38. | :37:50. | |
She goes on to say, I've bedn given a full life, I've been able to live | :37:51. | :37:53. | |
a full life, going to university, working full-time, making a | :37:54. | :37:55. | |
contribution to society in ly capacity as occupational thdrapist. | :37:56. | :37:57. | |
But every day at work I meet people with disability and physical or | :37:58. | :38:01. | |
cognitive impairments. But nothing prepared me for my first medting | :38:02. | :38:04. | |
with other association membdrs in June 20 14. She says, the sdverity | :38:05. | :38:12. | |
of impairments in some of mx contemporaries, both shocked and | :38:13. | :38:17. | |
angered me. Some have profotnd disabilities that have prevdnted | :38:18. | :38:21. | |
them from living a full lifd, and left them dependent on carers and | :38:22. | :38:26. | |
their families for care and support. This could have been avoided with | :38:27. | :38:32. | |
responsible oversight of thd drugs being given to expectant mothers and | :38:33. | :38:36. | |
more robust testing of the drugs before they were brought to market | :38:37. | :38:43. | |
here and across the world. She says, be sure I met with other association | :38:44. | :38:45. | |
members, I felt guilty that their suffering was so much worse than | :38:46. | :38:54. | |
mine. Then I felt guilty I was relieved at that. My mother, along | :38:55. | :38:57. | |
with the mothers of many melbers, felt guilty that she took a tablet | :38:58. | :39:01. | |
that caused these lifelong problems for their children. And, of course, | :39:02. | :39:08. | |
she says, logically I understand the guilt does not lie with me or my | :39:09. | :39:14. | |
mother, but in the absence of any form of apology or recognithon of | :39:15. | :39:19. | |
wrongdoing by the drug comp`ny or government. We do not have closure | :39:20. | :39:23. | |
or confidence that this won't happen again. I will give way. I thank the | :39:24. | :39:36. | |
Honourable lady for giving way, she makes an absolutely crucial point | :39:37. | :39:38. | |
that until families have answers they cannot deal with the trauma and | :39:39. | :39:41. | |
they cannot get the proper counselling and support thex | :39:42. | :39:43. | |
deserve. Seema Malhotra. I thank the honourable member for her | :39:44. | :39:45. | |
intervention. Certainly that is the reason why Beth and Dixon h`s | :39:46. | :39:52. | |
written to me and says she supports the inquiry to establish thd facts | :39:53. | :39:55. | |
and explain to the country, to understand how this could h`ve | :39:56. | :40:01. | |
happened, such a short whild after the thalidomide scandal. Madam | :40:02. | :40:07. | |
Deputy Speaker, Bethan's story highlights the issues around how | :40:08. | :40:11. | |
this drug was described, and the effect it still has to this day | :40:12. | :40:18. | |
I've been struck, as well, by the work of Marie and her campahgn. | :40:19. | :40:24. | |
Their patients, their systelatic and honest work. Working in partnership, | :40:25. | :40:33. | |
desiring to work in partnership simply for answers for justhce, and | :40:34. | :40:35. | |
to make sure everything is done so that this does not happen again But | :40:36. | :40:39. | |
I am concerned, Madam Deputx Speaker, that they are not being met | :40:40. | :40:45. | |
halfway by an inquiry that does not appear to have had effectivd | :40:46. | :40:50. | |
government governance. Wherd there are concerns from the panel, the | :40:51. | :40:55. | |
robustness of the procedures, the approach to evidence being | :40:56. | :40:59. | |
collected, and how it is behng analysed. I want to close mx | :41:00. | :41:13. | |
contribution with some questions to the minister, and some commhtments I | :41:14. | :41:16. | |
would like to hear being made today. Madam Deputy 's bigger, I bdlieve it | :41:17. | :41:19. | |
is time to make sure there hs commitment today to respond to the | :41:20. | :41:26. | |
issues raised. To do so forlally, in writing to the member who c`lled | :41:27. | :41:29. | |
this debate. To reconfirm the status of the inquiry. Its terms of | :41:30. | :41:32. | |
reference. And its timetabld for delivery. And how quality whll be | :41:33. | :41:37. | |
ensured. To explain what action is being taken to address the concerns | :41:38. | :41:45. | |
raised by honourable members today. And to have a commitment on public | :41:46. | :41:49. | |
record that ministers will see through their commitment on this | :41:50. | :41:52. | |
inquiry to a report and findings that will command the confidence of | :41:53. | :41:57. | |
this house. And, indeed, of the families and victims who have waited | :41:58. | :42:02. | |
so long for those answers and for justice. Emma Reynolds. Thank you | :42:03. | :42:08. | |
Madam Deputy Speaker. I would like to first pay tribute to my | :42:09. | :42:10. | |
honourable friend for Bolton South East for securing this debate and | :42:11. | :42:20. | |
for championing the concerns of the families affected by hormond | :42:21. | :42:22. | |
pregnancy tests in Parliament. I'd also like to pay tribute to the | :42:23. | :42:25. | |
families, all of those families that for years have been involved in the | :42:26. | :42:29. | |
Association for children dalaged by hormone pregnancy testing. One such | :42:30. | :42:36. | |
family lives in my constitudncy Stephen Bunting is a constituent of | :42:37. | :42:41. | |
mine. Early on during his mother Pat's pregnancy, she went to see the | :42:42. | :42:50. | |
GP to see if she was pregnant. She was given Primodos. Like anx of us, | :42:51. | :42:53. | |
she trusted her doctor. And her doctor, in turn, trusted thd advice | :42:54. | :43:01. | |
that he had been given. It was only months later when Stephen w`s born, | :43:02. | :43:07. | |
in 1967, his parents discovdred he was severely brain-damaged. That he | :43:08. | :43:11. | |
would suffer from a severe form of epilepsy all of his life, which | :43:12. | :43:16. | |
would get worse with age. And that he would suffer from daily seizures, | :43:17. | :43:20. | |
very often in the middle of the night. I've met Stephen, he came to | :43:21. | :43:26. | |
my surgery with his parents. He requires 24 hour care. His parents, | :43:27. | :43:33. | |
now in their mid and late 70s have cared for him all of his life and | :43:34. | :43:38. | |
they love him just as they love their two healthy daughters. But | :43:39. | :43:42. | |
they struggle to find respite because of the severity of his | :43:43. | :43:49. | |
seizures. It was only years later the family discovered the mddication | :43:50. | :44:02. | |
Pat had been given was equivalent of 40 contraceptive pills in one | :44:03. | :44:05. | |
dosage. You don't have to bd a medical professional for th`t to | :44:06. | :44:13. | |
ring alarm bells. It became apparent research had been carried ott as | :44:14. | :44:16. | |
early as the 1960s and into the 1970s. That had warned about the | :44:17. | :44:21. | |
lethal, and in some cases, toxic impact of these drugs. Indedd, in | :44:22. | :44:28. | |
1975 GPs were sent advice not to prescribe this drug any mord. It | :44:29. | :44:34. | |
took several more years before the drug was withdrawn from the market. | :44:35. | :44:38. | |
Research suggests it's likely many women who took this medicathon | :44:39. | :44:44. | |
suffered miscarriage or stillbirth. Those babies who survived this toxic | :44:45. | :44:50. | |
medication were severely affected by abnormalities or disabilitids. I was | :44:51. | :44:57. | |
pleased to learn, as was thd family, that the minister's predecessor | :44:58. | :45:02. | |
agreed to the establishment of this inquiry. However, as the Minister | :45:03. | :45:05. | |
has heard, from all the spe`kers in this debate, the families do have | :45:06. | :45:14. | |
serious, deep and genuine concerns, and it is my understanding they do | :45:15. | :45:19. | |
not have confidence in this inquiry. I will... I thank the honourable | :45:20. | :45:24. | |
lady for giving way and I would like to put on the record my thanks to | :45:25. | :45:33. | |
Steven's family come includhng Charlotte, who lives in West End, in | :45:34. | :45:36. | |
my constituency, who came to see me to thank the APPG for the work they | :45:37. | :45:41. | |
have done on this. And to explain how her care carries on for Stephen, | :45:42. | :45:49. | |
as her parents advance with age I thank her for that intervention | :45:50. | :45:55. | |
Charlotte has been a tireless campaigner for trying to get to the | :45:56. | :45:58. | |
bottom of the truth of what happened in the 1960s and 1970s. I hope the | :45:59. | :46:03. | |
Minister when he winds up whll answer a number of questions about | :46:04. | :46:08. | |
the inquiry. We want him, as my right honourable friend said, to get | :46:09. | :46:13. | |
a grip on this inquiry. Will he guarantee all the relevant dvidence | :46:14. | :46:21. | |
is put before the inquiry? Because as the honourable lady for | :46:22. | :46:25. | |
Livingstone has suggested, there is great concern the evidence hs being | :46:26. | :46:30. | |
cherry picked. Will he guar`ntee this inquiry is independent, full | :46:31. | :46:39. | |
and transparent? And will hd make a commitment today to this hotse and | :46:40. | :46:41. | |
to the families here present, that he will undertake to do everything | :46:42. | :46:44. | |
in his power that this inquhry will get to the bottom of what h`ppened? | :46:45. | :46:49. | |
Why evidence in the 1960s about the harmful and indeed it devastating | :46:50. | :47:00. | |
impact of this drug was ignored for so long? Why it continued to be | :47:01. | :47:03. | |
prescribed. Why it seemed there was a medical cover-up. Why it took so | :47:04. | :47:06. | |
long to be banned. And what was behind is the continuous regulatory | :47:07. | :47:16. | |
failure. The family I represent like any other family, though they | :47:17. | :47:19. | |
might not admit to this, wotld of course like more help to care for | :47:20. | :47:22. | |
Stephen. But they are not driven by a desire for compensation. They are | :47:23. | :47:25. | |
driven by a long and angry search for truth and justice. And they | :47:26. | :47:33. | |
don't want a whitewash, thex want to have confidence in this inqtiry | :47:34. | :47:37. | |
Though regrettably they do not. I would urge the Minister tod`y to | :47:38. | :47:46. | |
ensure they get the truth and Justice, surely they deservd nothing | :47:47. | :47:47. | |
less. Jacob Rees-Mogg. Along with other members I want to | :47:48. | :47:57. | |
pay tribute to the member for Bolton South East who has run a terrific | :47:58. | :48:01. | |
campaign on this issue, has been tireless on it, has set up the APGG | :48:02. | :48:10. | |
and has raised a concern whhch ought to be central to the Governlent I | :48:11. | :48:17. | |
want to focus on the enquirx and the need to establish faith with the | :48:18. | :48:20. | |
families who have been involved with what has happened in relation to | :48:21. | :48:25. | |
Primodos. It seems to me th`t there is a strong primer face the case | :48:26. | :48:29. | |
that something was wrong with this drug and it was known to thd | :48:30. | :48:35. | |
authorities and they have f`iled to act on it for an extended pdriod. If | :48:36. | :48:40. | |
you look at the evidence it was first warned about on the 10th of | :48:41. | :48:45. | |
July in 1967 and the adversd reaction committee felt there was | :48:46. | :48:48. | |
concern for further investigation, and yet it was eight years later in | :48:49. | :48:54. | |
1975 when Primodos was said not to be proscribed for people who were | :48:55. | :48:59. | |
pregnant. This seems to me to be so irresponsible when the risks of | :49:00. | :49:02. | |
prescribing drugs to pregnant women are so particularly high. And this | :49:03. | :49:09. | |
comes as the investigation `nd enquiry is taking place. Governments | :49:10. | :49:15. | |
are amazingly good at apologising for things which happened so long | :49:16. | :49:19. | |
ago that nothing could be done about it. I seem to remember that one | :49:20. | :49:24. | |
government apologised for the Irish potato famine 150 years aftdr it | :49:25. | :49:27. | |
happened but that does no good to anybody. What governments nded to do | :49:28. | :49:32. | |
is apologise for things while people are still alive. But when they | :49:33. | :49:38. | |
haven't acted, when time has gone by, the onus of proof shifts to | :49:39. | :49:42. | |
them, that it is for governlents at that point to show how well they are | :49:43. | :49:46. | |
behaving and how properly they are going through the process. Ht is for | :49:47. | :49:52. | |
them to rebuild the trust whth the families, not for the familhes to | :49:53. | :49:56. | |
accept guarantees from the Government without any depth to | :49:57. | :49:59. | |
them. And therefore, with the appointments to this enquirx, with | :50:00. | :50:05. | |
the information being made `vailable to it, with the investigations that | :50:06. | :50:09. | |
are taking place, the Government has a long way to go to re-establish a | :50:10. | :50:15. | |
trust which was lost probably as long ago as 1975. It is in that | :50:16. | :50:18. | |
context that I hope the Minhster will respond to make it cle`r that | :50:19. | :50:24. | |
the Government understands the strength of the case that h`s been | :50:25. | :50:28. | |
made, will be looking at it with a genuinely open mind, and will see | :50:29. | :50:33. | |
the sense that not that things can be put right but will be making some | :50:34. | :50:38. | |
amelioration if it was found in the end that there was fault in what the | :50:39. | :50:41. | |
Government did, what the regulator did and of course what the drug | :50:42. | :50:45. | |
company did, and there are so many bits and pieces that cause | :50:46. | :50:53. | |
suspicion. The disappearancd of records is a particularly ilportant | :50:54. | :50:58. | |
one. Where did these records go to? As the honourable lady for Bolton | :50:59. | :51:01. | |
South East mention, a lot of the information being in German and | :51:02. | :51:05. | |
whether it is even being tr`nslated for the committee. And when the sort | :51:06. | :51:10. | |
of issues hangover and enquhry, the Government has a lot of work to do | :51:11. | :51:14. | |
it to re-establish trust so that members of this House and wore | :51:15. | :51:17. | |
importantly the people affected can believe that the enquiry is fair. So | :51:18. | :51:23. | |
I once again congratulate the honourable lady for what shd has | :51:24. | :51:26. | |
done. I don't want to go into specific cases because I thhnk those | :51:27. | :51:31. | |
will be judged by the enquiry, that it will be a proper process to | :51:32. | :51:36. | |
investigate whether the evidence is there on a widespread scale. But | :51:37. | :51:44. | |
with such a strong base casd that we already know, then we must have an | :51:45. | :51:50. | |
enquiry that people can trust. Justin Maddox. Thank you, M`dam | :51:51. | :51:55. | |
Deputy Speaker. Can my first congratulate the member for Bolton | :51:56. | :51:59. | |
South East and Livingston for securing this debate and I welcome | :52:00. | :52:02. | |
the well-informed and passionate debates we have heard from `cross | :52:03. | :52:07. | |
the House. I would also likd to pay tribute to Marie Lyon who h`s never | :52:08. | :52:13. | |
given up in her fight to ensure that parents like her get to the bottom | :52:14. | :52:16. | |
of what has happened to thehr Georgian and why. I would also like | :52:17. | :52:25. | |
to pay tribute to the all p`rty Parliamentary group ably ch`ired by | :52:26. | :52:29. | |
the member for Bolton South East. It was there campaigning which has led | :52:30. | :52:37. | |
to the work being setup which is the discussion today. Clearly, there are | :52:38. | :52:41. | |
very serious concerns about this process which do need to be | :52:42. | :52:45. | |
addressed. I think we should welcome the fact that the former Minister | :52:46. | :52:49. | |
for life sciences sought to set up an enquiry and unfortunatelx there | :52:50. | :52:54. | |
appears to be a divergence between the source type of process the | :52:55. | :52:59. | |
minister sought to establish and the way the process is currentlx | :53:00. | :53:03. | |
operating. As we have heard today hundreds of families have bden | :53:04. | :53:05. | |
affected by this issue and have suffered not only debilitathng | :53:06. | :53:15. | |
conditions and premature de`th. They have suffered a sense of injustice | :53:16. | :53:20. | |
and the pain of 40 years of questions left unanswered. Ly | :53:21. | :53:23. | |
honourable friend for Bolton South East made a central point about | :53:24. | :53:28. | |
where we go now which was that victims should be at the he`rt of | :53:29. | :53:32. | |
this process. The testimony that she gave on the half of the victims | :53:33. | :53:35. | |
clearly showed that that is not happening at the moment. My | :53:36. | :53:40. | |
honourable friend, the membdr for make a field spoke about her | :53:41. | :53:44. | |
constituents Marie Lyon who is on the panel and she gave a spdcific | :53:45. | :53:48. | |
example of her being requirdd to read 36 files in two weeks that she | :53:49. | :53:53. | |
cannot talk to anyone about, which is clearly a painterly absurd way to | :53:54. | :53:59. | |
go about business. The honotrable member for Livingston spoke | :54:00. | :54:03. | |
forcefully about her legitilate concerns about the impartiality of | :54:04. | :54:09. | |
the working group and the l`ck of any substantive response whdn those | :54:10. | :54:13. | |
concerns were raised. We also heard from other honourable members and a | :54:14. | :54:24. | |
particularly powerful speech. Time prevents me from going into too much | :54:25. | :54:28. | |
detail about what those honourable members contributions were but they | :54:29. | :54:32. | |
spoke passionately on behalf of their constituents and clearly | :54:33. | :54:35. | |
identified the issues that we need to address with the current process. | :54:36. | :54:41. | |
Madam Deputy Speaker, as we know, from the late 1960s warnings began | :54:42. | :54:52. | |
to emerge for the drug Primodos including birth defects and | :54:53. | :54:55. | |
miscarriage and it was finally decided that Primodos should not be | :54:56. | :55:05. | |
used as a hormone pregnancy test. Primodos continued to be provided | :55:06. | :55:08. | |
for women until its withdrawal from the market by Schering in 1878. In | :55:09. | :55:16. | |
1977 there were unbelievablx 70 3 prescriptions of Primodos to | :55:17. | :55:20. | |
pregnant women and that is the crux of this issue, the delays of | :55:21. | :55:23. | |
warnings are merging and anx action being taken to stop this drtg being | :55:24. | :55:28. | |
offered to women. We no steps were taken in Sweden, Germany, Fhnland, | :55:29. | :55:35. | |
the USA, Australia and Irel`nd up to five years before any warnings were | :55:36. | :55:38. | |
issued in the UK. That led to thousands of women taking the drug. | :55:39. | :55:46. | |
It is a scandal that familids are still waiting for answers about why | :55:47. | :55:49. | |
that was allowed to happen `nd there is a duty on all of us to m`ke sure | :55:50. | :55:54. | |
that is put right. When this issue was last abated in October 2014 the | :55:55. | :56:02. | |
families were very pleased with the former minister for life schences | :56:03. | :56:04. | |
agreed to set up an independent panel enquiry and he also committed | :56:05. | :56:07. | |
to the release of all inforlation that is held by the Departmdnt. The | :56:08. | :56:11. | |
also promised the committee would comprise of independent members and | :56:12. | :56:15. | |
they would assure the assochation is properly represented and has a | :56:16. | :56:19. | |
chance to give evidence. Finally, he stated he wanted to shed light on | :56:20. | :56:23. | |
the issue and bring an important closure in an era of transp`rency so | :56:24. | :56:27. | |
lessons can be learned and this never happens again. Madam Deputy | :56:28. | :56:31. | |
Speaker, we welcome the establishment of that process and | :56:32. | :56:34. | |
the assurances offered by the minister at that time. However, as | :56:35. | :56:39. | |
we heard today, there is now a gaping chasm between those | :56:40. | :56:43. | |
assurances and the process which is currently ongoing. I hope following | :56:44. | :56:46. | |
this debate the Minister will take urgent steps to ensure that the | :56:47. | :56:50. | |
families who have been throtgh so much can regain confidence hn this | :56:51. | :56:55. | |
process. In terms of independence, we have heard the selection process | :56:56. | :57:00. | |
of members of the panel can best be described as opaque, and serious | :57:01. | :57:08. | |
concerns have been raised about conflicts of interest. Can the | :57:09. | :57:12. | |
Minister say he is absolutely happy around the independence of the | :57:13. | :57:16. | |
members of the panel? It is vital that along with the panel bding | :57:17. | :57:20. | |
provided with every relevant piece of evidence, they also offered | :57:21. | :57:24. | |
sufficient time to consider it. The evidence must also be presented in | :57:25. | :57:28. | |
an accessible format as is good practice in a process of thhs | :57:29. | :57:33. | |
nature. If the Minister sathsfied with the way information is being | :57:34. | :57:36. | |
presented to the panel and can he confirmed that every piece of | :57:37. | :57:38. | |
information held by the Dep`rtment has been released? In terms of the | :57:39. | :57:42. | |
association being properly represented, as we have had just one | :57:43. | :57:48. | |
member of the association is entitled to attend meetings as an | :57:49. | :57:52. | |
observer and they have been required to sign a confidentiality clause. | :57:53. | :57:56. | |
That applies not only to thd discussions of the panel but also to | :57:57. | :58:00. | |
the documents that are being presented. How in those | :58:01. | :58:03. | |
circumstances can they raisd concerns about the process hf they | :58:04. | :58:08. | |
are prevented from talking `bout a? Can the minister explain whx such a | :58:09. | :58:13. | |
high level of secrecy is behng applied to a process when the | :58:14. | :58:16. | |
original aim was to bring all important closure in an era of | :58:17. | :58:20. | |
transparency? Justice must not only be done it must be seen to be done | :58:21. | :58:24. | |
and there is a danger this dnquiry is failing to properly servd the | :58:25. | :58:28. | |
people it was set up for. The Minister simply must address these | :58:29. | :58:34. | |
issues now if the enquiry is to bring closure and for the correct | :58:35. | :58:36. | |
lessons to be learned. Can the Minister say how some of thdse | :58:37. | :58:42. | |
issues mean the families will not get correct answers and does he not | :58:43. | :58:46. | |
agree that we owe them a process which is fair, transparent `nd most | :58:47. | :58:51. | |
importantly has their trust and confidence? During the last 40 years | :58:52. | :58:58. | |
the families have experiencdd grief, anger, a sense of injustice and in | :58:59. | :59:02. | |
some cases guilt, but despite this, their determination has nevdr waned. | :59:03. | :59:08. | |
I am incredibly proud that `fter 30 years Justice was finally sdrved for | :59:09. | :59:15. | |
three of my constituents after they were tragically killed when they | :59:16. | :59:18. | |
attended a football match. But justice was achieved after the | :59:19. | :59:24. | |
families did not give up and the families of those children harmed or | :59:25. | :59:27. | |
killed by hormone pregnancy tests will not give up either. Whx must | :59:28. | :59:31. | |
the injustice they have suffered become pounded by further injustice | :59:32. | :59:36. | |
by the sham of an enquiry which is painterly not fit for purpose? | :59:37. | :59:42. | |
Transparency, impartiality `nd completeness are not unreasonable | :59:43. | :59:46. | |
demands. Minister, please lhsten to the words you have heard today and | :59:47. | :59:56. | |
act upon them. David now at. Thank you, Madam Deputy Speaker. Can I | :59:57. | :00:00. | |
just say at the outset that nobody in the Government has any interest | :00:01. | :00:04. | |
other than getting to the truth of the matter and we are keen on this | :00:05. | :00:08. | |
side of the House as the people who have spoken today and indeed the | :00:09. | :00:13. | |
families who are watching and there is a process to be followed to make | :00:14. | :00:17. | |
that happen. We have had strong words today. We have heard | :00:18. | :00:22. | |
establishment whitewash. We have heard sham enquiry. We have heard a | :00:23. | :00:30. | |
blanket over the issues. I say again, nobody on this side of the | :00:31. | :00:32. | |
House has any interest on anything other than getting to the truth and | :00:33. | :00:36. | |
the process that was put into place two years ago had that at its heart. | :00:37. | :00:41. | |
Let me join others in congr`tulating first of all the member for Bolton | :00:42. | :00:45. | |
South East and Livingston for leading the charge on this, not just | :00:46. | :00:59. | |
today, but in terms of the @PPG It is massively important that those | :01:00. | :01:03. | |
whose lives have been adversely affected by drugs, albeit 40 or 50 | :01:04. | :01:07. | |
years ago feel the processes have now been put into place to lake sure | :01:08. | :01:11. | |
we can do what we can. I wotld also like to pay tribute from my side to | :01:12. | :01:17. | |
the Association of Children damaged by Hormonal Pregnancy Tests and | :01:18. | :01:24. | |
Marie Lyon and the work she has done and will continue to do unthl we get | :01:25. | :01:30. | |
to the truth of this matter. I am going to talk in some detail about | :01:31. | :01:34. | |
the progress on enquiry but it is very clear, as I listened to the | :01:35. | :01:41. | |
debate, that there isn't confidence between the association and the work | :01:42. | :01:48. | |
of the enquiry and that is true and I will give a commitment and I have | :01:49. | :01:51. | |
heard about people talking `bout letters which have been an `nswered. | :01:52. | :01:58. | |
And all that goes with that. That is an acceptable and I make thhs | :01:59. | :02:01. | |
commitment at the start to the association or to the APPG, that one | :02:02. | :02:06. | |
of the products that should come out of what we are talking about today, | :02:07. | :02:10. | |
is a letter from you in as luch detail as you want it to be, raising | :02:11. | :02:17. | |
as many concerns that you fdel you have, with the detail of enpuiry. | :02:18. | :02:21. | |
There were a lot of detailed points made today. Having done that, I | :02:22. | :02:27. | |
think we should have a meethng to make sure that you are contdnt with | :02:28. | :02:30. | |
the direction of where we are going to. But I will take the | :02:31. | :02:36. | |
intervention. I am grateful to the Minister and I'm grateful for the | :02:37. | :02:39. | |
offer he has just made. Will he accept though that part of the | :02:40. | :02:44. | |
problem is, if people don't have confidence in the process, hf they | :02:45. | :02:48. | |
don't feel the process is bding conducted in a transparent way and | :02:49. | :02:51. | |
there is evidence that that is the case, then people will say ht is | :02:52. | :02:56. | |
likely to be a whitewash. Hd needs to provide reassurance not just to | :02:57. | :03:01. | |
the families and to my honotrable friends, that it will be a | :03:02. | :03:08. | |
transparent process and in those circumstances people will h`ve more | :03:09. | :03:12. | |
confidence? I do accept that and that is why I made the offer that I | :03:13. | :03:16. | |
just made. I guess the cave`t we have in this is that in the end | :03:17. | :03:23. | |
science is a big part of whdre we need to get to and science finds its | :03:24. | :03:27. | |
own path and I want to talk a little bit about how we are trying to | :03:28. | :03:29. | |
achieve that. Two years ago the member for Mid | :03:30. | :03:39. | |
Norfolk, the Minister for lhfe sciences as he was then, established | :03:40. | :03:43. | |
an inquiry which at that tile was committed to an independent review | :03:44. | :03:49. | |
of the evidence. I'm attempting to find a scientific link betwden the | :03:50. | :03:55. | |
hormone pregnancy test in p`rticular Primodos, and the adverse effects on | :03:56. | :04:00. | |
pregnancy and all that go whth that. It's perhaps worth saying at this | :04:01. | :04:03. | |
point as mothers have said, this has an international issue. An hssue | :04:04. | :04:10. | |
around for 40-50 years. We `re the only country to have set up such an | :04:11. | :04:15. | |
inquiry and the only countrx to have attempted to find a scientific route | :04:16. | :04:21. | |
to the truth in that way. Two years ago, I'll make some progress and | :04:22. | :04:29. | |
come back. Two years ago thd MHS CR was charged with putting into place | :04:30. | :04:34. | |
this inquiry, they worked whth the commission for human medicines to | :04:35. | :04:37. | |
put into place an expert group, whose job it was to establish | :04:38. | :04:44. | |
whether we could find a scidntific link between the drugs prescribed | :04:45. | :04:50. | |
and the effect that took pl`ce. It took place, as I say, two ydars ago. | :04:51. | :04:59. | |
The first meeting was a year after them, it's a long time. I apologise | :05:00. | :05:02. | |
on behalf of the government for that, I think it's too long. I was | :05:03. | :05:05. | |
told the election took placd, I was told there was a purdah process but | :05:06. | :05:10. | |
it was too long. The group has met four times since then. The next | :05:11. | :05:16. | |
meeting will be Tuesday next week. I think we can, as a group, conclude | :05:17. | :05:23. | |
members of that inquiry will be watching our proceedings and | :05:24. | :05:25. | |
listening to some of the pohnts being made. The focus of thd review | :05:26. | :05:30. | |
at that time was on science, to establish whether it could be shown | :05:31. | :05:37. | |
there was a link between thd drugs prescribed and the adverse dffects. | :05:38. | :05:43. | |
Those terms of reference were subsequently altered in terls of | :05:44. | :05:45. | |
going into lessons learned. Certainly. I thank the Minister for | :05:46. | :05:51. | |
taking an intervention. I t`ke on board what he's saying. He's being | :05:52. | :05:55. | |
very positive and is clearlx listening to the concerns wd | :05:56. | :06:00. | |
phrased. On a couple of matters firstly, the fact we are thd only | :06:01. | :06:02. | |
country, that is surely a good thing given how far behind we lagged, we | :06:03. | :06:12. | |
have an opportunity to lead the world and show the world how this | :06:13. | :06:14. | |
can be done positively. Secondly, as he says, nobody on his side of the | :06:15. | :06:17. | |
house wanted to see the inqtiry fall down. Is it not therefore hhs duty | :06:18. | :06:20. | |
to intervene and make sure ht has the right resources, the right | :06:21. | :06:24. | |
expertise, and the right processes? There is nothing their deputy | :06:25. | :06:29. | |
speaker I disagree with, we all want this inquiry to work, the government | :06:30. | :06:35. | |
hasn't established an inquiry to fail, and inquiry not to have the | :06:36. | :06:38. | |
confidence of the Association. We need to get to the truth. It's a | :06:39. | :06:48. | |
scientific process and becatse it is it can be frustrating and long | :06:49. | :06:51. | |
winded, it can take a long time I want to talk a little bit about some | :06:52. | :06:55. | |
of the, I suppose, concerns raised. There are three types of concerns | :06:56. | :07:00. | |
raised during the afternoon. First of all, that the independent group | :07:01. | :07:11. | |
of experts that has been set up are not reviewing this issue in terms of | :07:12. | :07:14. | |
the regulatory concerns or the delays at that time. In particular, | :07:15. | :07:16. | |
not reviewing the failures of the committee on the safety of | :07:17. | :07:22. | |
medicines, here we heard about the 5--8-year delay that took place in | :07:23. | :07:25. | |
the UK. The UK wasn't the l`st country to ban distro, but ht wasn't | :07:26. | :07:29. | |
the first either. The second concern, and I'll talk in some | :07:30. | :07:35. | |
length, members of the expert group may not be independent, thex may | :07:36. | :07:38. | |
have not fully declared conflicts of interest. And somehow they `re | :07:39. | :07:47. | |
colluding... We've heard words like cover-up from some members... The | :07:48. | :07:49. | |
third concern is not all of the available evidence is being | :07:50. | :07:51. | |
considered by the group. We've heard about the issues of German ,based | :07:52. | :07:55. | |
material not being translatdd, all of that. I'll address all of those | :07:56. | :08:02. | |
three points. In terms of the first issue, we've heard there was a | :08:03. | :08:06. | |
regulatory failure here and the inquiry should be looking at that. I | :08:07. | :08:16. | |
say to the house at this pohnt, if the expert group, when they report, | :08:17. | :08:20. | |
that will be next spring, if they report a clear causal link, that is | :08:21. | :08:26. | |
the time we need to take further action in terms of issues stch as | :08:27. | :08:30. | |
regulation, liability, and `ll that go with that. The first step we are | :08:31. | :08:38. | |
taking is to establish the science. The group that has been set up is an | :08:39. | :08:41. | |
expert group, science lead. I think it's very important that we make it | :08:42. | :08:50. | |
clear in this house that we are not criticising individual membdrs of | :08:51. | :08:52. | |
that group, who are striving to get to the truth. And there is ` group | :08:53. | :08:56. | |
of eminent people. It would be quite wrong if we conflated what light be | :08:57. | :09:01. | |
the eventual need to look at the regulatory actions taken, to look at | :09:02. | :09:05. | |
the legal liabilities. The first step is to establish whether the | :09:06. | :09:12. | |
science takes us to that link. In spite of some of the comments made | :09:13. | :09:15. | |
today, I have to say, that hs not being done yet in any country. The | :09:16. | :09:20. | |
first serious attempt to do it is the attempt is now going on. The | :09:21. | :09:29. | |
second point is that somehow... The second point I would say is that the | :09:30. | :09:37. | |
expert working group is not impartial. Well, the | :09:38. | :09:56. | |
NHRA has taken a vigorous approach to evaluating and handling `ny | :09:57. | :09:59. | |
potential conflicts of interest No member of the expert working group | :10:00. | :10:02. | |
can have any interest in anx of the companies involved or their | :10:03. | :10:03. | |
predecessors. Members should not have publicly expressed a strong | :10:04. | :10:05. | |
opinion, favourable or unfavourable, about the possibility of birth | :10:06. | :10:08. | |
defects from these drugs. I think I had one of the contributions | :10:09. | :10:10. | |
earlier, talking about one of the members that had treated. If there | :10:11. | :10:12. | |
is evidence of that, we'll follow up on it. It's true one member was | :10:13. | :10:15. | |
removed, not from the expert group, from the advisory group, because it | :10:16. | :10:18. | |
was felt he had a conflict of interest. And it wasn't properly | :10:19. | :10:22. | |
declared. Action was taken puickly in respect of that. I said to the | :10:23. | :10:27. | |
house, this inquiry is chaired by a consultant gynaecologist from the | :10:28. | :10:33. | |
charmers centre in Edinburgh. 1 scientists drawn from some of the | :10:34. | :10:37. | |
best universities in the UK, we have no reason to believe any of these | :10:38. | :10:41. | |
people are any more interested or have any more reason not to want to | :10:42. | :10:46. | |
get to the truth than we do. On both sides of this house on that point. | :10:47. | :10:51. | |
Does he not realise how important it is that whatever the rights and | :10:52. | :11:00. | |
wrongs of the members of thd committee, its the families that | :11:01. | :11:04. | |
need to have confidence. In it. It is they who need to have th`t | :11:05. | :11:10. | |
confidence. There's no point saying they are wonderful people. The | :11:11. | :11:14. | |
families have concerns. If they are not assuaged one Way Or Another the | :11:15. | :11:18. | |
outcome will not have the confidence of the families. Madam Deputy | :11:19. | :11:31. | |
Speaker I said at the start of my remarks, the learning part `re taken | :11:32. | :11:33. | |
from my part of the debate, whatever we take in terms of truth, science, | :11:34. | :11:36. | |
doing the right thing, the families are not happy. I made the point at | :11:37. | :11:39. | |
the very start of this debate that we would do what we can to `mend | :11:40. | :11:44. | |
that. As well as that, though, and I think members on both sides need to | :11:45. | :11:47. | |
accept this, we need to get to the scientific truth. To get to the | :11:48. | :11:50. | |
scientific truth, there needs to be a scientific process. That hs part | :11:51. | :11:54. | |
of what has to happen here, it's why some of this is time-consumhng and | :11:55. | :11:57. | |
difficult. And we wish that it wasn't. I'm grateful to be the | :11:58. | :12:04. | |
minister, he's been generous in giving way. The terminology he is | :12:05. | :12:08. | |
using is not necessarily suhtable. I don't understand this to be a | :12:09. | :12:14. | |
scientific process per se. What I do understand is that it's an hnformed | :12:15. | :12:18. | |
judgment about the evidence available, which, understandably, is | :12:19. | :12:28. | |
best conducted by scientists. He was, in a previous existencd, a | :12:29. | :12:30. | |
lawyer. You'll understand the difference between the two | :12:31. | :12:33. | |
approaches. I'm guilty of m`ny things, Madam Deputy Speaker, but | :12:34. | :12:37. | |
I've never been a lawyer. I also think I do understand the dhfference | :12:38. | :12:41. | |
between the two processes and if I wasn't clear in that, I accdpt the | :12:42. | :12:47. | |
distinction he made. The only point I would make, again, is that this | :12:48. | :12:51. | |
panel has got 14 people, plts some lay members, who are not schentists, | :12:52. | :12:56. | |
14 people who are chosen with particular skills regarding the | :12:57. | :12:57. | |
issues involved. I know the member for Bolton South | :12:58. | :13:09. | |
East needs to sum up. I want to dress the third point, whether all | :13:10. | :13:12. | |
the evidence available will be reviewed by that expert grotp. The | :13:13. | :13:23. | |
answer is yes. It's the reason it's taking so long. A particular | :13:24. | :13:25. | |
question was raised regarding a great deal of evidence newlx come to | :13:26. | :13:28. | |
light, which was in German. All of that evidence will be translated, | :13:29. | :13:30. | |
all of the translations of that evidence put before that colmittee, | :13:31. | :13:36. | |
and the chairman of that colmittee will be responsible for enstring its | :13:37. | :13:39. | |
properly reviewed and looked at There is no intention that this | :13:40. | :13:41. | |
inquiry does anything other than properly | :13:42. | :13:52. | |
resourced and attempt to get to the truth. The truth is difficult for | :13:53. | :13:56. | |
something that happened 40-40 years ago. We need to accept that. I want | :13:57. | :13:59. | |
finish, Madam Deputy Speaker, making the same point I made at thd start. | :14:00. | :14:04. | |
I'm responsible, the governlent is responsible, for the efficacy of the | :14:05. | :14:07. | |
inquiry and we need to get to the right answer. It's also important, I | :14:08. | :14:11. | |
do accept this, that the inpuiry does not have the confidencd of some | :14:12. | :14:17. | |
of the stakeholders. It's not acceptable, not satisfactorx. I ll | :14:18. | :14:20. | |
make the same undertaking the Minister for life science m`y two | :14:21. | :14:30. | |
years ago, to try to put thd inquiry into place, we'll try to put that | :14:31. | :14:33. | |
right. I make the offer agahn. A detailed letter with the detailed | :14:34. | :14:35. | |
points being made will be answered and we'll have a meeting to discuss | :14:36. | :14:39. | |
that subsequently. Thank yot Madam Deputy Speaker. I want to thank all | :14:40. | :14:42. | |
the members who came and attended the debate today and I want to thank | :14:43. | :14:48. | |
the victims who are in the gallery here. Not all of them but some of | :14:49. | :14:52. | |
them. Also Marie Lyon. We don't often refer to those people but I | :14:53. | :14:58. | |
would effect my researcher who has been doing incredible work on this | :14:59. | :15:02. | |
for the last couple of years. Glad to hear the Minister has sahd | :15:03. | :15:07. | |
they'll meet with us. We ard happy to write more detailed information | :15:08. | :15:13. | |
about where our concerns ard. The only thing is, we need to elphasise | :15:14. | :15:18. | |
this again, my honourable friend mentioned just a minute ago, the | :15:19. | :15:24. | |
inquiry isn't so much about the medical evidence. They are not | :15:25. | :15:29. | |
carrying out experiments to ascertain whether there is ` | :15:30. | :15:33. | |
scientific link. The crux is, there was a lot of evidence avail`ble at | :15:34. | :15:38. | |
the time, it was a failure to do anything, that is the crux of it. | :15:39. | :15:41. | |
The victims have not been hdard properly so far, and that wd need | :15:42. | :15:49. | |
the inquiry to help. I take the assurances the Minister givds and | :15:50. | :15:53. | |
wait to see what happens. The question is as on the order paper. | :15:54. | :15:57. | |
This house may now adjourn. The question is that this house do now | :15:58. | :16:09. | |
adjourn. Thank you, Madam Deputy Spe`ker I | :16:10. | :16:22. | |
decided to call this debate because I wanted to highlight the cost of | :16:23. | :16:29. | |
living for disabled people. The truth is disabled people should be | :16:30. | :16:31. | |
able to learn, live and work independently without facing a | :16:32. | :16:33. | |
financial penalty. Unfortun`tely this is not the case. Whethdr | :16:34. | :16:35. | |
because of a huge digital divide or wheelchair | :16:36. | :16:51. | |
charge in taxis. Or unaffordable social care. Disabled peopld face a | :16:52. | :16:54. | |
financial penalty in almost every aspect of their life. When we | :16:55. | :16:56. | |
consider the ability to livd independently in 21st-century | :16:57. | :16:58. | |
Britain, we often think of factors such as growth, wages, pricds, and, | :16:59. | :17:01. | |
of course, any short-term shocks to the economy. As we try to ensure | :17:02. | :17:09. | |
taxpayers of this country c`n afford to get by, and put financial cost at | :17:10. | :17:12. | |
the heart of policy-making, often we overlook the fact disabled people | :17:13. | :17:16. | |
are facing financial penalthes that none of us have to face if we are | :17:17. | :17:24. | |
able able bodied. We don't think about the difficulties disabled | :17:25. | :17:28. | |
people face to live independently, and the extra costs they max face | :17:29. | :17:30. | |
from time to time. The root causes of these, investigathons have | :17:31. | :17:54. | |
been fragmented. Imbalances in the market mean the costs of thhngs | :17:55. | :17:56. | |
disabled people have to buy, assistive technology, remain harder | :17:57. | :17:58. | |
than they need to be. -- whhle you. Because of the shortage of time I | :17:59. | :18:01. | |
will focus... Order. I beg to move this house do now adjourn. Shall I | :18:02. | :18:04. | |
start again? In this debate because of the lack of time, I'll focus | :18:05. | :18:07. | |
mainly on the causes of extra cost rather than the well trodden path of | :18:08. | :18:10. | |
existing support payments. H acknowledge from the outset the | :18:11. | :18:15. | |
total to manage these extra cost is made all the more difficult by the | :18:16. | :18:19. | |
factory support is increasingly difficult to obtain. As most people | :18:20. | :18:25. | |
will be aware, the government is undertaking a second review into | :18:26. | :18:31. | |
payment. It must protect personal independence payment from any form | :18:32. | :18:35. | |
of taxation or means testing, so disabled people have adequate | :18:36. | :18:40. | |
support to help meet extra costs. The personal independence p`yment | :18:41. | :18:44. | |
assessment cannot be said to reflect the extra costs disabled people | :18:45. | :18:50. | |
face. It is clear the government must redesign the personal | :18:51. | :18:53. | |
independence payment assesslent so it more accurately captures the | :18:54. | :18:57. | |
level of disabled people's dxtra costs. | :18:58. | :19:16. | |
It seems a grave injustice that disabled people face disproportional | :19:17. | :19:20. | |
costs to live a life of dignity and independence. I'm of the firm belief | :19:21. | :19:23. | |
in a society is judged by how it protects the most vulnerabld and the | :19:24. | :19:25. | |
most needy. If we allow these costs to mount, we are failing to protect | :19:26. | :19:32. | |
the most vulnerable and needy. In my constituency there are around 1 ,000 | :19:33. | :19:37. | |
disabled people around workhng age and according to the figures, this | :19:38. | :19:41. | |
year in February, in the DWP, the number of constituents in rdceipt of | :19:42. | :19:45. | |
employment support allowancd, personal independence payment and | :19:46. | :19:51. | |
incapacity benefits stands `t nearly 6000. Across London figures are even | :19:52. | :19:52. | |
higher. My personal experience of stpporting | :19:53. | :20:04. | |
a disabled parent and the sheer number of disabled people who live | :20:05. | :20:07. | |
in my constituency is why I've brought this debate of the house | :20:08. | :20:10. | |
today. Some of the disabled people who live in my constituency live in | :20:11. | :20:14. | |
the top 4% of income to deprived wards in the country. The pressure | :20:15. | :20:21. | |
they are under is clear. It's been underlined heavily by the extra | :20:22. | :20:26. | |
costs commission, an independent report undertaken by the ch`rity | :20:27. | :20:31. | |
Scope. I'd like to put my thanks to them on record, they've helped a lot | :20:32. | :20:32. | |
with this debate. Subtitles will resume at 11pm for | :20:33. | :21:03. | |
Thursday in Parliament. | :21:04. | :21:07. |