28/01/2013

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:00:02. > :00:05.$:/STARTFEED. Hello from Frome in Somerset, where

:00:05. > :00:09.we are uncovering new evidence about a vaccine given to nearly a

:00:09. > :00:13.million children. This boy suffers from narcolepsy

:00:13. > :00:16.which causes him to suddenly fall asleep without warning. Tonight, we

:00:16. > :00:25.reveal new evidence that links his condition with a vaccine he was

:00:25. > :00:30.given against swine flu. The risk is so much increased it is

:00:30. > :00:33.very unlikely that this is a biased result. It is likely to be real.

:00:33. > :00:36.Also tonight, will young families in larger council properties be

:00:36. > :00:43.kicked out of their homes while older tenants are allowed to stay

:00:43. > :00:47.put in theirs? I was quite shocked. I don't think

:00:47. > :00:54.it is a right at all. Whoever came up with the idea has not really

:00:54. > :00:57.thought it through. And...

:00:57. > :01:07.The traditional Irish song with distinctly West Country roots.

:01:07. > :01:07.

:01:07. > :01:10.I'm Alastair McKee, and this is Just over a year ago we met a

:01:10. > :01:15.family from here in Frome with some serious concerns about a vaccine

:01:15. > :01:20.that was given to nearly a million children. Pandemrix was designed to

:01:20. > :01:24.protect against swine flu. But now Inside Out West has new evidence

:01:24. > :01:32.that links it with a sleep disorder called narcolepsy. Here's our

:01:32. > :01:38.Caroline Hadfield is about to go on a long journey from her home on

:01:38. > :01:41.Frome to get justice for her son. Her seven-year-old son, Josh, has a

:01:41. > :01:44.very rare condition that means he can't regulate his sleep patterns,

:01:44. > :01:52.which she believes was caused by his vaccination against swine flu

:01:52. > :01:55.in 2010. A year later he was finally

:01:55. > :01:58.diagnosed with narcolepsy, which makes him sleep most of the time,

:01:58. > :02:08.and catoplexy, a condition that makes him collapse when he gets

:02:08. > :02:09.

:02:09. > :02:14.You see other children who can laugh and enjoy things. Yes, Josh

:02:14. > :02:21.laughs and enjoys things, but his reaction means he goes unconscious.

:02:21. > :02:24.The swine flu vaccine that Josh took, is alled Pandemrix. -- is

:02:24. > :02:27.called an Pandemrix. It is made by GlaxoSmithKline, one of the world's

:02:27. > :02:30.largest drugs companies. They have always denied any link. But tonight

:02:30. > :02:34.we can reveal new evidence which has made them think again. And one

:02:34. > :02:39.of the country's leading experts in vaccination also speaks out. If you

:02:39. > :02:43.look at the figures, from what I can see, the risk is so much

:02:43. > :02:53.increased that it is very unlikely this is a biased result. It is

:02:53. > :02:54.

:02:54. > :02:57.likely to be below. It was the lethal threat of the

:02:57. > :03:02.swine flu pandemic which made Caroline goal for the vaccination

:03:02. > :03:08.offered to all under fives. Now there is growing and that --

:03:08. > :03:12.evidence internationally that some youngsters like Josh developed both

:03:12. > :03:17.narcolepsy and catoplexy within weeks. For instance, in Finland,

:03:18. > :03:26.where I visited this leading sleep specialist a year ago, he told me

:03:27. > :03:31.the risk of narcolepsy was higher. When I showed the results to GSK

:03:31. > :03:35.they denied any link. There is currently no evidence to suggest a

:03:35. > :03:38.link between Pandemrix and narcolepsy. We're working very hard

:03:38. > :03:46.to with the regulator Ray authorities to understand what is

:03:46. > :03:49.happening. -- regulatory. And after we first featured Josh's

:03:49. > :03:55.story, his mother was inundated with calls from other families.

:03:55. > :04:01.Hearing their stories brings her son's condition home. They were

:04:01. > :04:10.shocked to see their child's story being told by someone else. They

:04:11. > :04:15.were relieved there is someone they can go on talk to. Sorry...

:04:15. > :04:18.And we have now obtained evidence that, since our documentary, more

:04:18. > :04:21.children are being reported to to the British authorities with a

:04:21. > :04:25.suspected reaction to the bank scene.

:04:25. > :04:29.At the time of our broadcast a year ago, there were seven document

:04:29. > :04:34.cases of narcolepsy brought into authorities, but since then the

:04:34. > :04:39.number has more than doubled to 15. Last April, new evidence emerged

:04:39. > :04:44.from Ireland about a link with that the vaccine. An increased risk of

:04:44. > :04:48.the sleeping disorder narcolepsy in people aged between five and 19

:04:48. > :04:51.years old he received the Pandemrix swine flu vaccine. Following this

:04:51. > :04:57.report, the Health Protection Agency in England commissioned a

:04:57. > :05:01.study to see if children here were also affected by the vaccine from

:05:01. > :05:07.GlaxoSmithKline. Caroline is anxious about answers it may bring.

:05:07. > :05:11.In the meantime, she has decided to go to Ireland to find out more.

:05:11. > :05:16.She has come to meet her campaigning counterpart in Dublin,

:05:16. > :05:20.who is also convinced the Pandemrix and vaccine caused her son, Alex,

:05:20. > :05:25.develop narcolepsy. I still remember him having the

:05:25. > :05:29.test and it being confirmed, and that horrible sinking feeling. Even

:05:29. > :05:34.though we knew at that stage what it was, it was still like someone

:05:34. > :05:36.had hit us. Mairead Lawless has met the Irish

:05:36. > :05:40.health minister, who is now considering help.

:05:40. > :05:43.A we got a promise from the Minister for Health here that a

:05:43. > :05:48.support package proposal would be put to Government prior to the

:05:48. > :05:54.summer, but that has not happened. We are now putting pressure on them

:05:54. > :06:00.to do that. Unfortunately, our Government is on the same lines,

:06:00. > :06:05.because Glaxo's is -- GSK is denying it.

:06:05. > :06:08.So, as Caroline waits for the results of the study on English

:06:08. > :06:11.children like Josh, she decides to come to an international conference

:06:11. > :06:17.in Manchester. It is an opportunity to meet other

:06:17. > :06:21.families affected and talk to experts who are taking blood from

:06:21. > :06:26.patients in the search for better treatment.

:06:26. > :06:29.My hope is that we will find a blood test for narcolepsy and in 10

:06:29. > :06:34.or 20 years we will be able to prevent narcolepsy and treat the

:06:34. > :06:40.people who have it better. I saw your documentary it this time last

:06:40. > :06:43.year. That was a big help to us, as parents, with a child with

:06:43. > :06:49.narcolepsy. It does take something pretty major

:06:49. > :06:54.for people to realise they are not on their own. I a couple of weeks

:06:54. > :06:57.ago, I finally got hold of the Health Protection Agency's study on

:06:57. > :07:02.English children. This is the report Caroline has been waiting

:07:02. > :07:05.for for over idea of, of which she hopes will prove that Pandemrix

:07:05. > :07:12.caused her son's devastating condition.

:07:12. > :07:22.The while the full paper is still being considered for publication,

:07:22. > :07:25.

:07:25. > :07:30.the in Finland, Sweden and Ireland. They found a tenfold increased risk

:07:30. > :07:36.in the condition within six months of having the jab, which suggests a

:07:36. > :07:39.causal association consistent with reports from Finland and Sweden.

:07:39. > :07:42.GSK saved the road development there was no data suggesting a

:07:42. > :07:51.potential for an increased risk of narcolepsy among those facts are

:07:51. > :07:55.needed. -- vaccinated. I had brought Caroline to hear the

:07:55. > :07:58.results from one of the country's leading and vaccine experts,

:07:58. > :08:04.Professor Adam Finn who carried out one of the original trials of

:08:04. > :08:07.Pandemrix on children. They found there was somewhere

:08:07. > :08:14.between 10 and 16 times more likely to have had Pandemrix than other

:08:14. > :08:18.children. That confirms studies done in other countries. These

:08:18. > :08:23.researchers have put a number on it and said in their estimation the

:08:23. > :08:26.disc was something like one in 52,000. That is a lot more positive

:08:26. > :08:32.than other studies, because at least they are saying there is an

:08:32. > :08:37.increase. Absolutely. I suppose the only silver lining to this cloud is

:08:37. > :08:41.that it will perhaps mean we understand better, firstly how

:08:41. > :08:46.vaccines work and they can cause side-effects, and also, what is the

:08:46. > :08:51.cause of narcolepsy and what potentially is the cure?

:08:51. > :08:58.High, it was a very interesting meeting. That is the first report I

:08:58. > :09:03.have seen that it shows there is at 10-16 fold increase in cases since

:09:03. > :09:07.the vaccine was given, so that is a huge leap forward, and I cannot see

:09:07. > :09:12.how the Government can turn around and say there is no link, because

:09:12. > :09:15.obviously there is. That European Medicines Agency have now told me

:09:15. > :09:19.there is an association between Pandemrix and narcolepsy in

:09:19. > :09:25.children. It has ordered manufacturer GSK to commit to a

:09:25. > :09:29.complex research programme to look at the root causes. GSK say they

:09:29. > :09:34.are working hard to better understand the researched emerging

:09:34. > :09:38.from a select number of countries. A we sent the new study on English

:09:38. > :09:43.children to GSK. This time, they did not want to do an interview,

:09:43. > :09:53.but there are no longer denying there is evidence suggesting there

:09:53. > :10:12.

:10:12. > :10:17.could be a causal link between The Department of Health refused to

:10:17. > :10:27.comment, referring us to a statement by the Medicines and

:10:27. > :10:39.

:10:39. > :10:44.Health Care regulatory Agency. It Josh and other children have had

:10:44. > :10:47.their applications for vaccines damage payment turned down. The DWP,

:10:47. > :10:50.who are responsible for this, has told me there is currently

:10:51. > :10:56.insufficient medical evidence to show alike. That is something

:10:56. > :10:59.Carolina and the experts I have spoken to disagree with.

:10:59. > :11:08.These children are now affected for the rest of their lives. Their

:11:08. > :11:11.whole lives have been changed, and they need someone to help them.

:11:11. > :11:14.Do coming up... Goal I'll be here in sunshine or in

:11:14. > :11:24.shadow. At a little piece of Porter's Head

:11:24. > :11:26.

:11:26. > :11:29.which will be forever Ireland. -- It has become known as the bedroom

:11:29. > :11:32.tax and could leave nearly 700,000 of the country's poorest households

:11:32. > :11:39.with a very painful decision - either move out of your home or

:11:39. > :11:42.face a hefty cut to your housing benefit. But this new welfare

:11:42. > :11:51.change will not affect pensioners, leaving some local authorities and

:11:51. > :11:56.campaigners asking if the new rules In April this year, the housing

:11:56. > :12:02.benefit rules are changing. That means some people will receive less

:12:02. > :12:05.money. Who ever came up with the idea has not really thought it

:12:05. > :12:08.through. There are concerns that it is going

:12:08. > :12:13.to cause conflict between young and old. While some lose money,

:12:14. > :12:17.pensioners' housing benefit remains the same.

:12:17. > :12:19.We certainly see a lot of people getting angry as they start to

:12:20. > :12:24.realise the extent to which the older generation have pushed their

:12:24. > :12:30.obligations onto the young. So, what does this welfare reform

:12:30. > :12:40.really mean for those living in the West's social housing?

:12:40. > :12:48.

:12:48. > :12:53.Seven-year-old Alfie loves his bedroom. He loves to read just

:12:53. > :12:58.before bedtime. Due to changes in the benefits system this year,

:12:58. > :13:08.Alfie might need to soon share his bedroom with his 14-year-old

:13:08. > :13:09.

:13:09. > :13:14.brother Matthew and Matthew is a big football fan. With their

:13:14. > :13:17.different and quite noisy interests, sharing a bed from might be a bit

:13:17. > :13:24.of a challenge. But there is another reason it might be

:13:24. > :13:31.different. My son Matthew has autism, so he needs his own space.

:13:31. > :13:37.He is 14 and he is going through puberty. Under the new housing

:13:37. > :13:41.benefit changes, Lawro what now only get enough money to rent a

:13:41. > :13:46.house with one bedroom for her two sons. That is because children of

:13:46. > :13:52.the same sex who are under the age of 16 are expected to share a

:13:52. > :13:57.bedroom. Nor have to pay the extra rent herself or move to a smaller

:13:57. > :14:07.home. But some local authorities are concerned they might not be

:14:07. > :14:10.

:14:10. > :14:20.enough smaller properties and some people could end up homeless.

:14:20. > :14:30.not build houses. However there is also the situation of their not

:14:30. > :14:32.

:14:32. > :14:38.being enough money. Many young families are in work, but cannot

:14:38. > :14:45.pay their bills with the salaries they receive. We have an imbalance

:14:45. > :14:49.and it will stay with us for some period of time. The haves will get

:14:49. > :14:54.richer and the have-nots will get poorer. In the end that will lead

:14:54. > :15:04.to a social breakdown. Rick is concerned that young and old are

:15:04. > :15:08.been treated differently by the welfare changes and unlike younger

:15:08. > :15:12.people, pensioners will not have their benefits affected and will

:15:12. > :15:18.not have to move out of their properties. I don't think it is

:15:18. > :15:22.right. Whoever came up with the idea has not thought it through.

:15:22. > :15:27.Christine and Bill Rendell used to live in a three-bedroom house and

:15:27. > :15:31.are fully entitled to claim the benefit to stay there. This is an

:15:31. > :15:35.would dog Max coming to greet you. The a have decided to do their bit

:15:35. > :15:42.to help younger people who might find themselves without a house in

:15:42. > :15:50.April. For them, it meant a move after 36 years in the family home.

:15:50. > :15:56.It had to get rid of staff, but it had to go. Once you get in the

:15:56. > :16:04.property, you think, yes, we are here. We are really over the moon

:16:04. > :16:10.and we are happy to think we have done it. If some people thought a

:16:10. > :16:15.little bit more about somebody else coming on behind them who may need

:16:15. > :16:19.help, you know, they have had their chance. They are living in a

:16:19. > :16:26.property they could give up to the young, so perhaps there should be

:16:27. > :16:34.penalised. I can say that now because I had moved out! Sir, Brian

:16:34. > :16:39.and Christine think older people should consider downsizing, but are

:16:39. > :16:47.pensioners who are claiming money for spare rooms causing anger among

:16:47. > :16:53.its those whose benefits have been cut? Certainly the younger

:16:53. > :16:59.generation are angry about the older generation portion of their

:16:59. > :17:09.responsibilities on to them. Deep Intergenerational Foundation are

:17:09. > :17:10.

:17:10. > :17:16.researching how the older generation are being treated

:17:16. > :17:25.differently. There are a lot of all the pensioners who are comfortably

:17:25. > :17:34.off and are treated be friendly. Ros Altmann it is the director of

:17:34. > :17:43.Saga who provide health care and insurance for people over 50. She

:17:43. > :17:47.thinks the same rules should apply to everyone. That would be a more

:17:47. > :17:53.reasonable way of judging how the benefits system works than

:17:53. > :17:58.arbitrarily saying, this age group can only have a subsidy for one-

:17:58. > :18:04.bedroom, a different age group can have subsidy for more bedrooms. It

:18:04. > :18:14.is not the way the housing market works, it is not the way societies

:18:14. > :18:15.

:18:15. > :18:20.work and it is not how families work. Shosh Copley owns her own

:18:20. > :18:30.four-bedroom house. She signed up to a scheme to share it with a

:18:30. > :18:36.

:18:36. > :18:38.younger person who is looking for affordable housing. Her younger

:18:38. > :18:46.house mate is Millie. The application process that brought

:18:46. > :18:51.them together is a bit like joining a dating agency. It has held Shosh

:18:51. > :19:01.Copley out of a difficult situation later air in life. My husband died

:19:01. > :19:02.

:19:02. > :19:07.a few years ago. There anything I tend to stick to is the house.

:19:07. > :19:14.were young, I think I would want to make my own way, I would not want

:19:14. > :19:19.to look with resentment at people who have made it. People need to

:19:19. > :19:23.have personal responsibility. Yes, it is probably wrong but I am

:19:23. > :19:29.living in a house was so many bedrooms, but I hope I have changed

:19:29. > :19:32.that. Voluntary downsizing might be a way

:19:32. > :19:38.of helping younger people who will struggle when the housing benefit

:19:38. > :19:45.is reduced, but Laura, Matthew and Alfie are adamant they are staying

:19:45. > :19:49.put in their home, even if they have to find another �60 a month.

:19:50. > :19:55.It would be easier to live here than downsize to a two bedroom.

:19:55. > :20:00.When we moved here, Alfie was seven months old. He has got all of his

:20:00. > :20:10.friends here and I don't want to take him out of school. I probably

:20:10. > :20:10.

:20:10. > :20:14.will remain living here and pay the council the extra money.

:20:14. > :20:20.Now, of Danny Boy is one of those instantly recognisable songs that

:20:20. > :20:24.everyone knows at least some of the words to. In our final film tonight,

:20:24. > :20:34.while the world celebrates the centenary of this famously Irish

:20:34. > :20:41.song, I had been tracing its less well-known West Country brutes. --

:20:41. > :20:45.roots. In a quiet corner of Porter's Head stands a statue

:20:45. > :20:55.called The Lady Sings. The words of her song are craft around the

:20:55. > :21:03.

:21:03. > :21:08.plinth. I will be here in sunshine The words are from Danny Boy, a

:21:08. > :21:12.song which has been recorded by everyone from Willie Nelson to

:21:12. > :21:18.Gracie Fields. It is famous all over the world. What is less known

:21:18. > :21:25.is that the words were written here in Porter's Head by Fred Weatherly.

:21:25. > :21:31.Why should we be interested in Fred Weatherly? Because he wrote 3,000

:21:31. > :21:38.songs, as many songs as Rabbie Burns, and yet he is unknown

:21:38. > :21:45.outside the West Country. Those 3,000 songs include Bravo Bristol

:21:45. > :21:54.and Roses of Picardy. This was built to commemorate Danny Boy.

:21:54. > :22:04.2013 is that 100 eight macro anniversary of the song. So, he was

:22:04. > :22:08.

:22:08. > :22:18.Danny Boy. -- 2013 it is the 100th anniversary of the song. This is

:22:18. > :22:20.

:22:20. > :22:26.the house where Fred was born. His nephew reveals some family secrets.

:22:26. > :22:30.He was a barrister and his songwriting was a hobby. There are

:22:30. > :22:37.stories of him being on his way to court cases writing songs on the

:22:37. > :22:42.train. Danny Boy it is this famous Irish traditional song. It is sung

:22:42. > :22:49.to a traditional tune. However, the song itself was written by a man

:22:49. > :22:53.very much rooted in the West Country. Had he been to Ireland?

:22:53. > :22:58.Was the a fan of Ireland? He had not been to Ireland as far as I

:22:58. > :23:04.know and he didn't have any strong feelings one way or the other over

:23:04. > :23:10.what was happening in Ireland. he captured the spirit of Ireland

:23:10. > :23:15.quite beautifully. How did you come to write those words? That is a bit

:23:15. > :23:22.of a mystery. Nobody really knows. It is just that he had a set of

:23:22. > :23:32.words that he had written in 1910 for another song. His sister-in-law

:23:32. > :23:33.

:23:33. > :23:40.from America had introduced him to be -- to the Londonderry Air and he

:23:41. > :23:49.saw that the words would fit back tune nicely and then in 1913 it was

:23:49. > :23:54.first published. So this year being the Centennial anniversary, how are

:23:54. > :23:59.you marking the anniversary? We are commissioning a new version of

:24:00. > :24:07.Danny Boy. Bristol band Carmina rose to the challenge of making

:24:07. > :24:13.this new recording, appropriately enough in Ireland. How did you go

:24:13. > :24:20.about creating a new interpretation of this song? Danny Boy was an

:24:20. > :24:29.Edwardian parlour song in a way. I see it as a traditional Irish tune.

:24:29. > :24:33.One of the hallmarks is the simplification of the courts. -- of

:24:33. > :24:43.the courts. Do you think Fred Weatherly would approve of your

:24:43. > :24:45.

:24:45. > :24:52.version? It would be nice if he did. We have bought some jazz to

:24:52. > :25:02.Whitbread the saxophone and piano. I would like to pin back Fred would

:25:02. > :25:02.

:25:02. > :25:12.appreciate that blending. -- I would like to think. Over the years,

:25:12. > :25:16.

:25:16. > :25:25.the song has been used by Unionists and loyalists in Ireland. In his

:25:26. > :25:32.autobiography he says that Danny Boy it is sung by the Sinn Fein and

:25:32. > :25:40.Ulster men alike. Obviously he knew the song had meaning? Yes, he

:25:40. > :25:45.recognised it was being sung across the world. Fred made he's position

:25:45. > :25:55.clear when he said that there is nothing of the rebel song in it.

:25:55. > :25:56.

:25:56. > :26:06.For years there has been speculation of a Lost Bird first. -

:26:06. > :26:11.

:26:11. > :26:21.Mark -- eight lost a third of verse. Here he has written in longhand the

:26:21. > :26:23.

:26:23. > :26:32.whole of the second verse and states in the letter it is the last

:26:32. > :26:37.one. Fred live most of his life in the West Country, including

:26:37. > :26:47.Grosvenor Lodge in Combe Down, the house where he brickworks to Danny

:26:47. > :26:51.

:26:51. > :26:57.Boy. -- where he wrote the words to Danny Boy. He had a son but died

:26:57. > :27:03.and there is speculation that the song is dedicated to him. However,

:27:03. > :27:08.he wrote the first verse of Danny Boy seven months before his son

:27:08. > :27:16.died and made no connection between the song and any personal grief he

:27:17. > :27:21.may have felt at the time. So, the mystery continues. And perhaps it

:27:21. > :27:30.is this mystery which helps explain the song's enduring appeal. Whether

:27:30. > :27:40.it is sunk as an anthem or at a funeral. It has these strong themes

:27:40. > :27:44.

:27:44. > :27:54.of mortality and laugh, which I think everyone can relate to.

:27:54. > :27:58.

:27:58. > :28:02.a lovely song and a lovely tune. Fred was buried in Bath and he will

:28:02. > :28:12.always be remembered as the writer of one of the world's favourite

:28:12. > :28:19.

:28:19. > :28:24.That new version of Danny Boy by Carmina is due to be released on St

:28:24. > :28:29.Patrick's Day which is March 17th. That is it for tonight. You can

:28:29. > :28:39.keep in touch with what we are up to on Sir Peter Fahy. You can also

:28:39. > :28:40.

:28:40. > :28:47.e-mail us. -- on Twitter. Next week, we investigate concerns about how

:28:47. > :28:50.the children's air ambulance is spending its money. If the