0:00:06 > 0:00:13Hello, and welcome to Inside Out. I am Dianne Ochs Perry. Tonight, the
0:00:13 > 0:00:18shocking truth behind the anti-epileptic drug used by pregnant
0:00:18 > 0:00:22women in our region who were not warned about the damage it could do
0:00:22 > 0:00:28to their babies.Because I wasn't told about this medication, this is
0:00:28 > 0:00:31where my children do not have a normal life.
0:00:31 > 0:00:36The failure to provide special toilets for disabled people in the
0:00:36 > 0:00:40North West, as Zack Kerr and his family take their campaign to
0:00:40 > 0:00:44Downing street. To be degraded because you have got
0:00:44 > 0:00:48a disability and you cannot access facilities everybody else has, it is
0:00:48 > 0:00:53not something -- anything fancy you are asking for, is just basic.
0:00:53 > 0:01:00And as part of the BBC's Supermovers campaign, Mike Sweeney revisits the
0:01:00 > 0:01:08world-famous Lads Club.We didn't really call it exercise then, it was
0:01:08 > 0:01:19really playing out with your mates.
0:01:19 > 0:01:27The drug sodium valproate is widely used as an effective for epilepsy,
0:01:27 > 0:01:33but for pregnant women it can cause serious side effects. It passed,
0:01:33 > 0:01:37many mothers took it completely unaware of the serious mental and
0:01:37 > 0:01:44physical damage it was doing to their unborn children. In this
0:01:44 > 0:01:46investigation, Emma Baum reveals how the authorities were completely
0:01:46 > 0:01:50aware of the danger this drug presented, but deliberately chose
0:01:50 > 0:01:54not to inform pregnant patients. -- Emma Baum.
0:01:54 > 0:02:01Janet and her son spend a lot of time walking next to the estuary at
0:02:01 > 0:02:08home in Preston. The sound of the birds calms down Philip's anxiety
0:02:08 > 0:02:16disorder.I was diagnosed with epilepsy, and it is hard for me, it
0:02:16 > 0:02:28is hard to... Yes, it is hard for me to describe the symptoms, but it is
0:02:28 > 0:02:33really, really difficult. When Janet was pregnant with Philip,
0:02:33 > 0:02:40she was described sodium valproate. She has epilepsy, and the pills were
0:02:40 > 0:02:44meant to control the seizures. But the powerful chemicals which
0:02:44 > 0:02:49protected her health damaged her son's. Both of Janet's sons have
0:02:49 > 0:02:55struggled with neurological problems and disabilities since birth. They
0:02:55 > 0:03:01are completely dependent on ma'am.I am 25 now, and the symptoms are, I
0:03:01 > 0:03:11cannot concentrate... When I go outside, my social interaction is
0:03:11 > 0:03:26zero. And I am very apprehensive with going anywhere, really.
0:03:26 > 0:03:31Like Philip, around 20,000 children in the UK and thousands more around
0:03:31 > 0:03:41the world are believed to have fatal valproate syndrome.
0:03:41 > 0:03:47We know from our research that people -- children who are exposed
0:03:47 > 0:03:52to sodium valproate, they can be affected physically, they can be
0:03:52 > 0:03:55affected mentally, and psychologically.
0:03:55 > 0:04:00Since sodium valproate was launched under various brand names in the
0:04:00 > 0:04:041960s, it is estimated that tens of thousands of pregnant women around
0:04:04 > 0:04:08the world have taken it. Many, like Janet and her friend Emma, said they
0:04:08 > 0:04:14were not made aware of the risks. Nothing by my doctor. He didn't even
0:04:14 > 0:04:19tell me really to an effect that I had epilepsy to start with. When I
0:04:19 > 0:04:23got my first prescription, there were no warnings in the boxes at
0:04:23 > 0:04:28that point. We are talking 1983, 19 84. So there was nothing for me at
0:04:28 > 0:04:36all.My husband and I questioned the midwives, neurologists, and to just
0:04:36 > 0:04:38be told, take this medicine, it is the best to control your seizures.
0:04:38 > 0:04:43That is great to control the seizures.But the baby... After
0:04:43 > 0:04:48their children were born with disabilities, Janet and Emma set up
0:04:48 > 0:04:52a charity in 2013 that aims to ensure warnings are prominently
0:04:52 > 0:04:57displayed on the packaging of all sodium valproate drugs. Partly as a
0:04:57 > 0:05:03result of their campaign in 2016, the medicines and health care
0:05:03 > 0:05:07products regulatory agency recommended that warning labels be
0:05:07 > 0:05:11featured on all valproate containing medicines. GPs must only prescribed
0:05:11 > 0:05:16the drug to women of child-bearing age as a last option, after
0:05:16 > 0:05:20explaining all the risks. But why has it taken 50 years to get the
0:05:20 > 0:05:25warning out? In the UK, the Government regulates what
0:05:25 > 0:05:29information is provided to patients. And according to Emma and Janet, the
0:05:29 > 0:05:36Government knew about the dangers of the drug as far back as 1973. They
0:05:36 > 0:05:45discovered the evidence deep in the National Archives.A statement
0:05:45 > 0:05:49similar to that proposed by ICI could be included on all relevant
0:05:49 > 0:05:57data sheets but not on packaging inserts... So there would be -- so
0:05:57 > 0:06:02there would be no danger of the patients seeing it.You would have
0:06:02 > 0:06:09been warned. 20,000 affected. There would not be that today.
0:06:09 > 0:06:14Since the very start of its licensing in this country, there was
0:06:14 > 0:06:20a knowledge of risk. And yet, the decision taken to hide that risk
0:06:20 > 0:06:25from mothers, a totally sort of paternalistic approach that mothers
0:06:25 > 0:06:30might worry about it, well, of course mothers have a right to know.
0:06:30 > 0:06:33In a statement, the medicines and health care products regulatory
0:06:33 > 0:06:43agency said...
0:06:52 > 0:06:58Over the last year, almost 200 babies in the UK have been born with
0:06:58 > 0:07:02sodium valproate syndrome. Despite efforts to raise awareness, many
0:07:02 > 0:07:06pharmacists are still issuing the drug in generic packaging with no
0:07:06 > 0:07:10warnings. The fact that women are still not being made fully aware of
0:07:10 > 0:07:17the risk is particularly alarming. Because among the affected families,
0:07:17 > 0:07:21there is growing fear that fatal valproate syndrome is actually being
0:07:21 > 0:07:30passed on through the genes, from one generation to the next. -- fetal
0:07:30 > 0:07:35valproate syndrome. Three generations of the same
0:07:35 > 0:07:41family, here in Kirby. Fetal valproate syndrome has dominated the
0:07:41 > 0:07:46lights.It is because I took that medication, that is because -- that
0:07:46 > 0:07:50is why my kids do not have a normal life, and this struggle every day of
0:07:50 > 0:07:55their lives to fit in and do things. One of my kids couldn't cope, and
0:07:55 > 0:08:06try to hang themselves. Sue took the drug -- a drug
0:08:06 > 0:08:10throughout their pregnancies, and later found out it had left all of
0:08:10 > 0:08:13her children with mental disabilities. Now her daughters are
0:08:13 > 0:08:22worried that their children have inherited the syndrome too.She is
0:08:22 > 0:08:31in special needs school. My little boy's nine, he has got dyspraxia,
0:08:31 > 0:08:36learning difficulties, a bowel condition, sensory issues, money --
0:08:36 > 0:08:40memory problems. Until now, those suspicions have not
0:08:40 > 0:08:44been deemed credible. But we have obtained the results of a major
0:08:44 > 0:08:47scientific project in South Korea which actually supports the idea
0:08:47 > 0:08:56that the drug can harm successive generations. The experiment, carried
0:08:56 > 0:09:00out on mice, indicates that sodium valproate afflicts several
0:09:00 > 0:09:04generations with mental health problems. Findings are being
0:09:04 > 0:09:09carefully considered by the Government and have already
0:09:09 > 0:09:13triggered concern among experts on fetal valproate syndrome.That was
0:09:13 > 0:09:18the first evidence we had in any species. Before this paper came out,
0:09:18 > 0:09:23we had no evidence that it was going to be something that was an issue,
0:09:23 > 0:09:27and we were still learning about the longer term effects on the
0:09:27 > 0:09:30individual who had been exposed directly to the drug. This is
0:09:30 > 0:09:34something now that it's to be looked at as quickly as possible to give
0:09:34 > 0:09:36families reassurance.How extraordinarily distressing this
0:09:36 > 0:09:44must be for the families affected, the knowledge that this is now
0:09:44 > 0:09:46within the DNA of that family,
0:09:46 > 0:09:49potentially transferable from generation to generation.
0:09:49 > 0:09:55The transgenerational legacy of fetal valproate syndrome could
0:09:55 > 0:09:59potentially remain with families for centuries, leading for calls for the
0:09:59 > 0:10:04Government to fund a care package to help those affected.
0:10:04 > 0:10:08The care package is more important because of the transgenerational
0:10:08 > 0:10:12link now, the fact that our grandchildren could be affected,
0:10:12 > 0:10:15with neurodevelopment disorders, possible heart malformations. They
0:10:15 > 0:10:21need care and support. My grandkids have been affected by
0:10:21 > 0:10:26it. I have had my worry with my kids growing up, I have got my worry
0:10:26 > 0:10:34again with my grandkids. It is nothing -- it is so wrong. So many
0:10:34 > 0:10:41people's lives have been affected and ruined.
0:10:41 > 0:10:45If you are currently taking sodium valproate, please do consult with
0:10:45 > 0:10:53your doctor before making any changes to your prescription.
0:10:53 > 0:10:59Around a quarter of a million people in the UK need a special kind of
0:10:59 > 0:11:05accessible toilet. But there are not any end UK service stations. A
0:11:05 > 0:11:0822-year-old campaigner has taken this petition to Downing Street to
0:11:08 > 0:11:21dry to get accessible toilets installed in all service stations.
0:11:21 > 0:11:28Zack likes nothing better than going out to nature reserves. But he is no
0:11:28 > 0:11:35ordinary 22-year-old. He has a form of cerebral palsy which affects his
0:11:35 > 0:11:44speech and limbs, he uses a computer to communicate, and relies on his
0:11:44 > 0:11:48electric wheelchair. He is a passionate Manchester United
0:11:48 > 0:11:55supporter. He loves shopping. He is in constant and cannot use a normal
0:11:55 > 0:12:00toilet as he requires a clear to help. To use the bathroom safely and
0:12:00 > 0:12:09comfortably Zack needs special equipment such as a hoist. Tollitts
0:12:09 > 0:12:19with these special facilities are cold changing places.Many disabled
0:12:19 > 0:12:26people cannot self transferrin from the wheelchair onto a toilet.Zack
0:12:26 > 0:12:31has been campaigning for more changing places toilets on service
0:12:31 > 0:12:39stations.If I am unable to be changed I can get sore and this can
0:12:39 > 0:12:47lead to other health problems.This can mean that Zack and other people
0:12:47 > 0:12:51at this ability is our forced to change on a toilet floor.It is not
0:12:51 > 0:13:04right. It is heartbreaking. On the drive home, everyone is quiet, and
0:13:04 > 0:13:09he is sorry. Nobody wants to talk about it. It is humiliating for him.
0:13:09 > 0:13:15Sometimes when we are out we cannot go for long because of Zack leads
0:13:15 > 0:13:22the toilet and we have to go back. It can be frustrating. That is a
0:13:22 > 0:13:26private issue. He has been incredibly brave to raise that. This
0:13:26 > 0:13:32is something many people would not want to talk about it.Absolutely.
0:13:32 > 0:13:41Zack to go when he was younger. I wrote in my diary, what will happen?
0:13:41 > 0:14:00-- Zack was Bill when he was younger -- was Zack when he was younger.
0:14:00 > 0:14:10Zack is working to take his campaign to Downing Street. It is a long
0:14:10 > 0:14:22journey. He will film the services. The findings are shocking. There is
0:14:22 > 0:14:28not enough space to change on the toilet floor in the disabled toilet
0:14:28 > 0:14:36or the baby changing room. 26 miles south at another service station
0:14:36 > 0:14:42there still is not enough space to change Zack. The family also find
0:14:42 > 0:14:46litter on the floor and the emergency cord has been hung out of
0:14:46 > 0:14:51reach.By the time we arrived at the third service station it was
0:14:51 > 0:14:58becoming too much to cope with. It was distressing. It is not fair.We
0:14:58 > 0:15:06are at Stafford services. Zack is quite upset now and fed up. We have
0:15:06 > 0:15:11not found any fear suitable to get him changed. He is upset about the
0:15:11 > 0:15:17thought of going on the floor yet again.There were three large bins
0:15:17 > 0:15:21in one of the toilets and these had to be taken out of the room before
0:15:21 > 0:15:29the matter could be rolled out. I did not want to get out of the
0:15:29 > 0:15:33wheelchair and lie on the floor because that was so dirty.We
0:15:33 > 0:15:40thought of turning back at one point. We knew we had another couple
0:15:40 > 0:15:50of hours.
0:15:58 > 0:16:02At this service station Zack is finally getting changed nearly seven
0:16:02 > 0:16:10hours after they set off.But was a better experience. How do you feel
0:16:10 > 0:16:17about that?53 miles later at Warwick services, despite being
0:16:17 > 0:16:21listed online is having a changing place toilet the facility was
0:16:21 > 0:16:33nowhere to be found. The last stop. They have a changing faces facility
0:16:33 > 0:16:44that Zack is able to use.
0:16:46 > 0:16:49The family finally reach London after a long journey from
0:16:49 > 0:16:55Accrington. Only two service stations had the appropriate
0:16:55 > 0:17:01changing facility that Zack needed. The law is confusing. It is not
0:17:01 > 0:17:05compulsory to install these toilets but the 2010 equality act says
0:17:05 > 0:17:09businesses have a duty to make reasonable adjustments so that those
0:17:09 > 0:17:13with the civilities can access toilets but the definition of what
0:17:13 > 0:17:16is reasonable has been messed up to campaigners like Zack to dry and
0:17:16 > 0:17:27enforce change. -- what is reasonable has been left up to
0:17:27 > 0:17:33campaigners. The blue spot show the areas where there are fewer than
0:17:33 > 0:17:42ten. Even here, the hoist was not working.This has to be about human
0:17:42 > 0:17:49dignity. Some of the stories I have heard from Zack today have been
0:17:49 > 0:17:53truly shocking.The Government is looking into whether current
0:17:53 > 0:17:57regulations meet the needs of disabled people with a report to
0:17:57 > 0:18:04come out later this year.We want to make sure so that they recognise why
0:18:04 > 0:18:14this is important, they should treat all their customers equally.
0:18:14 > 0:18:21Today is the big day for Zack, his family, and their supporters.That
0:18:21 > 0:18:26is surreal being here, handing in the petition.I am hopeful that my
0:18:26 > 0:18:34petition will be taken seriously. The provision and the north of the
0:18:34 > 0:18:42country where we live is not good. For thousands of people in the UK
0:18:42 > 0:18:47the situation at motorway service stations is degrading. Something
0:18:47 > 0:18:52needs to be done. Congratulations to Zack for leading the national
0:18:52 > 0:18:58campaign.We put Zack's findings to the three largest motorway service
0:18:58 > 0:19:12providers. Any statements they said. We currently have six facilities and
0:19:12 > 0:19:19we expect to have facilities at three other sites. Today it costs
0:19:19 > 0:19:26between £50,000 and £200,000 each to install. Welcome break has seven
0:19:26 > 0:19:33facilities and they hope to have a facility within the next six months.
0:19:33 > 0:19:41The website listing for Warwick South services as a historical error
0:19:41 > 0:19:44and has been removed and they apologise for the experience of the
0:19:44 > 0:19:51family. Good chef is currently trialling their first changing place
0:19:51 > 0:19:57toilet, this facility cost £38,000 to install. They say that usage to
0:19:57 > 0:20:01date has been low and they are looking for a more cost-effective
0:20:01 > 0:20:06way to meet this need. They apologise to the family for the
0:20:06 > 0:20:11experience at Stafford and they will ensure that more regular checks of
0:20:11 > 0:20:17facilities are made. Zack's family have found their own
0:20:17 > 0:20:34way of coping when there are no facilities.We carry a mat. It is
0:20:34 > 0:20:38not dignified.Despite all this Zack is determined to continue
0:20:38 > 0:20:46campaigning.The total number is just over 117,000. My next focus
0:20:46 > 0:20:54will be on hospitals because very few have changing place facilities.
0:20:54 > 0:20:58But first Zack is looking forward to getting a place of his own.He is
0:20:58 > 0:21:04looking forward to that. He wants to be out and about. But this is
0:21:04 > 0:21:12restricting people from having a complete life.Nobody chooses to
0:21:12 > 0:21:17have a disability. It can happen to anyone of us at any time of our
0:21:17 > 0:21:22life. To be degraded because you have got a disability and you cannot
0:21:22 > 0:21:27access facilities that everybody else needs is just basic. It is not
0:21:27 > 0:21:35anything fancy, it is just basic facilities.
0:21:35 > 0:21:38Most of us know that if we don't move around enough chances are we
0:21:38 > 0:21:43will put on weight and the bad news is our seventh league lifestyles are
0:21:43 > 0:21:48affecting the way we think and feel. Very cute of us manage the one hour
0:21:48 > 0:21:53per day of physical activity that the Government recommends. Getting
0:21:53 > 0:21:58active does not have too cost the earth and it can change your life.
0:21:58 > 0:22:04Mike Sweeney still plays football twice a week at the age of 70. We
0:22:04 > 0:22:10asked him to let us then on his secrets for a healthy lifestyle.
0:22:10 > 0:22:14Long before it was made famous by the Smiths, Salford Lads Club was a
0:22:14 > 0:22:22home for home for Albert Finney, Graham Nash, and myself, DJ Mike
0:22:22 > 0:22:32Sweeney. This is where my love of exercise
0:22:32 > 0:22:36started, here at Salford Lads Club. We did not call it exercise. It was
0:22:36 > 0:22:41just playing with your friends. The club has been here since Edwardian
0:22:41 > 0:22:46times and is still used by 150 young people every week. It is not an
0:22:46 > 0:22:51exaggeration to say that this place changed my life.
0:22:51 > 0:22:58Here I am, summer 1963, nearly 16 years of age, my Beatles haircut
0:22:58 > 0:23:09just starting. I have such great memories of this club trip. Out in
0:23:09 > 0:23:12the Treasury, swimming, playing football, messing about with my
0:23:12 > 0:23:17friends. And the club still runs its annual camp to this day. You have
0:23:17 > 0:23:25seen the oxygen gymnasium. I spent most of my time on this football
0:23:25 > 0:23:42pitch. Basketball. Snigger. Table tennis. All for £1 per session.
0:23:47 > 0:23:56-- football. Snooker. It is an ethos that is alive and
0:23:56 > 0:24:07well. With luck they will let me join in. The first thing you notice
0:24:07 > 0:24:11is all these flags, over 20 of them, they illustrate the nationalities of
0:24:11 > 0:24:17the kids that use this race. What a welcoming sight. The slogan of the
0:24:17 > 0:24:23club is, somewhere to go, someone to talk to, they are open every day
0:24:23 > 0:24:30except bank holidays. That costs 50p per session. They can come in at
0:24:30 > 0:24:34four o'clock at night and stay until ten o'clock at night if they are a
0:24:34 > 0:24:38senior member, half past eight they are a junior member. They can do as
0:24:38 > 0:24:43much as little as what they want to do.
0:24:43 > 0:24:48We have seen the benefits.What is your observation? I agree. For young
0:24:48 > 0:24:53people, taking part in sport authors are collectively is important to
0:24:53 > 0:24:57develop self-confidence, self esteem, self worth, if they get into
0:24:57 > 0:25:02that habit at an early age they are set up for life in taking part in a
0:25:02 > 0:25:05healthy lifestyle, taking part in sport.
0:25:05 > 0:25:09It is abroad and are young members are safe at all times, we provide
0:25:09 > 0:25:13pick-up services, click young people, bring them back afterwards
0:25:13 > 0:25:17the parents and carers are happy that their children are being looked
0:25:17 > 0:25:24after safely.The club also provides a hot nutritious meal for just £1.
0:25:24 > 0:25:32It is a fantastic place, somewhere really special for children to come.
0:25:32 > 0:25:37You can come here after school. You can release wards of energy here and
0:25:37 > 0:25:45run around. In school you cannot do as much exercising. You only get one
0:25:45 > 0:25:51hour.What benefits do you think you get? My concentration has got better
0:25:51 > 0:25:57in school. When I first went to school I used to the gym a lot and
0:25:57 > 0:26:00could not concentrate on doing stuff and would always disturb the class
0:26:00 > 0:26:05but know I can hear and I get to release some energy so when I get
0:26:05 > 0:26:11home I get a good night sleep and I can concentrate on school better.We
0:26:11 > 0:26:14are doing different activities, things that any child can do.There
0:26:14 > 0:26:18are so many different activities, some I have never heard of.
0:26:18 > 0:26:25What is going on here? We are taking what we did in there with the
0:26:25 > 0:26:36activities and dry to put it into hand and eye coordination.You have
0:26:36 > 0:26:42been exercising for one hour.That is all about trying new things. They
0:26:42 > 0:26:48can have fun. They can play. You might not be the best. You might not
0:26:48 > 0:26:51enjoy the competition site. You might just want to come with your
0:26:51 > 0:26:55friends and develop your social skills. We have a lot of people who
0:26:55 > 0:26:59suffer from social anxiety or are under pressure at home and they come
0:26:59 > 0:27:03here and are able to mix with a wide group of people from all over the
0:27:03 > 0:27:06world and just have fun. It gives you increase knowledge about the
0:27:06 > 0:27:11meet different people act stop a lot of The Times, within school sport or
0:27:11 > 0:27:15club sport, if you are not good enough, you do not play. Here they
0:27:15 > 0:27:23can take part in anything. They can just play and have fun and that is
0:27:23 > 0:27:28all that matters.I have come in my kit because I am itching to get
0:27:28 > 0:27:31involved. If you can set something up that would be brilliant.We are
0:27:31 > 0:27:37going to set up some admin ten. Smashing. Badminton. I have not done
0:27:37 > 0:27:59this for years. Brilliant. Go on. Really enjoyed that. I really did
0:27:59 > 0:28:07enjoy it. Wouldn't it be great if in 60 years these kids are still doing
0:28:07 > 0:28:12stuff at 70 years of age? Like meet the Genesis was Salford Lads Club
0:28:12 > 0:28:18all those years ago and it could be that this lovely place will be for
0:28:18 > 0:28:23these kids what starts them off on a lifetime of keeping fit.
0:28:23 > 0:28:28And you can find lots of fun, free and easy to use activities to get
0:28:28 > 0:28:35your family moving. That is all for this week. We are back next Monday.
0:28:35 > 0:28:42Goodbye. Next week, the amazing World War II
0:28:42 > 0:28:45diary that is finally being published after it had to be hidden
0:28:45 > 0:28:53in a grave.He took the diary because it was getting too dangerous
0:28:53 > 0:29:02and buried it in one of the graves.