0:00:12 > 0:00:16Hello, I'm Sean Fletcher, and welcome to a special edition
0:00:16 > 0:00:19of Inside Out London ? in which we investigate
0:00:19 > 0:00:22the shocking truth behind the drug sodium valproate.
0:00:22 > 0:00:24This medication is widely used as an effective
0:00:24 > 0:00:26treatment for epilepsy.
0:00:26 > 0:00:30But for pregnant women it can have dangerous side effects ?
0:00:30 > 0:00:33and in the past many mothers have taken it while unaware of the mental
0:00:33 > 0:00:37and physical damage it was doing to their unborn children.
0:00:37 > 0:00:40In this programme, we'll be revealing how the authorities
0:00:40 > 0:00:44were fully aware of the dangers the drug presented,
0:00:44 > 0:00:48but deliberately chose not to inform pregnant patients.
0:00:48 > 0:00:51And we present new evidence that suggests that ? tragically -
0:00:51 > 0:00:54the drug's harmful effects can be transmitted down through generations
0:00:54 > 0:00:59of the same family.
0:01:04 > 0:01:14Deformed, disabled, damaged.
0:01:14 > 0:01:19Thousands of babies around the world, genetically harmed
0:01:19 > 0:01:21in the womb by one drug.
0:01:21 > 0:01:23She can't go to the toilet, she can't walk.
0:01:23 > 0:01:24She can't talk.
0:01:24 > 0:01:27We bring to light the records that show the Government knew
0:01:27 > 0:01:29the drug causes birth defects yet chose to hide the truth
0:01:29 > 0:01:30from expectant mothers.
0:01:30 > 0:01:33My mum should not have had to have the children
0:01:33 > 0:01:34that were affected,
0:01:34 > 0:01:36if she knew that we were going to have these conditions.
0:01:36 > 0:01:39Now, new scientific research warns sodium valproate's toxic
0:01:39 > 0:01:43legacy could be eternal, harming generation after generation
0:01:43 > 0:01:44In
0:01:44 > 0:01:47It's because I took that medication, grandkids have been affected by it.
0:01:47 > 0:01:57So many people's lives have been affected and ruined.
0:02:07 > 0:02:10This is all her fit medicine.
0:02:10 > 0:02:13This one here, I have to give her three times a day,
0:02:13 > 0:02:18this one twice a day, and this one twice a day.
0:02:18 > 0:02:22Every morning, first thing, Karen carefully measures out
0:02:22 > 0:02:26the exact amount of medicine needed to keep her daughter alive,
0:02:26 > 0:02:29to save her from falling into a fatal coma.
0:02:29 > 0:02:31Brigit got hiccups.
0:02:31 > 0:02:33You gonna swallow it?
0:02:33 > 0:02:37I know it's horrible.
0:02:37 > 0:02:38You gotta swallow it though.
0:02:38 > 0:02:40Brigit is 19.
0:02:40 > 0:02:45She still plays with some of the toys she had as a baby.
0:02:45 > 0:02:48This is the photo album I done for Bridgit when we came home.
0:02:48 > 0:02:51Pictures of her in her cot with her toys around
0:02:51 > 0:02:57because she could only just lay there still with her
0:02:57 > 0:02:58head to the side.
0:02:58 > 0:03:00Brigit was born with a catastrophic array of medical ailments,
0:03:00 > 0:03:02including brain damage and spina bifida.
0:03:02 > 0:03:05She is paralyzed from the waist down, even her bowels
0:03:05 > 0:03:07are not fully formed.
0:03:07 > 0:03:11She can't go to toilet, she can't walk, she can't talk.
0:03:11 > 0:03:14She can't think for herself.
0:03:14 > 0:03:17I do all Brigit's overall care.
0:03:17 > 0:03:22I, I think for Brigit, I talk for Brigit, I walk for Brigit.
0:03:22 > 0:03:29I live for Brigit.
0:03:29 > 0:03:32When Karen was pregnant with Brigit, she was prescribed a high dosage
0:03:32 > 0:03:33of the drug, sodium valproate.
0:03:33 > 0:03:37She has epilepsy and the pills were meant to control the seizures.
0:03:37 > 0:03:42But the powerful chemicals that protected her health
0:03:42 > 0:03:46damaged her daughters.
0:03:46 > 0:03:48I pop these tablets into my system and what happens?
0:03:48 > 0:03:52Six months down the line, I'm under ante-natal treatment
0:03:52 > 0:03:54and then they turn round and look at me,
0:03:54 > 0:03:56look at the screen and turn round and say to me
0:03:57 > 0:04:01"What do you want to do you?"
0:04:01 > 0:04:04"You want to have an abortion, you are carrying a spina bifida baby?"
0:04:04 > 0:04:08Like Bridgit, around 20,000 children in the UK and thousands of others
0:04:08 > 0:04:15around the world are believed to have foetal valporate syndrome -
0:04:15 > 0:04:19after being exposed to the powerful drug, valproic acid, in the womb.
0:04:19 > 0:04:22Some of the children are so severely harmed they will never develop
0:04:22 > 0:04:25beyond the mental capabilities of a toddler.
0:04:25 > 0:04:28Others may appear fine but will struggle with cognitive
0:04:28 > 0:04:35and physical disabilities throughout their lives.
0:04:35 > 0:04:41We know from our research that children exposed to sodium valproate
0:04:41 > 0:04:52can be affected physically, they can be affected mentally
0:04:53 > 0:04:55and they can be affected psychologically.
0:04:55 > 0:04:58These children have an increased risk of clefting, cleft pallet
0:04:58 > 0:05:02and these children are more prone to spina bifida
0:05:02 > 0:05:04or neural tube defect.
0:05:04 > 0:05:07We also know that there's an increased risk of congenital
0:05:07 > 0:05:09heart disease and occasionally an increased risk of
0:05:09 > 0:05:10kidney abnormalities.
0:05:10 > 0:05:14Concentrate!
0:05:14 > 0:05:17At her school in Essex, seven year-old Beau attends special
0:05:17 > 0:05:20PE classes to improve her motor skills and her ability
0:05:20 > 0:05:25to interact with others.
0:05:25 > 0:05:29Try to keep your arm straight ? good girl.
0:05:29 > 0:05:31That's enough, perfect.
0:05:31 > 0:05:34I've never worked with a childwith foetal valproate syndrome before.
0:05:34 > 0:05:38Beau finds a lot of things challenging.
0:05:38 > 0:05:43She has actually got a diagnosis of ADHD.
0:05:43 > 0:05:47She also we feel has got problems with her co-ordination so that's
0:05:47 > 0:05:51being looked into in terms of possible dyspraxia.
0:05:51 > 0:05:54Can you try with your other hand and other foot?
0:05:54 > 0:05:56At school, Beau needs special, different treatment
0:05:56 > 0:05:58to the other kids.
0:05:58 > 0:06:01But at home she is just one of three sisters all struggling
0:06:01 > 0:06:06with health problems, caused by foetal valproate syndrome.
0:06:06 > 0:06:09I don't know if it was like denial, but I just I didn't
0:06:09 > 0:06:11when when you see your children
0:06:11 > 0:06:14every day you don't see them as being different ? they're
0:06:14 > 0:06:22just your children and for someone to say there's something
0:06:22 > 0:06:25wrong with your child, you think, no, they're fine,
0:06:25 > 0:06:27they're they're perfect ? but obviously there is issues
0:06:27 > 0:06:29and obviously they need they need extra help.
0:06:29 > 0:06:31You know it's hard.
0:06:31 > 0:06:33Their eldest daughter, 16-year-old Devon needs to be
0:06:33 > 0:06:36constantly watched over.
0:06:36 > 0:06:38She suffers from reflex syncope, a condition which can restrict
0:06:38 > 0:06:42blood supply to the brain.
0:06:42 > 0:06:44I think I am a bit slower than other children.
0:06:44 > 0:06:48I am slower in, like, writing than others.
0:06:48 > 0:06:52I get extra time when I do exams because it takes me
0:06:52 > 0:06:55like a long time to understand what the question means.
0:06:55 > 0:06:58Devon's younger sister,
0:06:58 > 0:07:0111-year-old Sienna is the sibling most affected by the syndrome,
0:07:01 > 0:07:06leaving her with mental and physical impairments.
0:07:06 > 0:07:10It affects me. I get really stressed out.
0:07:10 > 0:07:13I either start just making lots of noises,
0:07:13 > 0:07:16or I just start screaming, screaming or crying because it is then
0:07:16 > 0:07:21just too much for me.
0:07:21 > 0:07:25She has accidents, it's not every single night she has an accident
0:07:25 > 0:07:28but there is some kind of leakage every day.
0:07:28 > 0:07:30She's got this condition because of the medication
0:07:30 > 0:07:33I was taking whilst I was pregnant with her.
0:07:33 > 0:07:36She's incontinent and she soils as well.
0:07:36 > 0:07:38This is something that will go on with her
0:07:38 > 0:07:40for the rest of her life.
0:07:40 > 0:07:43As a remedy for her epilepsy,
0:07:43 > 0:07:47Leanne has always been prescribed sodium valproate.
0:07:47 > 0:07:51Yet both she and her husband say they were never fully warned that
0:07:51 > 0:07:54taking the drug whilst pregnant could damage their children.
0:07:54 > 0:07:57We wasn't told, no way, shape or form that this
0:07:57 > 0:07:59would happen to us.
0:07:59 > 0:08:01There was no, there was no guidelines.
0:08:01 > 0:08:05There was no information, there was nothing.
0:08:05 > 0:08:07This is a drug that was prescribed from a doctor
0:08:07 > 0:08:08and this is what happened.
0:08:08 > 0:08:15We are the ones living with the consequences.
0:08:15 > 0:08:18Since the anti-epilepsy drug was launched in the 1960s
0:08:18 > 0:08:22under various brand names, it's estimated that
0:08:22 > 0:08:24tens of thousands of women around the world have taken it
0:08:24 > 0:08:27during their pregnancies, unaware of the dangers.
0:08:27 > 0:08:30Karen is one of them.
0:08:30 > 0:08:32I didn't think my child was going to be
0:08:32 > 0:08:35like how she is today.
0:08:35 > 0:08:39If I had known when Bridgit was inside me, if I had known now
0:08:39 > 0:08:47what I knew back then, I wouldn't have had my child.
0:08:47 > 0:08:52Emma and Janet also took sodium valproate during their pregnancies.
0:08:52 > 0:08:56They say there were not aware of any warnings and were given no
0:08:56 > 0:08:58indication of the danger by their doctors.
0:08:58 > 0:09:03He didn't even tell me to an effect that I had epilepsy to start with.
0:09:03 > 0:09:07When I got my first prescription there was no warning
0:09:07 > 0:09:07When I got my first prescription there was no warning
0:09:07 > 0:09:09in the boxes at that point, I mean we are talking '83, '84,
0:09:10 > 0:09:10in the boxes at that point, I mean we are talking '83, '84,
0:09:10 > 0:09:16so there was nothing for me at all.
0:09:16 > 0:09:18My husband and I questioned the midwives, questioned
0:09:18 > 0:09:19My husband and I questioned the midwives, questioned
0:09:19 > 0:09:22neurologists and to just be told take this medicine, it's the best
0:09:22 > 0:09:22neurologists and to just be told take this medicine, it's the best
0:09:23 > 0:09:30to control your seizures ? that's great to control the seizures
0:09:30 > 0:09:32but the baby.
0:09:32 > 0:09:34After their children were born with disabilities,
0:09:34 > 0:09:39they set up a charity to raise awareness.
0:09:39 > 0:09:41We started our national campaign in 2013 and the main aim
0:09:41 > 0:09:48was to get warnings on to the boxes, on the patient information leaflets.
0:09:48 > 0:09:58Partly as a result of their campaign in 2016,
0:09:58 > 0:10:00The Medicines and Health Care Products Regulatory Agency
0:10:00 > 0:10:02recommended that warning labels should be featured on all
0:10:02 > 0:10:04valproate-containing medicines.
0:10:04 > 0:10:07GPs must only prescribe the drug to women of child bearing age
0:10:07 > 0:10:09as a last option, after explaining all the risks.
0:10:09 > 0:10:12But why has it taken 50 years to get the warning out?
0:10:12 > 0:10:17In the UK, the Government regulates what information
0:10:17 > 0:10:23is provided to patients and, according to Emma and Janet,
0:10:23 > 0:10:26it knew about the dangers of the drug as far back as 1973.
0:10:26 > 0:10:29They discovered the evidence, deep in the National Archives.
0:10:29 > 0:10:33There you go...
0:10:33 > 0:10:36That a statement, that a statement similar to that proposed by ICI
0:10:36 > 0:10:43could be included on all relevant data sheets but not on packaging
0:10:43 > 0:10:45inserts, so there would be no danger of the patients
0:10:45 > 0:10:46themselves seeing it.
0:10:46 > 0:10:48If they hadn't of made this decision.
0:10:48 > 0:10:50you would have been warned.
0:10:50 > 0:10:52I'd have been warned and probably the boys wouldn't have
0:10:53 > 0:10:54been harmed like they were.
0:10:54 > 0:10:55The 20,000 affected.
0:10:55 > 0:10:58There wouldn't be that today.
0:10:58 > 0:11:02It is an extraordinary scandal.
0:11:02 > 0:11:06Since the very start of its licensing in this country,
0:11:06 > 0:11:11there was knowledge of risk and yet a decision to hide that
0:11:11 > 0:11:13risk from young mothers, a totally sort of paternalistic idea
0:11:13 > 0:11:15that mothers might worry about it.
0:11:15 > 0:11:20Well, of course, mothers have the right to know.
0:11:20 > 0:11:22In a statement The Medicines and Health Care products
0:11:22 > 0:11:26Regulatory Agency said
0:11:26 > 0:11:28"At the time, according to clinical practice
0:11:28 > 0:11:31it was for the doctor to decide how much information a patient was given
0:11:31 > 0:11:36about their medicine.
0:11:36 > 0:11:39Since then the need for patients to be fully informed
0:11:39 > 0:11:41has been underpinned by legislation."
0:11:41 > 0:11:44But charities say the system of warning patients
0:11:44 > 0:11:47is proving ineffective.
0:11:47 > 0:11:50Over the last year hundreds of babies around the world have been
0:11:50 > 0:11:53born with sodium valproate syndrome.
0:11:53 > 0:11:56Many pharmacists and health centres are still issuing the drug
0:11:56 > 0:12:01in generic-packaging with no warnings.
0:12:01 > 0:12:05We are now here in 2018 and the scenario is,
0:12:05 > 0:12:08that woman are still given white boxes in which there
0:12:08 > 0:12:13are no warnings ? there is absolutely nothing on them.
0:12:13 > 0:12:15The fact that women are still not being made fully aware
0:12:15 > 0:12:18of the risks associated with the drug is particularly
0:12:18 > 0:12:22alarming because amongst affected families there is growing fear
0:12:22 > 0:12:26that foetal valproate syndrome is actually being passed on,
0:12:26 > 0:12:33through the genes, from one generation to the next.
0:12:33 > 0:12:39Three generations of the same family.
0:12:39 > 0:12:42Here today are Grandma, two grown-up daughters and their kids.
0:12:42 > 0:12:49Foetal valproate syndrome has dominated their lives.
0:12:49 > 0:12:52It's because I took that medication that's why my kids haven't got
0:12:52 > 0:12:55a normal life and they struggle every single day of their life
0:12:55 > 0:12:58to fit in and do things.
0:12:58 > 0:13:01One of my kids have tried to...
0:13:01 > 0:13:10Couldn't cope and tried to hang themselves.
0:13:10 > 0:13:13If I'd known with my first couple of children that they'd have had
0:13:13 > 0:13:16this syndrome I could have then made that decision whether to go
0:13:16 > 0:13:17on and have more children.
0:13:17 > 0:13:20Sue took the drug Epilim throughout her pregnancies.
0:13:20 > 0:13:23She only discovered it had harmed her children after a doctor
0:13:23 > 0:13:29visited her at home.
0:13:29 > 0:13:31I had pictures up on the wall of the kids
0:13:31 > 0:13:33when they were little and as soon
0:13:33 > 0:13:36as she walked into the room and she seen the pictures then
0:13:36 > 0:13:39she said are these the children and I said yeah and she said yes
0:13:39 > 0:13:41they've definitely got the syndrome.
0:13:41 > 0:13:46It was they had the facial features the high forehead the upturned nose
0:13:46 > 0:13:51and then an appointment was arranged for all the children myself to go
0:13:51 > 0:13:55down to Exeter to have genetic testing done and all other kinds
0:13:55 > 0:13:59of test done and that and it was confirmed.
0:13:59 > 0:14:02Despite their difficulties, Sue's daughters now have
0:14:02 > 0:14:08children of their own.
0:14:08 > 0:14:10In the past, Natalie was prescribed sodium valproate
0:14:10 > 0:14:12to control her epilepsy.
0:14:12 > 0:14:17But she says she stopped taking the pills when she was pregnant.
0:14:17 > 0:14:21Tanya has never taken the drug yet both sisters believe their children
0:14:21 > 0:14:24are displaying the symptoms of foetal valproate syndrome.
0:14:25 > 0:14:26There's certain things
0:14:26 > 0:14:28that they are doing, like their behavioural ways,
0:14:28 > 0:14:29the way they speaking.
0:14:29 > 0:14:35It's just certain things.
0:14:35 > 0:14:38I'm like, I remember doing things like that when I was a kid.
0:14:38 > 0:14:39My little boy is nine.
0:14:39 > 0:14:42He's got dyspraxia, learning difficulties,
0:14:42 > 0:14:47a bowel condition, sensory issues, memory problems.
0:14:47 > 0:14:52I've got two children, both have got dyslexia.
0:14:52 > 0:14:54My daughter's got dyslexia and dyscalculia.
0:14:54 > 0:15:00She's in special needs school.
0:15:01 > 0:15:04Whilst researching this film, we spoke to several families
0:15:04 > 0:15:08who suspect that sodium valproate is somehow just not
0:15:08 > 0:15:13harming their children but their grandchildren too.
0:15:13 > 0:15:16Until now, those suspicions have not been deemed credible but we've
0:15:16 > 0:15:20obtained the results of a major scientific project in South Korea
0:15:20 > 0:15:22which actually supports the idea that the drug can
0:15:23 > 0:15:30harm successive generations.
0:15:30 > 0:15:35Chan Young Shin, a Professor of Pharmacology -
0:15:35 > 0:15:36is leading the research that uses pregnant mice,
0:15:36 > 0:15:38injected with the compound.
0:15:38 > 0:15:42What does your research actually prove?
0:15:42 > 0:15:43What does your research actually prove?
0:15:43 > 0:15:44They are giving the indication or one
0:15:44 > 0:15:45They are giving the indication or one
0:15:45 > 0:15:46of the evidence that this compound could cause autism spectrum
0:15:46 > 0:15:48of the evidence that this compound could cause autism spectrum
0:15:48 > 0:15:51disorder, trans-generationally, through the generations.
0:15:52 > 0:15:54It can give us some kind of clue the same thing
0:15:54 > 0:15:57is happening to humans.
0:15:57 > 0:16:01So it's kind of warning signal.
0:16:01 > 0:16:04The experiment indicates that sodium valproate can travel
0:16:04 > 0:16:09through DNA and afflict successive generations
0:16:09 > 0:16:11with mental health problems.
0:16:11 > 0:16:14In the UK, the findings are being carefully considered
0:16:14 > 0:16:16by the Government and have already triggered concern amongst experts
0:16:17 > 0:16:19on foetal valproate syndrome.
0:16:19 > 0:16:23Dr Rebecca Bromley is a leading neuroscientist and she believes
0:16:23 > 0:16:29the need for more research in this area is urgent.
0:16:29 > 0:16:32That was the first bit of evidence that had in any species
0:16:32 > 0:16:35that potentially might be carried on to the next generation.
0:16:35 > 0:16:38Before this paper came out we just didn't know.
0:16:38 > 0:16:41We had no evidence that it was going to be an issue
0:16:41 > 0:16:44and we were still learning about the longer term effects
0:16:44 > 0:16:48on the individual who had been exposed directly to the drug.
0:16:48 > 0:16:50This is something now that needs to be looked at it
0:16:50 > 0:16:54as quickly as possible to give the families some reassurance.
0:16:54 > 0:16:57The consequences are incalculable.
0:16:57 > 0:17:01How extraordinarily distressing this must be for the families affected.
0:17:01 > 0:17:05The knowledge that this is now in within the DNA of that family
0:17:05 > 0:17:10and potentially transferable from generation to generation.
0:17:10 > 0:17:13At home in Liverpool, Tanya and Natasha
0:17:13 > 0:17:16want to get their children formally diagnosed but like many families
0:17:16 > 0:17:22they are struggling to find a doctor who even knows the syndrome exists.
0:17:22 > 0:17:25I went to the doctors the other day and I asked my doctor
0:17:25 > 0:17:28a question and I said can you tell me is there a possibility
0:17:28 > 0:17:31this could be a part of my FACS?
0:17:31 > 0:17:34My GP turned round and said, "Sorry, what is FACS?"
0:17:34 > 0:17:36I was like, "I have to keep repeating myself"
0:17:36 > 0:17:39and I should not have to do that.
0:17:39 > 0:17:41I said, "I should not have to be your teacher"
0:17:41 > 0:17:43and I walked out of the room.
0:17:43 > 0:17:47I thought, that is not my place to explain to you what FACS is.
0:17:47 > 0:17:48Read my notes.
0:17:48 > 0:17:51Couples that have come to see me in the South West of England,
0:17:51 > 0:17:54some have really struggled to get their GP to refer them,
0:17:54 > 0:17:57I know that for a fact.
0:17:57 > 0:17:59Just stand down next to mum and we will try
0:17:59 > 0:18:01and measure your head.
0:18:01 > 0:18:04It partly depends on really the first hurdle if you
0:18:04 > 0:18:07like, whether family
0:18:07 > 0:18:09doctor or GP has some knowledge or awareness
0:18:09 > 0:18:11of the condition at all.
0:18:11 > 0:18:13Back in London, Bridgit is becoming weaker -
0:18:13 > 0:18:17the drugs are no longer working.
0:18:17 > 0:18:20Her brain is brain damaged so she has only one
0:18:20 > 0:18:22part of her brain that works and the doctor have turned
0:18:22 > 0:18:25round and said now, a neurologist doctor has turned around and said
0:18:25 > 0:18:29they can't give her any more medication no more.
0:18:29 > 0:18:33She has different kinds of seizures ?
0:18:33 > 0:18:36and now she could die any day.
0:18:36 > 0:18:43I love you!
0:18:43 > 0:18:48Karen says Bridgit isn't expected to survive
0:18:48 > 0:18:50beyond a few more months and insists that when that fatal moment comes,
0:18:50 > 0:18:54she must be allowed to die in peace.
0:18:54 > 0:18:57If she was to stop breathing,
0:18:57 > 0:19:03she is not to be resuscitated; she is to be rest in peace.
0:19:03 > 0:19:07No-one will bring her back alive ?
0:19:07 > 0:19:12that's what these letters say on this door.
0:19:12 > 0:19:18It will be more of a relief for me as a mother to let my little girl
0:19:18 > 0:19:24rest in peace knowing that every day I see my little girl having
0:19:24 > 0:19:30a seizure in so much pain as I do.
0:19:30 > 0:19:35That's more painful to watch than seeing my little girl probably
0:19:35 > 0:19:44go from me and be at peace.
0:19:44 > 0:19:46Today, Tanya and Natasha are heading to Liverpool's
0:19:46 > 0:19:49Walton health centre -
0:19:49 > 0:19:52they want to get their children assessed
0:19:52 > 0:19:54for foetal valproate syndrome.
0:19:54 > 0:19:56I am a little bit anxious to know
0:19:56 > 0:19:58what is going to happen, what he's going to say.
0:19:58 > 0:20:02I just think we need to know whether these have got the syndrome,
0:20:02 > 0:20:05because if these have got it and we haven't took the medication,
0:20:05 > 0:20:07if these have got it, is it going to get passed
0:20:07 > 0:20:10on to their children?
0:20:10 > 0:20:12Is it going to stay in the family for
0:20:12 > 0:20:14as long as the family carries on?
0:20:14 > 0:20:17I'd like to try this next one for me, please.
0:20:17 > 0:20:18Neuropsychologist, Professor Gus Baker is the lead
0:20:18 > 0:20:21author of the most comprehensive research programme ever
0:20:21 > 0:20:25conducted into children born to mothers with epilepsy.
0:20:25 > 0:20:28We've actually looked at the children
0:20:28 > 0:20:30from birth and followed them up
0:20:30 > 0:20:34over a six-year period, assessing their development,
0:20:34 > 0:20:37their neuro development, in terms of how well their brains
0:20:37 > 0:20:40are working, their development of their language, their memory
0:20:40 > 0:20:42and their intellect.
0:20:42 > 0:20:44So talk us through the assessment,
0:20:44 > 0:20:48what are you going to do today, exactly?
0:20:48 > 0:20:51What I want to be looking at is how this young boy
0:20:51 > 0:20:54is developing.
0:20:54 > 0:20:57The first one is really straightforward.
0:20:57 > 0:21:01Can you write your name for me?
0:21:01 > 0:21:03I'll be trying to get an overall picture
0:21:03 > 0:21:08of how he is developing
0:21:08 > 0:21:12in relation to, for example, how his peers are developing.
0:21:12 > 0:21:16Can you draw me a house?
0:21:16 > 0:21:19How many bedrooms has it got upstairs?
0:21:19 > 0:21:22Two bedrooms.
0:21:22 > 0:21:24And I drew some flowers, some leaves,
0:21:24 > 0:21:27a gate and a path.
0:21:27 > 0:21:29So, I know you cannot give us a definitive diagnosis,
0:21:29 > 0:21:32but what are your thoughts after that assessment?
0:21:32 > 0:21:36Well, obviously, it is going to take me a little
0:21:36 > 0:21:39while to score up the test results but when I have done that,
0:21:39 > 0:21:42I'll be looking at his strengths and weaknesses and I'll be
0:21:42 > 0:21:45identifying them and trying to map them on to what we understand
0:21:45 > 0:21:51about sodium valproate and how it affects children and then I'll
0:21:51 > 0:21:56probably be in a good position to provide a formulation
0:21:56 > 0:22:00of what I think has happened to him and what we might be able to do
0:22:00 > 0:22:06to ameliorate those difficulties that he is clearly having .
0:22:06 > 0:22:08Even though it could be years before the full
0:22:08 > 0:22:09extent to which her grandchildren
0:22:09 > 0:22:10extent to which her grandchildren
0:22:10 > 0:22:14are affected is known, Sue believes, the drug she first took nearly four
0:22:14 > 0:22:19decades ago has caused infinite damage to her families lineage.
0:22:19 > 0:22:22I do think my grandchildren have been affected by it.
0:22:22 > 0:22:25I have had my worries my kids growing up.
0:22:25 > 0:22:28I've got the worry again with my grandkids.
0:22:28 > 0:22:29How long is it going to go on for?
0:22:29 > 0:22:31It's not fair, not fair at all.
0:22:31 > 0:22:33It's so wrong.
0:22:33 > 0:22:38So many people's lives have been affected and ruined.
0:22:38 > 0:22:43The trans-generational impact of foetal valproate syndrome
0:22:43 > 0:22:46could potentially remain with families for centuries
0:22:46 > 0:22:49and as the first generation of children to be born
0:22:49 > 0:22:51with the condition mature into adults, there is growing demand
0:22:51 > 0:22:57that the Government should pay for their care and support.
0:22:57 > 0:23:00In France a charity-led campaign for compensation is being
0:23:00 > 0:23:05supported by the Government.
0:23:05 > 0:23:08The Government decided to create a special fund
0:23:08 > 0:23:11to help victims.
0:23:11 > 0:23:14There is a fund that is organising all the expertise, to appoint
0:23:14 > 0:23:20the doctors and pay the doctors and who are going to say
0:23:20 > 0:23:22who will have to pay.
0:23:22 > 0:23:25Until now a campaign in the UK
0:23:25 > 0:23:27for compensation to help affected children has failed to receive
0:23:28 > 0:23:30any Government backing.
0:23:30 > 0:23:33But recently the Department of Health has initiated
0:23:33 > 0:23:36a conversation with charities and key MPs who have been fighting
0:23:36 > 0:23:38for a public inquiry.
0:23:38 > 0:23:42We are in a good dialogue,
0:23:42 > 0:23:44The Minister, Lord O'Shaughnessy appears to have taken this
0:23:44 > 0:23:49very seriously, is willing to engage with us.
0:23:49 > 0:23:52He appears to be completely conscious of the need to stop this
0:23:52 > 0:23:55scandal continuing and the need to recognise
0:23:55 > 0:23:59what is happening in France.
0:23:59 > 0:24:04Something similar has to happen here and without delay.
0:24:04 > 0:24:07Unbelievable that the English democracy does not work properly
0:24:08 > 0:24:11and does not help the people.
0:24:11 > 0:24:19The people must put pressure on their Government for that.
0:24:19 > 0:24:19and in
0:24:19 > 0:24:22It's a rallying call that charities in the UK are championing.
0:24:22 > 0:24:25Emma and Janet are at the forefront of the campaign.
0:24:25 > 0:24:27The care package is more important because of
0:24:27 > 0:24:29the trans-generational link now.
0:24:29 > 0:24:33The fact that our grandchildren could be affected, you know
0:24:33 > 0:24:36with neuro-development disorders, possible heart malformations,
0:24:36 > 0:24:39they need care and support.
0:24:39 > 0:24:42For us it is a Government issue, The Government has to take
0:24:42 > 0:24:45responsibility on that matter and make sure these children
0:24:45 > 0:24:48are fully looked after.
0:24:48 > 0:24:51As a parent in particular my two are a lot older now
0:24:51 > 0:24:54they are in their 20s and it's a worrying factor for me,
0:24:54 > 0:24:57I'm not always going to be here to take care of the kids
0:24:57 > 0:25:00and to live an independent life is going to be really,
0:25:00 > 0:25:04really difficult for them.
0:25:04 > 0:25:07Janet's two grown-up sons, both of whom suffer
0:25:07 > 0:25:11with the syndrome, are completely dependent and still live at home.
0:25:11 > 0:25:16Philip is more seriously affected.
0:25:16 > 0:25:22I am 25 now and symptoms are I can't concentrate for long,
0:25:22 > 0:25:32When I go outside my social interaction is zero
0:25:32 > 0:25:40and I am very apprehensive with going anywhere, really.
0:25:40 > 0:25:44Both of Janet's sons have suffered with neurological problems
0:25:44 > 0:25:48since birth and two years ago doctors discovered that Philip,
0:25:48 > 0:25:54like many maturing sufferers of foetal valproate syndrome,
0:25:54 > 0:25:57had developed yet another condition.
0:25:57 > 0:26:00After I have finished my college course that
0:26:00 > 0:26:03I had been on for eight years; I was diagnosed with epilepsy,
0:26:03 > 0:26:06stress-related epilepsy.
0:26:06 > 0:26:13It is really hard for me, it's really hard for me...
0:26:13 > 0:26:22It's hard for me to describe the symptoms
0:26:22 > 0:26:28but I know it's really difficult to live with.
0:26:28 > 0:26:31I think it is disgusting the way the Government are acting.
0:26:31 > 0:26:37I think they should pay compensation to all these babies that have
0:26:37 > 0:26:43grown up now into young adults that are struggling.
0:26:43 > 0:26:46Any kind of apology and compensation might come too late
0:26:46 > 0:26:53to help children like Bridgit.
0:26:53 > 0:26:54It breaks my heart.
0:26:54 > 0:27:04I picked this plot because it is a lovely cemetery.
0:27:06 > 0:27:13I didn't want to choose a cemetery yet but because of how my daughter
0:27:13 > 0:27:17is deteriorating so rapidly, I needed to do it because I won't
0:27:17 > 0:27:19be able to do it once she does pass away.
0:27:19 > 0:27:23Mother's shouldn't have to bury their daughter no
0:27:24 > 0:27:27mother should do that.
0:27:27 > 0:27:33My family are mourning now and will be the day
0:27:33 > 0:27:43I lose my little girl.
0:27:44 > 0:27:47If you are concerned about any of the information
0:27:47 > 0:27:50you have seen in this film, please contact your GP urgently.
0:27:50 > 0:27:52Do not stop taking any medication prescribed by your doctor
0:27:52 > 0:27:55without speaking to them first.
0:27:55 > 0:27:58And that's about all for tonight's Inside Out.
0:27:58 > 0:28:00Before we go though, let's have a quick look at what's
0:28:00 > 0:28:05coming up on next week's show.
0:28:05 > 0:28:09London is getting noisier.Good living in the capital put you're
0:28:09 > 0:28:12hearing at risk. This
0:28:12 > 0:28:13living in the capital put you're hearing at risk. This is the big
0:28:13 > 0:28:17storyline at the stock well. It's absolutely deafening.
0:28:17 > 0:28:19Could living in the capital be putting your hearing at risk?
0:28:19 > 0:28:24Is London too noisy?
0:28:24 > 0:28:27The fight to get fit - we set one family the challenge
0:28:27 > 0:28:28of being more active.
0:28:28 > 0:28:32And ? how Brixton became home to London's last working windmill.
0:28:32 > 0:28:38It's really special to be in a building that is much as it was a
0:28:38 > 0:28:43hundred years ago. It's amazing to see what we achieved over 200 years
0:28:43 > 0:28:45ago.
0:28:45 > 0:28:48Tonight's programme will be available on the iPlayer -
0:28:48 > 0:28:53just head to our website - bbc.co.uk/InsideOut ?
0:28:53 > 0:28:55just click on London.
0:28:55 > 0:29:01Thanks very much for watching ? I'll see you again next week.