Transcripts For BBCNEWS Inside Out 20180128

Thousands of babies around the world, genetically harmed in the womb by one drug. She cant go to the toilet, she cant walk. She cant talk. We bring to light the records that show the government knew the drug causes birth defects yet chose to hide the truth from expectant mothers. My mum should not have had to have the children that were affected, if she knew that we were going to have these conditions. Now, new Scientific Research warns sodium valproates toxic legacy could be eternal, harming generation after generation its because i took that medication, grandkids have been affected by it. So many peoples lives have been affected and ruined. This is the photo album i done for bridgit when we came home. Pictures of her in her cot with her toys around because she could onlyjust lay there still with her head to the side. Brigit was born with a catastrophic array of medical ailments, including brain damage and spina bifida. She is paralyzed from the waist down, even her bowels are not fully formed. She cant go to toilet, she cant walk, she cant talk. She cant think for herself. I do all brigits overall care. I, i think for brigit, i talk for brigit, i walk for brigit. I live for brigit. When karen was pregnant with brigit, she was prescribed a high dosage of the drug, sodium valproate. She has epilepsy and the pills were meant to control the seizures. But the powerful chemicals that protected her health damaged her daughters. I pop these tablets into my system and what happens . Six months down the line, im under ante natal treatment and then they turn round and look at me, look at the screen and turn round and say to me what do you want to do you . You want to have an abortion, you are carrying a spina bifida baby . Like bridgit, around 20,000 children in the uk and thousands of others around the world are believed to have foetal valporate syndrome after being exposed to the powerful drug, valproic acid, in the womb. Some of the children are so severely harmed they will never develop beyond the mental capabilities of a toddler. Others may appear fine but will struggle with cognitive and physical disabilities throughout their lives. We know from our research that children exposed to sodium valproate can be affected physically, they can be affected mentally and they can be affected psychologically. These children have an increased risk of clefting, cleft pallet and these children are more prone to spina bifida or neural tube defect. We also know that theres an increased risk of congenital Heart Disease and occasionally an increased risk of kidney abnormalities. Concentrate at her school in essex, seven year old beau attends special pe classes to improve her motor skills and her ability to interact with others. Try to keep your arm straight good girl. Thats enough, perfect. Ive never worked with a child with foetal valproate syndrome before. Beau finds a lot of things challenging. She has actually got a diagnosis of adhd. She also we feel has got problems with her Co Ordination so thats being looked into in terms of possible dyspraxia. Can you try with your other hand and other foot . At school, beau needs special, different treatment to the other kids. But at home she is just one of Three Sisters all struggling with health problems, caused by foetal valproate syndrome. I dont know if it was like denial, but ijust, i didnt when you see your children every day you dont see them as being different theyre just your children and for someone to say theres something wrong with your child, you think, no, theyre fine, theyre theyre perfect but obviously there is issues and obviously they need they need extra help. You know its hard. Their eldest daughter, 16 year old devon needs to be constantly watched over. She suffers from reflex syncope, a condition which can restrict blood supply to the brain. I think i am a bit slower than other children. I am slower in, like, writing than others. I get extra time when i do exams because it takes me like a long time to understand what the question means. Devons younger sister, ii year old sienna is the sibling most affected by the syndrome, leaving her with mental and physical impairments. It affects me. I get really stressed out. I either startjust making lots of noises, or ijust start screaming, screaming or crying because it is then just too much for me. She has accidents, its not every single night she has an accident but there is some kind of leakage every day. Shes got this condition because of the medication i was taking whilst i was pregnant with her. Shes incontinent and she soils as well. This is something that will go on with her for the rest of her life. As a remedy for her epilepsy, leanne has always been prescribed sodium valproate. Yet both she and her husband say they were never fully warned that taking the drug whilst pregnant could damage their children. We wasnt told, no way, shape or form that this would happen to us. There was no, there was no guidelines. There was no information, there was nothing. This is a drug that was prescribed from a doctor and this is what happened. We are the ones living with the consequences. Since the anti epilepsy drug was launched in the 1960s under various brand names, its estimated that tens of thousands of women around the world have taken it during their pregnancies, unaware of the dangers. Karen is one of them. I didnt think my child was going to be like how she is today. If i had known when bridgit was inside me, if i had known now what i knew back then, i wouldnt have had my child. Emma and janet also took sodium valproate during their pregnancies. They say there were not aware of any warnings and were given no indication of the danger by their doctors. He didnt even tell me to an effect that i had epilepsy to start with. When i got my first prescription there was no warning in the boxes at that point, i mean we are talking 83, 84, so there was nothing for me at all. My husband and i questioned the midwives, questioned neurologists and to just be told take this medicine, its the best to control your seizures thats great to control the seizures but the baby. After their children were born with disabilities, they set up a charity to raise awareness. We started our National Campaign in 2013 and the main aim was to get warnings on to the boxes, on the patient information leaflets. Partly as a result of their campaign in 2016, the medicines and Health Care Products Regulatory Agency recommended that warning labels should be featured on all valproate containing medicines. Gps must only prescribe the drug to women of child bearing age as a last option, after explaining all the risks. But why has it taken 50 years to get the warning out . In the uk, the government regulates what information is provided to patients and, according to emma and janet, it knew about the dangers of the drug as far back as 1973. They discovered the evidence, deep in the national archives. There you go. That a statement, that a statement similar to that proposed by ici could be included on all relevant data sheets but not on packaging inserts, so there would be no danger of the patients themselves seeing it. If they hadnt of made this decision. You would have been warned. Id have been warned and probably the boys wouldnt have been the 20,000 affected. There wouldnt be that today. It is an extraordinary scandal. Since the very start of its licensing in this country, there was knowledge of risk and yet a decision to hide that risk from young mothers, a totally sort of paternalistic idea that mothers might worry about it. Well, of course, mothers have the right to know. In a statement the medicines and Health Care Products Regulatory Agency said at the time, according to clinical practice it was for the doctor to decide how much information a patient was given about their medicine. Since then the need for patients to be fully informed has been underpinned by legislation. But Charities Say the system of warning patients is proving ineffective. Over the last year hundreds of babies around the world have been born with sodium valproate syndrome. Many pharmacists and Health Centres are still issuing the drug in generic packaging with no warnings. We are now here in 2018 and the scenario is, that woman are still given white boxes in which there are no warnings there is absolutely nothing on them. The fact that women are still not being made fully aware of the risks associated with the drug is particularly alarming because amongst affected families there is growing fear that foetal valproate syndrome is actually being passed on, through the genes, from one generation to the next. Three generations of the same family. Here today are grandma, two grown up daughters and their kids. Foetal valproate syndrome has dominated their lives. Its because i took that medication thats why my kids havent got a normal life and they struggle every single day of their life to fit in and do things. One of my kids have tried to. Couldnt cope and tried to hang themselves. Sue took the drug epilim throughout her pregnancies. Theres certain things that they are doing, like their behavioural ways, the way they speaking. Its just certain things. Im like, i remember doing things like that when i was a kid. My little boy is nine. Hes got dyspraxia, learning difficulties, a bowel condition, sensory issues, memory problems. Ive got two children, both have got dyslexia. My daughters got dyslexia and dyscalculia. Shes in special needs school. Whilst researching this film, we spoke to several families who suspect that sodium valproate is somehowjust not harming their children but their grandchildren too. Until now, those suspicions have not been deemed credible but weve obtained the results of a major scientific project in south korea which actually supports the idea that the drug can harm successive generations. Chan young shin, a professor of pharmacology is leading the research that uses pregnant mice, injected with the compound. What does your research actually prove . They are giving the indication or one of the evidence that this compound could cause autism spectrum disorder, trans generationally, through the generations. It can give us some kind of clue the same thing is happening to humans. So its kind of warning signal. The experiment indicates that sodium valproate can travel through dna and afflict successive generations with Mental Health problems. In the uk, the findings are being carefully considered by the government and have already triggered concern amongst experts on foetal valproate syndrome. Dr Rebecca Bromley is a leading neuroscientist and she believes the need for more research in this area is urgent. That was the first bit of evidence that had in any species that potentially might be carried on to the next generation. Before this paper came out we just didnt know. We had no evidence that it was going to be an issue and we were still learning about the longer term effects on the individual who had been exposed directly to the drug. This is something now that needs to be looked at it as quickly as possible to give the families some reassurance. The consequences are incalculable. How extraordinarily distressing this must be for the families affected. The knowledge that this is now in within the dna of that family and potentially transferable from generation to generation. At home in liverpool, tanya and natasha want to get their children formally diagnosed but like many families they are struggling to find a doctor who even knows the syndrome exists. I went to the doctors the other day and i asked my doctor a question and i said can you tell me is there a possibility this could be a part of my facs . My gp turned round and said, sorry, what is facs . I was like, i have to keep repeating myself and i should not have to do that. I said, i should not have to be your teacher and i walked out of the room. I thought, that is not my place to explain to you what facs is. Read my notes. Couples that have come to see me in the south west of england, some have really struggled to get their gp to refer them, i know that for a fact. Just stand down next to mum and we will try and measure your head. It partly depends on really the first hurdle if you like, whether Family Doctor or gp has some knowledge or awareness of the condition at all. Back in london, bridgit is becoming weaker the drugs are no longer working. Her brain is brain damaged so she has only one part of her brain that works and the doctor have turned round and said now, a neurologist doctor has turned around and said they cant give her any more medication no more. She has different kinds of seizures and now she could die any day. I love you karen says bridgit isnt expected to survive beyond a few more months and insists that when that fatal moment comes, she must be allowed to die in peace. If she was to stop breathing, she is not to be resuscitated; she is to be rest in peace. No one will bring her back alive thats what these letters say on this door. It will be more of a relief for me as a mother to let my little girl rest in peace knowing that every day i see my little girl having a seizure in so much pain as i do. Thats more painful to watch than seeing my little girl probably go from me and be at peace. Today, tanya and natasha are heading to liverpools Walton Health centre they want to get their children assessed for foetal valproate syndrome. I am a little bit anxious to know what is going to happen, what hes going to say. Ijust think we need to know whether these have got the syndrome, because if these have got it and we havent took the medication, if these have got it, is it going to get passed on to their children . Is it going to stay in the family for as long as the family carries on . Id like to try this next one for me, please. Neuropsychologist, professor gus baker is the lead author of the most comprehensive Research Programme ever conducted into children born to mothers with epilepsy. Weve actually looked at the children from birth and followed them up over a six year period, assessing their development, their Neuro Development, in terms of how well their brains are working, their development of their language, their memory and their intellect. So talk us through the assessment, what are you going to do today, exactly . What i want to be looking at is how this young boy is developing. The first one is really straightforward. Can you write your name for me . Ill be trying to get an overall picture of how he is developing in relation to, for example, how his peers are developing. Can you draw me a house . How many bedrooms has it got upstairs . Two bedrooms. And i drew some flowers, some leaves, a gate and a path. So, i know you cannot give us a definitive diagnosis, but what are your thoughts after that assessment . Well, obviously, it is going to take me a little while to score up the test results but when i have done that, ill be looking at his strengths and weaknesses and ill be identifying them and trying to map them on to what we understand about sodium valproate and how it affects children and then ill probably be in a good position to provide a formulation of what i think has happened to him and what we might be able to do to ameliorate those difficulties that he is clearly having. That he is clearly having. Even though it could be years before the full extent to which her grandchildren extent to which her grandchildren are affected is known, sue believes, the drug she first took nearly four decades ago has caused infinite damage to her families lineage. I do think my grandchildren have been affected by it. I have had my worries my kids growing up. Ive got the worry again with my grandkids. How long is it going to go on for . Its not fair, not fair at all. Its so wrong. So many peoples lives have been affected and ruined. The trans generational impact of foetal valproate syndrome could potentially remain with families for centuries and as the first generation of children to be born with the condition mature into adults, there is growing demand that the government should pay for their care and support. In france a charity led campaign for compensation is being supported by the government. The government decided to create a special fund to help victims. There is a fund that is organising all the expertise, to appoint the doctors and pay the doctors and who are going to say who will have to pay. Until now a campaign in the uk for compensation to help affected children has failed to receive any government backing. But recently the department of health has initiated a conversation with charities and key mps who have been fighting for a public inquiry. We are in a good dialogue, the minister, lord 0shaughnessy appears to have taken this very seriously, is willing to engage with us. He appears to be completely conscious of the need to stop this scandal continuing and the need to recognise what is happening in france. Something similar has to happen here and without delay. Unbelievable that the english democracy does not work properly and does not help the people. The people must put pressure on their government for that. Its a rallying call that charities in the uk are championing. Emma and janet are at the forefront of the campaign. The care package is more important because of the trans generational link now. The fact that our grandchildren could be affected, you know with Neuro Development disorders, possible heart malformations, they need care and support. For us it is a government issue, the government has to take responsibility on that matter and make sure these children are fully looked after. As a parent in particular my two are a lot older now they are in their 205 and its a worrying factor for me, im not always going to be here to take care of the kids and to live an independent life is going to be really, really difficult for them. Janets two grown up sons, both of whom suffer with the syndrome, are completely dependent and still live at home. Philip is more seriously affected. I am 25 now and symptoms are i cant concentrate for long, when i go outside my social interaction is zero and i am very apprehensive with going anywhere, really. Both of janets sons have suffered with neurological problems since birth and two years ago doctors discovered that philip, like many maturing sufferers of foetal valproate syndrome, had developed yet another condition. After i have finished my College Course that i had been on for eight years; i was diagnosed with epilepsy, stress related epilepsy. It is really hard for me, its really hard for me. Its hard for me to describe the symptoms but i know its really difficult to live with. I think it is disgusting the way the government are acting. I think they should pay compensation to all these babies that have grown up now into young adults that are struggling. Any kind of apology and compensation might come too late to help children like bridgit. It breaks my heart. I picked this plot because it is a lovely cemetery. I didnt want to choose a cemetery yet but because of how my daughter is deteriorating so rapidly, i needed to do it because i wont be able to do it once she does pass away. Mothers shouldnt have to bury their daughter no mother should do that. My family are mourning now and will be the day i lose my little girl. A lot of cloud across the British Isles with some mild air as well. The airall isles with some mild air as well. The air all the way from the south west, from a deep part of the atlantic. That journey is south west, from a deep part of the atlantic. Thatjourney is what has allowed it to pick up so much moisture. The mild air could make for the warm etc day of the year so far. Some spots are seeing skies with a bit of blue pushing through. Thanks to the shelter of the hill, so thanks to the shelter of the hill, so here in herefordshire the welsh mountains have ta ken so here in herefordshire the welsh mountains have taken out a lot of the dankiest weather. Not so here, a lot of low cloud round and drizzle. Let us look at the satellite picture. You can see what we have got. There is a big hole here across the midland, putting a block on that 3qu152; 5 3551 fiie ie; 11143 111; 1115 3551 5111115 i see §as ;i as as ; as as 15 temperatures up as high as 15 degrees. Generally a windy came, to the north some thicker cloud for scotla nd the north some thicker cloud for scotland and outbreaks of rain pushing north courtesy o after wet. Seven or eight as a high. As we head under the rain seven or eight as a high. As we head underthe raina seven or eight as a high. As we head under the rain a high of 11 or 12. A grey and windy afternoon. Northern ireland, dry foreer the afternoon after early rain this morning. 12 or 13 degrees as a high. St or 13 widely across england and wales, low cloud and a bit of drizzle across the hills, the mountains of wales and the moores of the south west. A pretty warm afternoon and spring like feel. 0vernight tonight oui spring like feel. 0vernight tonight our weather front in the north sta rts our weather front in the north starts to slide south. Behind that is the colder air. Clearer skies and some sunshine come with the colder air, the colder air and the weather front, they will dig south across the British Isles on monday. That is the biggest change for the start of the week. Things will get colder, so a a mild but grey and wet start in northern england, the midland and wales. It will get brighter in the afternoon but feel chillier. Some rain holding on to the mild air, highs of 11 or 12. To the north you have the best of the sunshine, but you do lose a bit of the warmth. Temperatures closer to average for the time of year. This is bbc news. The headlines at 11am police are trying to establish how many people were in a car, which hit and killed three teenagers in west london on friday. The Cabinet Office minister David Lidington has urged the conservative party to come together amid growing rifts in the party over brexit. Its the conservative family left, right and centre, because were broad church needs to come together in a spirit of mutual respect. Hospitals in the afghan capital, kabul, struggle to cope with casualties from a suicide bombing that killed at least 95 people and injured 158 others. Also in the next hour, a crackdown on rogue parking companies. Firms which use unfair practices are to be banned from accessing motorists details and issuing fines. And st 11 30am, the dateline london panel talk davos, brexit