Transcripts For BBCNEWS Inside Out 20180127

Records that the government knew birth defects could be cause but chose to hide the evidence. My mother would not have had the children if she knew we were going to have these conditions. Now, new Scientific Research reveals this could be eternal, harming generation after generation. They talk about medication and grandkids have been affected by it. You can swallow it. It is horrible that you have got to swallow it. Bridget is 19 she still plays with some of the tories she had as a baby. This is the photo album i did for bridget, when she came home, pictures of her in a cart with her toys around was that she could only lay there with their head to one side. Bridget was born with a catastrophic array of medical ailments including spina bifida or she is paralysed from the waist down. Her bowels are not fully formed. Yelena kushi cannot go to the toilet, she cannot walk or talk. She cannot go to the toilet. I think bridget, i talk to bridget. I live bridget. I popped these tablets into my system. What happens question at six months down the line i am under antenatal treatment and then they turn round and look at me. Look at the screen and turn around and say to me. What do you want to do. You wa nt to to me. What do you want to do. You want to have an abortion, you are carrying a spine if a dead baby. 20,000 children in the uk and others around the world are believed to have this syndrome, after being exposed to the powerful drug in the wound. Some of the children are so severely harmed they will never develop beyond the mental capabilities of a toddler. Others may appearfine 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 are exposed to this drug and they can be affected physically. They can be affected mentally. And they can be affected psychologically. These children have an increased risk of cleft palate and are more prone to spina bifida. We also know there is an increased risk of congenital Heart Disease and occasionally an increased risk of kidney abnormalities. At her school in essex, this seven Year Old Girl attends special pe classes to improve her motor skills and ability to react with others. That is perfect. I have never worked with a child with this condition before she finds a lot of things challenging. She has a diagnosis of adhd. She also, we feel, has problems with her coordination. That is being looked into in terms of possible dyspraxia. Can you try with the other hand . School, she needs different treatment to the other kids. At home when she isjust treatment to the other kids. At home when she is just one of three sisters, all struggling with Health Problems caused by this condition. Yelena guy dernel know if it was denial. When you see children every day you do not see them as being different. Will someone to say there is something wrong with your child, they are fine, they are perfect. Obviously there are issues and they need extra help. It is hard. The eldest daughter, 16 year old devon needs to be constantly watched over. She suffers from a condition which restricts the supplied to the brain. I think restricts the supplied to the brain. Ithinki restricts the supplied to the brain. I think i am slower than other children. I am slower at writing and iam given children. I am slower at writing and i am given extra time when i do exams. It takes me a long time to understand what the question means. Her younger sister, 11 year old siena, is the sibling most affected by the syndrome, leaving her with mental and physical impairments. By the syndrome, leaving her with mental and physical impairmentslj get mental and physical impairments. get really stressed out. I either make a load of noises or id just start screaming, screaming all crying. It is too much for me. She has accidents. It is not every single night she has an accident. 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 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 19605 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 theircampaign 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 harmed like they were. 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 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 from one generation to the next. Three generations of the same family. Here today in liverpool 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 tick the drug throughout her pregnancies. Now, her daughters are worried that children have inherited the syndrome as well. Certain things they do, their behaviour, my daughter has dyslexia and is in a special needs school. My little boy is nine. He has dyspraxia, learning difficulties, about condition, memory problems. I never took the tablet. When i think about it, i have the facts will stop they could be. 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 their 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. Im 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 you 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. Even though it could be years before the full 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 with 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 oshaughnessy 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 20s 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. Im 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 or 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. Good afternoon. The skies overhead not looking particularly inspiring and generally cloudy conditions for many parts of the uk. It looked like that for weather watcher in devon are short time ago. There were outbreaks of rain and mild air from the south west. Outbreaks of rain and mild air from the southwest. Just about all of us feeling the effects. Something chilly air coming into the north west of the back is where we will see the best of the brightness in the afternoon. The cloud will break up the afternoon. The cloud will break up in scotland and Northern Ireland was up something brighter coming down across the north of england. Further east it will be misty and murky bringing patchy rain. Mention the brighter skies pushing in across scotland. Blue skies across the highlands. Youll be windy for the rest of the afternoon. Far north of the mainland, up into the northern isles. The best of the sunshine in the east of scotland with places like aberdeenshire doing very well. As we bring the cloud and patchy rain further southwards and eastwards there will be some mild air in the weather system. Ten, 11th in cardiff and plymouth as the end the afternoon but at this evening the afternoon but at this evening the rain will stagger its way through south east england. Clear spells will allow it to turn chilly. Windy for a time in the far north. By windy for a time in the far north. By the end of the night we will bring some cloud in starting sunday morning at ten, 11 degrees in parts of the west. We have a mild south westerly airflow. Trapped in thatis south westerly airflow. Trapped in that is a weather front. The wind direction means it is sitting in place across scotland through the day tomorrow. Central and southern scotla nd day tomorrow. Central and southern scotland has seen sites a lot of rays. Is a salsa lots of flowers with results on westerns hosts and hills. Cloud will break far as temperatures tomorrow is set to 1a, 15. The very mild air will eventually cease away because of this holdfast disasters. Behind the sentences full figures sit sideways. Is the middle parts of this week it will be a chilly feel. Dry weather around on tuesdays with hefty showers sicilians from the north west will north west. This is bbc news im Annita Mcveigh the headlines at two the attorney general acknowledges that very serious mistakes over the disclosure of evidence by prosecutors have led to the collapse of recent trials in england and wales. There is a need for more training, for Police Officers and prosecutors. The Disclosure Programme is not new, its been there since 1996, and police and prosecutors should know what they have to do. At least 63 people have been killed and 150 injured in a bombing in the afghan capital, kabul. The taliban say they carried out the attack. Three teenage boys have been killed when they were hit by a car in west london. A man has been arrested. Also in this hour paris is on high alert forflooding. Record rainfall has caused the river seine to burst its banks in one of the wettest januarys in paris in more than a century