The sodium valproate scandal has hit the screens with new documentary ‘Mums Vs Big Pharma’ due to air next week (Monday 9 November), showing the decades-long battle families have been fighting to get vital redress for the harm caused to their children.
An estimated 20,000 families have been affected by taking epilepsy medication sodium valproate during pregnancy. Thousands of women were not informed of the potential risks to their unborn babies of taking the medication during pregnancy.
Families are now dealing with the life-long and life-changing effects of this lack of information.
In the wake of the documentary, patient group the Sodium Valproate Redress Alliance is calling for urgent justice: “The delaying tactics must stop – it is time for action.”
The alliance brings together voices from all four UK nations to raise awareness of the issues families are facing and lobby the UK government to fulfil the recommendations from the Cumberlege review into the scandal and the Hughes report laying out next steps.
Becci Smart, 39, Wales
Becci was prescribed Epilim, a branded version of sodium valproate, as the most effective anti-seizure medication for her form of epilepsy.
“At the time, the risks to unborn children weren’t widely discussed between patients and healthcare professionals,” she said. “The only advice I was provided was to take 5mg of folic acid to reduce any potential complications, such as cleft lip or spina bifida.
“I fell pregnant in 2007 while taking valproate. I became aware soon after my son’s birth that something was not right. We spent years searching for answers under the care of multiple healthcare professionals, but we were often dismissed.
“It took 16 years before someone finally listened to our concerns and we got a diagnosis of foetal valproate spectrum disorder (FVSD).”
Becci wants to see acknowledgement from the governments of all four UK nations, and to highlight the far-reaching effect of this scandal across all four UK nations and beyond.
“This is not a problem that can be pushed aside, these are our lives,” she said. “Decades of carrying guilt and shame that doesn’t belong to us. Decades of dismissal. Decades of anger and betrayal. Decades of seeking justice and truth.
“We are now six years on from the Cumberlege review and two years on from the Hughes report. Interim payments should have been issued last year.
“Justice must be now.”
Anna Jamison, 32, Northern Ireland
Anna’s mother was prescribed sodium valproate for her epilepsy, which she continued to take during her pregnancy, having also not received warnings over the risks.
“As a result, I now live with medical, physical and psychological challenges, which impact greatly on my daily life and that of my wider family,” Anna said.
Anna and her family had no idea that valproate had caused her problems until they read about it in the news when the Cumberlege review was announced. They gave testimony for the review in Northern Ireland and met other affected families.
Anna and her family want to see the government implement the recommendations of the Hughes report of a financial and non-financial redress.
Anna added: “Thanks to subsequent support from Epilepsy Action we were able to link with other campaigners from across the UK and establish the Sodium Valproate Redress Alliance.
“Working as an alliance of families and campaigners from across the UK, I would also like to see greater awareness of foetal valproate syndrome (FVS), firstly by the medical profession and secondly by families who may have been exposed to valproate and remain in the dark about the effect of the drug.
“Victims of the sodium valproate scandal have had to wait for justice for too long! Why is the government taking so long to compensate people who were administered a drug within our national healthcare system and been harmed as a result?
“Victims are getting older and many have died or are in bad health as a result of their medical and psychological conditions. We need redress now to put this battle for redress behind us so that we can get on with living our lives as best we can.”
Charlie Bethune, Scotland
“I first became aware of the valproate campaign after our adopted daughter was diagnosed with FVSD.
“As a result, I joined several UK-wide valproate groups, however, after the Cumberlege report was published, it became clear that most of the UK groups were focused entirely on the UK Government, with little awareness that Scotland has a completely separate health system, NHS structure and legal framework.”
Charlie set up the charity Valproate Scotland to campaign for action from the Scottish government. Through its work, Scotland has an independent patient safety commissioner in place and NHS services are being developed to support people affected.
Valproate Scotland has joined the alliance, saying: “While health, education, and social care are devolved matters, redress is reserved to Westminster.”
Also calling for a speedy response and redress scheme from the government, Charlie said: “We have waited far too long. Governments have had more than enough time to develop a plan, and we now need a firm timetable for implementing a redress scheme. We are not going away. The delaying tactics must stop — it is time for action.”
Janet Stockley-Pollard, 58, England
Janet first became aware of the risks from valproate when her friend showed her a newspaper article around 20 years ago, about the litigation taking place against Sanofi Aventis, the company that manufactured sodium valproate.
“My children had a lot of difficulties by this point, and my friend knew that I had been on sodium valproate in each of my pregnancies,” Janet explained. “I contacted the solicitors dealing with the case and subsequently, my two youngest were diagnosed with FVS and became test cases. My older children were later diagnosed with it too, but not until they were in their 30s.”
Janet and her husband Steve joined OACS (Organisation for AntiConvulsant Syndromes) to help support others. They have been fighting for change ever since, Janet said.
Joining the alliance, Janet said: “We joined in with the forming of the alliance as I believe together, we are stronger. All four nations coming together fighting the same battle and still not being heard. I am hoping this will change with a collective approach and many members with years of experience within this, all coming together.”
In urging the government to act on the Cumberlege and Hughes reports, Janet said: “When Steve and I hosted the pilot meeting for The Cumberlege Review back in 2018, we finally felt hope that we were finally being listened to, and that things would change.
“That was eight years ago, and that hope has been replaced with frustration and anger, but also with fatigue due to battling for 20 years.
“Families have waited far too long for the support, both financial and nonfinancial, that is badly needed. Parents and carers are getting older, as are the children, and we will not be around forever to provide the support that is needed. We also see a similar pattern of behaviours in our six grandchildren, causing a triple disability in families, with over three generations all battling with their health.
“Please resolve this, provide the financial and non-financial support as a matter of urgency – allow us to focus on our families in the here and now, whilst we still can.”
Support for sodium valproate victims
Speaking to others in a similar situation, Becci said: “You aren’t to blame. As parents it’s so easy to blame ourselves, but the truth is, we were kept in the dark. It’s ok to grieve, it’s ok to be angry, to feel hurt, betrayed and everything else in between.
“We know what you are going through. We know the fight and how it feels. Whenever you are ready, we are here, however that looks for you – whether that’s an email or a like on a post that mentions us, we are here.”
Anna urged affected people to join the campaign, adding: “We are a community of victims and get strength from each other in coming together as a UK alliance of voices for redress. We will continue our quest for redress and the more people that join with us the stronger our national voice will be.”
Charlie echoed this, saying: “We need public pressure on politicians to ensure this injustice is finally addressed. This is something our society must put right.”
Janet added: “I urge you not to stop taking your medications, but speak to your medical advisors. Know that you are not alone and that it is not your fault. Reach out – the best support is from others who understand and share your experiences.”
The alliance has submitted a petition to the government calling for:
- Meaningful engagement with affected families across all four UK nations
- Establishment of a comprehensive redress (financial and non-financial) scheme with a clear timetable for implementation
- Immediate interim payments for affected families
You can sign the petition online to support the cause.
If you’ve been affected by the valproate scandal, you can get in touch with the Sodium Valproate Redress Alliance by emailing [email protected] or following them on Facebook.
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