The Scottish, Welsh and Northern Irish governments have written to the UK government to urge UK MPs for a clear response and resolution to the valproate scandal, the subject of new BBC documentary ‘Mums vs Big Pharma’.
In a joint letter to patient safety minister Dame Diana Johnson, the health ministers from Scotland, Wales and Northern Ireland said the delays in response and action are “causing significant anxiety and distress” for patients across all UK nations.
For decades, women with epilepsy were prescribed the medication sodium valproate for their condition without being informed about the risks it carries if taken during pregnancy. However, these risks had been known since the 1970s.
Around 20,000 families have been affected, with children born with severe physical and developmental problems.
“Concerning” lack of action
In 2020, Baroness Cumberlege published a report following a review into this and two other recent medical scandals. She highlighted the suffering many of these families have faced and recommended that redress schemes be set up.
In 2024, the Patient Safety Commissioner, a role set up following a recommendation in the Cumberlege report, Dr Henrietta Hughes, published another report, with recommendations around setting up a redress scheme.
She recommended this be done in two stages, an initial quick financial payment to all affected families of around £25,000 and a following payout based on each person’s individual needs.
However, six years on, families are yet to receive any response around a redress or a timeline from the government of when this might happen – which the health ministers from the devolved nations called “concerning”.
Devolved nations urge action
The letter to Dame Diana said: “Those impacted by the issues considered in the Hughes Report have already waited many years for recognition and resolution, and the lack of clarity regarding the UK Government’s intentions is adding to that uncertainty.
“Given the length of time since the publication of the report, we believe it is now imperative that the UK Government provides clarity on its intentions. We therefore ask that you set out, at the earliest opportunity, the UK Government’s proposed approach to responding in full to the Hughes Report.
“Those affected have waited far too long for certainty and deserve a clear understanding of the next steps.”
The delay in response is having a significant impact on the families affected.
Families have waited too long
Anna Jamison, 32, from Northern Ireland was affected by valproate which was prescribed to her mother when she was pregnant, without any warning of the risks.
She lives with many medical, physical and psychological challenges as a result. She stressed that those affected can’t wait any longer for support.
She said: “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.”
Janet Stockley-Pollard, 58, from England shares these concerns. Her children have all been diagnosed with foetal valproate syndrome (FVS) as she was prescribed sodium valproate with no information about risks in pregnancy, and she has been battling for 20 years for justice and support.
She said: “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.”
Becci Smart, 39, from Wales was prescribed valproate while she was pregnant, affecting her son. He wasn’t diagnosed with foetal valproate spectrum disorder (FVSD) until he was 16 despite clear signs that there were problems soon after his birth.
She said: “This is not a problem that can be pushed aside, these are our lives. 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.”
Charlie Bethune from Scotland said his adopted daughter was diagnosed with FVSD. He said: “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.”
The governments of the devolved nations said they “stand ready to consider any proposals”, with a spokesperson for the Welsh government adding: “For far too long those harmed and their families have been without an answer from the UK Government. It is an answer only Westminster can give.”
You can read more stories from across the UK and find out about the Sodium Valproate Redress Alliance on the Epilepsy Action website.
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