Families affected by birth defect drug ‘totally ignored’ by government

ITV Granada Reports Political Correspondent Lise McNally has been speaking to mothers Emma Murphy and Janet Williams who campaign for families affected by Sodium Valproate.
Two mothers campaigning for compensation for victims of a drug that caused up to 20,000 children to be born with birth defects say they are being “totally ignored” by the new Labour government.
Emma Murphy and Janet Williams have been campaigning for decades to get compensation for families affected by the epilepsy drug Sodium Valproate.
They were prescribed the treatment when they were pregnant, which they say caused severe disabilities in their children that “affect their lives every single day.”
The Patient Safety Commissioner recommended the former Conservative government set up interim payments and a full compensation scheme in February 2024.
But since Labour came into power Emma and Janet say they have had no communication from the new government, despite writing several letters to the Health Secretary.
Emma, from Greater Manchester, and Janet, from Lancashire, delivered another letter to Downing Street on Wednesday, 6 November, urging the Prime Minister to honour the report’s recommendations.
“The families that we represent feel ignored by this government”, Emma said. “We’ve written to the Health Secretary four times. We’ve written to the Treasury two times and we’re not hearing anything back.”
Janet added: “We felt we were at the cusp of a victory but since Labour has come in we do feel ignored, just like the postmasters. This is just as important.”
The Department of Health and Social Care said it is “committed to providing an update to the Patient Safety Commissioner at the earliest opportunity.”
What is Sodium Valproate?
Sodium valproate is an effective drug used to treat epilepsy, which was licensed in 1973 – but as early as the 1980s reports of babies born with deformities began to surface.
After decades of parents and medical practitioners raising safety concerns, a 2020 review, called the Cumberlege Report, concluded that thousands of mothers and babies had been exposed to “avoidable harm”.
The Patient Safety Commissioner recommended the Government set up interim payments and a full compensation scheme in February 2024 – but no action has been taken.
All five of Emma’s children have Fetal valproate spectrum disorder (FVSD) and affected in various ways, with diagnoses of cerebral palsy, incontinence, deafness, speech and language delay, valgus foot, and sensory processing disorder.
Janet was prescribed the drug while pregnant with her two sons in 1989 and 1991 – both have FVSD and are unlikely to be able to live independently.
Both mothers, who have been fighting for compensation for families affected by the drug for decades, say they live with the daily worry of who will care for their children when they die.
Emma said: “Compensation payments are so important because my husband and I won’t always be here but my son will always need our care. He will always live with us.
“Who will support him when I’m no longer here? Who will support our children when we’re not here?”
Janet and Emma run INFACT (Independent Fetal Anti Convulsant Trust), a campaign group to raise awareness and urge government action on all of the recommendations set out in the Cumberlege Report, including compensation.
“A lot of these families are struggling financially”, Janet added. “They have done for a quite a long while, especially now the benefits system has changed and they’ve all been moved over onto Universal Credit as well.
“There are some fathers who cannot work because they’re caring for their epileptic wife and their disabled child. To get that interim payment in place would make a huge difference to these families.”
A Department of Health and Social Care spokesperson said: “Our sympathies are with those affected by sodium valproate and vaginal mesh and this government is fully focused on how best to support patients and prevent future harm.
“This is a complex area of work and Health Minister Baroness Gillian Merron has committed to providing an update to the Patient Safety Commissioner at the earliest opportunity.”
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