Epilepsy Society welcomes redress scheme for valproate victims but says research is also vital

Today, Patient Safety Commissioner, Dr Henrietta Hughes, launched The Hughes Report calling for redress for all those harmed by valproate. Some 20,000 babies in the UK are known to have been harmed by valproate which causes physical and neurodevelopmental disorders in 40 per cent of babies exposed to the drug during pregnancy. The report also calls for redress for victims harmed by pelvic mesh.

The Hughes Report calls for the Government to implement a redress scheme that will demonstrate  it has listened and acted on the concerns of families who have campaigned tirelessly for decades to see that justice is done.

It calls for both financial and non-financial redress. Dr Hughes' recommendation is for a two-stage financial redress scheme, beginning in 2025. The scheme should be based on restorative practice and should be co-created with those who have been harmed by the epilepsy medication.

The Epilepsy Society has warmly welcomed Dr Hughes' recommendations but warned that research into other epilepsy medications is also vital to stop history from repeating itself with other drugs.

Epilepsy Society responds

Clare Pelham, Chief Executive of the Epilepsy Society responds to The Hughes Report: 

“The recommendations within The Hughes Report are frank, fair and long overdue. Dr Hughes is cut of the same cloth as Baroness Cumberlege in her ability to champion women who have been appallingly let down by a maelstrom of white-coat misogyny.

Redress must now follow swiftly to the timetable set by Dr Hughes. And rightly so. But the government must also take note of her call for vital research that will stop history repeating itself.  We must break the endless cycle of harm followed by compensation.  We cannot – and must not – go round this loop again with other epilepsy drugs that also increase the risk of harm during pregnancy. 

There must be no more babies born with disabilities that could have been avoided.  Only a foolish politician would see redress for the harm caused by sodium valproate as job done.

Future generations

Families who have campaigned tirelessly around sodium valproate have not only campaigned for themselves but for future generations. They have been determined to ensure others’ lives are not devastated in the way that so many of theirs have been over the last five decades. 

Since 2021, the Epilepsy Society’s Safe Mum Safe Baby campaign has been calling for the government to invest in vital genomic research that could identify which anti-seizure medications will be safer for which women during pregnancy. It would reduce the risk of babies being born with preventable disabilities. It would be a long-term legacy for women whose lives have been a campaign for justice. 

They deserve to be memorialised.  They deserve a living legacy.

Dedicated research funds

Dr Hughes’ report echoes our call, challenging the government to create dedicated research funds to better understand why certain anti-seizure medications elevate the risk of harm for the developing foetus. This ring-fenced money for epilepsy research would be a living legacy.  Generations of families would have cause to be grateful.

Women with epilepsy have been shouting loudly about this for years. But now the emotional argument is backed by cold, hard figures. A report from the OHE, commissioned by the Epilepsy Society, spells out the cost of a lifetime disability for a baby harmed by epilepsy medication. The truth is it ranges from £2.5 million in severe cases of Autism Spectrum Disorder to £124,000 for a child born with Attention Deficit Hyperactivity Disorder.

It doesn’t take a mathematical genius to work out that investment in research today would not only result in healthier outcomes for the next generation but would save the government money.

Redress will cost. It will be financially painful. But women and their families have been hurting for decades and the recommendations of the Hughes report will see that this wrong is righted, at least financially. But it is now time for a government with a clear vision to ensure that the valproate scandal is never allowed to happen again. Time to break the cycle of harm followed by compensation.  And replace it with a cycle of research followed by harm avoided that ends with happy, healthy babies.

In 10 years’ time, we don’t want to be looking in the rear mirror and saying we should have done something to safeguard future generations. We want to be able to say that pioneering, innovative research has given babies a healthier chance in life and has kept women safe during pregnancy. We can do it, so we must do it.  Otherwise, politicians will be complicit in future harm to mothers and their babies caused by their inaction.”