Echoes of thalidomide: the sodium valproate scandal

Families of children harmed by a drug that caused up to 20,000 babies to be born with disabilities have welcomed calls for compensation after their plight was compared to the thalidomide scandal.

The Patient Safety Commissioner has said in a new report that "thousands of women, children, and families have been harmed" by the epilepsy drug sodium valproate and "there is a compelling case for the government to award them redress".

'Bigger than thalidomide'

Sodium valproate is a medication used to treat epilepsy. It is also sometimes used to treat bipolar disorder and migraines. Although research papers from as early as the 1980s suggested valproate medicines were dangerous to developing babies, it was given to women with epilepsy for decades without proper warnings.

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It has caused autism, learning difficulties and physical disabilities in an estimated 20,000 babies in Britain over the past five decades. The statistics are clear: among women who take valproate during pregnancy, around 10 in every 100 babies are born with birth defects, compared to two to three out of 100 of the general population.

The range of disabilities in babies born to those who took the drug include spina bifida, facial and skull malformations including cleft lip and palate, as well as distortions of the limbs, heart, kidneys, urinary tract and sexual organs.

The Patient Safety Commissioner for England, Dr Henrietta Hughes, who was asked by the government to look into a potential compensation scheme for those affected, has called on ministers to act quickly to help victims.

Speaking to the BBC, she said she believed the sodium valproate scandal was "bigger than thalidomide". She was referring to the severe birth defects caused by a morning sickness drug, which was licensed in the 1950s in the UK and was only withdrawn after William McBride (pictured above), an Australian doctor, alerted the world to its dangers. Thousands of mothers had given birth to disabled babies.

Dr Hughes said she had "heard so many heartbreaking stories" and many of those born with disabilities – known as foetal valproate syndrome – had been unable to work or look after themselves as adults, meaning their parents had to give up work to care for them.

Emma Murphy, whose children suffer from cerebral palsy, autism, deafness, hypermobility and sensory processing disorder, told The Guardian that she's "been told so many times – by midwives, by doctors, by consultants – over so many years that it was safe to keep taking".

"We know it's not our fault," said Murphy. "We know it's the government that chose not to warn women of the risks." But "the guilt remains with every single mother this has happened to".

Karen Buck, whose 25-year-old daughter, Bridget Coyle, is severely brain damaged, bed bound and has disabilities in her organs and spine, told The Times she is "always on call" for her.

Buck received little help until she fell down the stairs while carrying her daughter six years ago. But the part-time carers she now has are not trained to do everything Bridget needs, so Buck still cannot work. At night, Buck is the sole carer and can herself have several epileptic seizures a week.

Families like these are "subjected to degrading questions again and again" to prove they "really need state help", said the paper.

'Callous disregard'

Dr Hughes has suggested initial payments of £100,000 for victims. A failure to help victims of the scandal would show "a callous disregard for the pain and the suffering" of those harmed, she said. So a redress scheme is "a question of justice" for families who had "been fighting for years or even decades".

A UK government spokesperson told ITV News that "our sympathies remain with those affected", adding that "the government is carefully considering the Patient Safety Commissioner's recommendations and will respond to the report fully, in due course".

Meanwhile, the full scale of suffering might still not be known. Although the number of those badly affected by sodium valproate has been put at 20,000, some campaigners believe the figure could be significantly higher. Janet Williams, co-founder of In-Fact (the Independent Fetal Anti Convulsant Trust), said she doesn't think we are "ever going to find out and pinpoint an actual number of children that's been harmed by this".