How two mums took on the government over the sodium valproate scandal
Emma Murphy and Janet Williams have devoted their lives to exposing the failures that harmed their children
BBC
- Gabriel Tate
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Having brought governments to heel and won promises of compensation following what they describe as an institutional cover-up, Janet Williams and Emma Murphy might be expected to reflect proudly on a job well done. Yet when they join me on a video call to discuss their years of campaigning, their frustration and exhaustion are palpable.
Around 20,000 children are believed to have been born with disabilities linked to exposure in the womb to sodium valproate, an anti-seizure medicine once widely prescribed to women with epilepsy, including Williams and Murphy, during pregnancy. “Knowing this wouldn’t have happened to our kids if we hadn’t taken those drugs, the guilt never leaves you,” Williams says. “We know it’s not our fault, but it still eats away.”
Williams’s two sons and five of Murphy’s six children have foetal valproate spectrum disorder. Both women say that GPs and specialists dismissed their concerns when their children began showing signs of developmental difficulties and disabilities, labelling them “bored, hysterical housewives” and directing them towards parenting courses. They tell their story this week in the BBC Two documentary Mums vs Big Pharma.
The pair met in 2009, when Murphy’s sister spotted Williams, who had been campaigning since the early 1990s, on the local news discussing symptoms she recognised all too well. Murphy quickly got in touch, and a formidable bond developed. “We’re always there for each other, no matter what,” says Williams.
Despite support from eminent experts and a growing community of families in similar circumstances, two lengthy legal battles came to nothing: a case against the NHS collapsed in 2003 after legal aid was withdrawn, while another against the manufacturer in 2010 ended after the company argued that it had provided the regulator with all relevant information.
We know it’s not our fault, but the guilt never leaves you
Janet Williams
Then, in 2015, came the breakthrough. While researching at the National Archives in Kew, the pair uncovered evidence that, in 1974, the Committee on Safety of Medicines, the government’s regulator at the time, had decided against issuing appropriate guidance, despite concerns raised by the manufacturer that the drug could cause birth defects. “It could give rise to fruitless anxiety,” the minutes stated.
“It was like, is this real?” recalls Williams. “We couldn’t believe for one minute that the government would do what they’ve done to try and keep it quiet. You trust your GPs and healthcare professionals. There were times when we thought we were going crazy because we weren’t being believed.”
In 2018, it became mandatory for packets of the medicine to feature clear warnings and for doctors to only prescribe sodium valproate to women of childbearing age as a “last line of treatment”. This gave women the information they needed to make informed decisions about their treatment – a phenomenal achievement. And yet, as in the scandals surrounding the Post Office’s Horizon accounting system and infected blood, affected families continue to wait for financial redress.
The sodium valproate scandal has been compared to thalidomide. The Sunday Times
“The lowest moments have come in the last couple of years,” admits Murphy. “Recommendations were made in the 2024 Hughes Report and we’ve had apologies from the government, but we’re still waiting for compensation. Meanwhile, children and their families are suffering every day. We’ve made this documentary so more people know about it. It has been traumatic to relive everything, but we’ve had to block everything out to get the work done.”
“The hardest thing for me,” adds Williams, “is having to point so many families towards the support they need, knowing that, chances are, they’re not going to get that support. It’s a constant battle, and me and Emma have our own families to deal with and the epilepsy on top of that. I’m knackered, but if we’re not going to fight, who will?”
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Williams hopes the documentary will prompt Prime Minister Andy Burnham, who met with her and Murphy while he was Mayor of Manchester, to agree to another meeting, although “there’s been nothing coming back” so far. As we say our goodbyes, Murphy delivers one final message: “We will win this campaign. We don’t know how long it’s going to take us, but we will win.” Andy Burnham would be advised to clear his diary.
Authors
Gabriel Tate
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