The Sodium Valproate scandal: Why are disabled children still waiting for compensation?

ITV News

6 days ago

Jade Wright has lived through every parents' worst nightmare - finding out something she did in pregnancy caused lifelong harm to her children. But it wasn't her fault.
Jade is epileptic, and was prescribed a medication called Sodium Valproate.
It's an effective treatment for the condition and has helped save thousands of lives over the years - but it's also been linked to birth defects in thousands of babies, whose mothers were prescribed the drug during pregnancy - but never warned of the risks to their unborn children.
"Betrayed isn't even the word - because you trust your doctors, don't you?" Jade, from Lancashire, explains.
"When I found out that this medication could cause learning difficulties I was nearly sectioned, I didn't want to be here anymore, because I blamed myself.
"Even though I knew I asked all the right questions, it doesn't take away the guilt.
"I felt like a failure, like I shouldn't be a mum."
All three of Jade's children were born with signs of Foetal Valproate Syndrome - which can include a range of complex disabilities including learning difficulties, speech and language delay, sensory processing disorder, heart and kidney defects, and deformation of the spine or limbs.
Jade says she repeatedly asked doctors about the safety of taking the medication with all three of her pregnancies, but was only told of a slightly increased risk of spina bifuda.
Now, Jade worries constantly about her children's future. Her eldest son Tyler is the worst affected - and Jade believes it's because doctors increased her dosage of Sodium Valproate while she was pregnant.
Jade describes seeing the impact on her children as "devastating to watch"
"This has rewritten their lives, especially Tyler. It's taken so much away from him, he'll never have a meaningful job, and never be able to support himself, he'll never be able to drive.
"I don't really like to think about it, but is he ever going to get the opportunity to get married, to have kids? It's just not realistic, and it's not fair... all because I wasn't told.
"It's a huge scandal, it's a huge injustice - and it needs to be put right doesn't it?"
But putting it right has proved to be politically complicated.
In 2020 an independent review, chaired by Baroness Julia Cumberlege, strongly criticised the industry and regulators and recommended that the Government set up a redress scheme to compensate all affected children and their families.
In 2024, another report, this time by the Patient Safety Commissioner Dr Henrietta Hughes, set out exactly how the compensation scheme could work, and also suggested the Government make quicker interim payments.
But the one year anniversary of that report came and went in February 2025. I spoke to Dr Hughes at the time, and she was clearly frustrated that no progress had been made.
"My message to the Government one year ago was 'Get on with it!'" she told me. "And although the Government has changed my message remains the same.
"Waiting for redress doesn't put the suffering of those who have been harmed on pause, they need help right now."
Now, parliament has once again risen for its summer recess, with still no announcement being made.
For Janet Williams and Emma Murphy, who have helped to lead the campaign for Sodium Valproate compensation, it's another kick in the teeth for their disabled children, and the hundreds of families they represent.
"The weight of anxiety that this is causing on families is utterly ridiculous" says Janet, "and I think politicians have got to realise what that wait feels like."
So what's going on?
I've been following this story for a number of years, across two different political parties in Government, and when we approach them asking for an update you tend to hear very similar replies: that they sympathise with those affected; that this is a complex area of work; that they are working "at pace" to get a compensation scheme in place.
Now all those things can certainly be true - we've seen with the Thalidomide and the infected blood scandals among others that redress schemes are not simple, even with a huge amount of political goodwill.
There are always questions of eligibility, burdens of proof, challenging administration issues. For Sodium Valproate there's the added complication that we don't know for sure how many children were impacted, or how severely.
But Janet and Emma are worried that there's a bigger barrier to compensation victims of the scandal: money.
"We get the impression that they don't want to do this, because they're worried about how much this might cost," says Janet.
And both women say they've heard that they were very close to announcing a compensation scheme before the last General Election, but the then-government had to prioritise another scandal instead.
"We have spoken to a senior member of the Conservative Government" explains Emma.
"In that meeting it was stated that it was actually a toss up between sodium valproate and contaminated blood to get compensation.
"Tthink that could have been their thinking, to pit people's families up against each other, that is just abhorrent. These are real children with disabilities, real adults, real lives. We're not just data."
Now, Labour are in charge, and the Prime Minister has assured victims of the scandal that this is "obviously a really important matter".
But they have been in power for over a year now, and campaigners anxieties are mounting.
This MP, who has been fighting for compensation ever since she came into parliament, admits she feels frustrated by the lack of progress.
We have asked the Government for another update on when they will respond to the Hughes Report and set out the details of a compensation scheme.
A Department of Health and Social Care spokesperson said:
'The harm caused by sodium valproate continues to be felt today. Our sympathies are with those affected and we are fully focused on how best to support patients and prevent future harm.
'This is a complex area of work and the government is carefully considering the Patient Safety Commissioner's recommendations in full.
'Health Minister Baroness Gillian Merron met patients affected and has committed to providing a further update.'
So exactly when things will change for families waiting for redress remains a bit of an unknown.
One thing is clear though when you speak to women like Jade, Janet and Emma - this is a battle they aren't willing to lose.