Mothers call for compensation for families affected by Sodium Valproate linked to birth defects

• Video report by ITV Granada Reports Political Correspondent Lise McNally

Two mothers have told MPs about the devastating effects an epilepsy drug they were prescribed while pregnant has had on their children.

Emma Murphy, from Greater Manchester, and Janet Williams, from Lancashire, have been campaigning for decades to get compensation for families affected by Sodium Valproate.

The drug is used to treat several conditions, but it should not be given to women of child-bearing age unless they are on a pregnancy prevention programme, as it can cause lifelong disabilities to babies exposed in the womb.

After decades of parents and medical practitioners raising safety concerns, a 2020 review concluded that thousands of mothers and babies had been exposed to "avoidable harm".

On Tuesday, Emma and Janet appeared before a panel of MPs to share their story of taking Sodium Valproate and the impact it has had on their families.

All of Emma's children have been affected in various ways, with diagnoses of cerebral palsy, incontinence, deafness, speech and language delay, valgus foot, and sensory processing disorder.

Speaking in front of the select committee, she said: "When it came to starting a family, me and my husband questioned it at every appointment - and we were never warned.

"I've now got five children affected, all diagnosed with Foetal Valproate Spectrum disorder.

"To know a medication you were prescribed was deemed as safe by medical professionals, to later find out that it is the cause of your children's disabilities, to watch them struggle every day...as a parent, that's devastating."

Janet, who has two sons also living with life-long disabilities because of the drug, said: "We realised neither of my sons were reaching the usual milestones, they weren't reaching for toys, smiling came very late, walking was very late, speech was very late.

"They have scoliosis, curved toes, problems with balance."

Emma and Janet have successfully campaigned for clear warnings about getting pregnant to be included on the packaging when the medication is prescribed - but have told MPs that the safety measures are not being properly enforced in some cases.

An independent review of the use of Sodium Valproate in 2020 set out nine recommendations to the Government.

Six of those are being implemented, but the Government has rejected the need for an independent agency to oversee a compensation scheme.

Instead, there is a gateway on the NHS Resolution website for families who wish to bring in a clinical negligence claim

But Janet and Emma say forcing families to sue the NHS because they need financial help is "an insult".

Janet added: "Ten years were already spent pursuing clinical negligence claims that never got us anywhere. They said they didn't have a case to answer.

"Now they want us to sue the NHS when we know it wasn't the NHS's fault. Doctors were doing what they'd been told by the Department of Health."

Emma said: "These are families who are really struggling with every element of bringing up a disabled child. It's not the NHS's fault, and the Government know that."

Now, newly re-appointed health minister Maria Caulfield has said she is willing to re-examine the idea of compensation for the families.

Speaking to the panel of MPs who had heard Emma and Janet's story, Ms Caulfield said "I'm willing to look at the idea [of a redress scheme], and that's why I've asked the new Patient Safety Commissioner to look into this.

"I know this may take a bit of time to work this up, but she's very sympathetic. She's met with campaigners and will be alive to the sorts of redress schemes that they will be looking for, but it's important to look at that properly before we make any decisions" 

Janet and Emma hope this is another step forward in their decade long journey and say they plan to keep fighting for families until compensation is agreed.

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