Families affected by epilepsy drug campaign for changes in the benefit system
A number of disabled people are being forced to apply for Personal Independence Payments [PIP] after contracting physical and learning disabilities after being prescribed the epilepsy drug sodium valproate.
The drug was prescribed to a number of women over the past few decades, until it was finally found unsafe after around 20.000 babies went on to form physical disabilities, autism and learning disabilities.
Despite thousands of children developing health problems the government refused to offer any compensation, even though an independent review conducted by Baroness Cumberlege concluded those affected should be entitled to some form of pay-out in 2020.
One of those paying the price after his mother was assigned the drug is Cameron Pollard [pictured above with his family] , a teenager who was diagnosed with foetal valproate spectrum disorder [FVSD].
Up until the age of 16 he was claiming disability living allowance, but when Cameron reached his mid-teens he had to apply for PIP which requires completing a detailed form comprising 25 - 40 pages.
However, as little is known about FVSD, even if a nurse approves the claim, it can still be rejected by the Department for Work and Pensions [DWP] leading to a tribunal.
People on PIP have to reapply for their benefits every three years, but in some circumstances where the condition will remain the same the DWP offers indefinite awards.
However, such awards have never been granted to those living with FVSD.
All of Cameron’s siblings, his sister, Jade, and two brothers Dale and Kyle are living with FVSD because their mum Janet, 55, took sodium valproate to control her epilepsy when she was pregnant.
Steve Pollard, 64, is no stranger going to tribunals fighting for his children’s benefits.
He told The Sunday Times: “The way they question you, it’s like they don’t believe most of what you say. They make you feel like you’re lying. They talk about Cameron while he is there about his difficulties and he really doesn’t like that.”
Over the past months there has been added pressure to change the system for people living with a disability as a result of mothers being prescribed sodium valproate.
In 2022 Jeremy Hunt, the former health secretary who is now chancellor, said: “The families impacted by this scandal have suffered the most egregious injustice, and it’s time the British state faced up to its responsibilities — just as we eventually did to victims of the thalidomide scandal. There is a moral duty of care which it would be shameful and indefensible to duck.”
Cameron’s case is one of thousands from people living with FVSD which can be traced back to the use of sodium valproate.
“I still hear from people affected by sodium valproate and am very moved by the stories I hear and the suffering they and their families still experience,” Cumberlege said. “I will continue my drive for redress for all those harmed.”
Janet Williams from In-Fact, which campaigns on behalf of families affected by the drug, said: “This is why redress is so vital, as it would cover the needs of our children over and above what benefits can afford and support them throughout life when their parents can’t.”
Wes Streeting, the shadow health secretary, is supporting families urging the government to make changes to the benefit system.
He said: “I urge them to take action to put these injustices right and give all those affected the security and respect of a health service that listens to them.”
A DWP spokesperson said they have met campaigners this month to try to make the benefit system more fairer and take conditions such as FVSD into account.
They added: “Our assessors are health professionals who are trained to assess claimants with less familiar health conditions like foetal valproate spectrum disorder and they have access to up-to-date guidance to refresh their knowledge.
“Where there is enough paper evidence to determine entitlement, face-to-face, video or telephone assessments are not carried out. In many cases, people with long-term conditions that won’t improve receive an ongoing Pip award with only a light review every ten years.”