Campaigning mum’s relief at epilepsy drug review
Felpham mum’s four chidren all suffer from health conditions due to the drug
After 15 years of tireless campaigning, a review has confirmed what a West Sussex mother knew all along: she, and others like her, were let down by the healthcare system.
Janet Stockley-pollard, 52, from Felpham, was never told that taking the anti-epilepsy drug sodium valproate while pregnant risked harming her unborn children. But her four children have health conditions caused by the drug, with three having a diagnosis of fetal valproate syndrome.
Last Wednesday, a damning report was published following a two-and-a-half year review into the drug, as well as two other medical interventions, which found that many lives had been ruined because officials failed to hear the concerns of women affected.
Janet said: “When we first got [the report], we felt numb. We’ve waited so long, we’ve fought for so long. The fact that someone has listened is such a relief.”
The report prompted a Government apology, which Janet said felt ‘overwhelming’.
She said: “Actually, it wasn’t our fault. You’ve acknowledged that it’s your fault and not mine. It’s massive.”
The report included a number of recommendations, and Janet particularly welcomed the establishment of a redress scheme to support those affected. She said: “What we now want to see is that they move forward with that and that the Government acts. Although it’s a really big step, we don’t think it’s the end of the journey.”
Janet started taking sodium valproate aged 15, a year after she was diagnosed with epilepsy, and went on to have four children, all of whom have experienced health issues, particularly her youngest, Kyle and Cameron.
It was not until she saw a newspaper cutting back in 2005 about a court case between the drug company and affected families that Janet and her husband Steve drew the link between the drug she was taking and her children’s health.
Her two youngest children went on to be used as case studies in the court case. The settlement would have ensured they had financial security for their futures – but after five years, it folded. This was ‘absolutely devastating’ but Janet refused to give up and years of campaigning began – which resulted in the review being held.
Janet has always argued that women like her should have had informed consent about the real risks of taking the drug. “If we had had all the information, we could have made the choice that was best for us,” she said. “I would have changed medication or come off it. It should have been my choice, and other women’s choice. We had that choice taken away from us.”
In a press conference marking the release of the report, review chairman Baroness Julia Cumberlege, said: “It was known from the very beginning that [sodium valproate] is harmful to unborn children. No one disputes that. Yet, even today, hundreds of women who are taking valproate become pregnant without being aware of the risks.
“These women and their children have been let down by the healthcare system.
“Health professionals do not inform them of the risks, regulators have not done enough to make them do so, and no one is tracing those affected. There is simply a woeful lack of support.”