Campaigning Felpham mum welcomes epilepsy drug review: “The fact that someone has listened is such a relief”
After 15 years of tireless campaigning, a review has confirmed what a Felpham mother knew all along: she, and others like her, were let down by the healthcare system.
Janet Stockley-Pollard, 52, 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 formal diagnosis of Fetal Valproate Syndrome.
On 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 by the treatments.
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.
It also recommended that centres specialising in Fetal Valproate Syndrome were set up around the country, something Janet said was ‘really important’ as the condition is still not well understood.
She said: “We feel all these recommendations are brilliant and the Baroness has done an amazing job.
“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.”
A 15-year-long campaign
Janet started taking Sodium Valproate aged 15, a year after she was diagnosed with epilepsy, and continued to take it for 35 years.
She went on to have four children, all of whom have experienced health issues, particularly her youngest two sons, Kyle and Cameron.
Janet said her stepson was also affected by the strain this put on family life, as she said: “We couldn’t go out or go on holiday, we were always at the hospital dealing with issues.”
It was not until their neighbour brought them a newspaper cutting back in 2005 that Janet and her husband Steve drew the link between the drug she was taking and her children’s health.
She said the report was a ‘tiny box’ detailing an ongoing court case between families affected and the drug company, along with information on who to contact if you thought you might be affected.
“We had never really made the connection until then,” she said.
She rang the number given and her two youngest were soon diagnosed with Fetal Valproate Syndrome (her eldest son Dale was only formally diagnosed with the condition last year, aged 31).
Both went on to be used as case studies in a court case against the drug company.
The settlement would have ensured they had financial security for their futures – but after five years of battling, the court case folded due to a loss of funding.
“It was absolutely devastating,” Janet said. “It was, where do we go from here?”
But Janet did not give up, and years of campaigning began.
“I remember staying up for nights on end, emailing MPs through the night,” she said.
In 2011 she and Steve set up FACT (Fetal AntiConvulsant Trust) to push for a public inquiry on the topic.
She said the campaigning was ‘consuming our lives’ but she was determined to fight for her children and others, and make sure this never happened again.
“During this whole process we’ve met so many friends from around the country, all fighting the same battle, all dealing with the same problems everyday,” she said, describing it as ‘a massive joint effort’.
Thanks to their hard work, the review into the drug was announced, and Janet was involved in the very first pilot meeting back in 2018 in Chichester.
Robbed of a choice
Janet has always argued that women like her should have had informed consent about the real risks of taking the anti-epilepsy 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.”
According to the report, there was a one-in-two chance that women taking the drug while pregnant would go on to have children who were seriously harmed.
Janet and others like her were unwittingly caught up in a ‘Russian Roulette’: “Half of us were going to have children who struggled everyday for the rest of their lives.”
In a press conference speech to mark the release of the report, Baroness Julia Cumberlege, who chaired the review, said: “Sodium valproate has been licensed in the UK since 1972.
“It was known from the very beginning that it 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 and help.”
The Baroness accused the healthcare system of ‘flying blind’ for not knowing the scale of the problem.
She praised the patient groups, like those Janet was involved in, who she said had ‘battled for years’.
“Their expertise, courage and tenacity is truly remarkable and they have helped us throughout,” she said.
“I want to stress our Review was set up because these people refused to give up.”
If you think you have been affected by this issue, find out more and seek support by visiting the Organisation for Anti-Convulsant Syndrome website here