One Felpham family has spoken of the ‘completely bonkers’ but hope-filled days that have followed a public hearing which highlighted the risk of an epilepsy drug on unborn children.
The resulting national media coverage, headlined by campaigners stating the risks of sodium valproate could have been made public 40 years ago, is something Janet Stockley-Pollard welcomes.
“We have been fighting for this for so long, as have people before us. Thousands have been born that could have been, not saved, but not having to deal with this,” she said. “I just really hope that this momentum continues, that it doesn’t stop. It’s taken so long to get to this point.”
Janet, of Ullswater Grove, set up the Organisation for Anti-Convulsant Syndrome with her husband Steve in 2012 to push for a public inquiry on the topic.
Janet, who has epilepsy, believes her two youngest children, Kyle 19 and Cameron 17, have been affected by the drug.
Janet said: “I set up a petition five years ago to ask for the public inquiry and it is now being recirculated, in those five years nothing has changed. Four years ago Panorama did a piece and we thought people are going to sit up and listen now but it never happened.”
Monday’s hearing is part of a review, initiated in March, which was prompted by concerns the European Union (EU)-wide ‘risk minimisation measures’ currently in place are not ‘sufficiently effective’.
Janet said the findings so far include that a toolkit, designed to aid practioners treating patients with the drug – which is also used for bipolar disorder and migraine headaches – who might be looking at having a family, are ‘good’ but still not reaching 70 per cent of women.
“It has been said this is the new thalidomide but we say it is much more serious.
“We are aware it is a postcode lottery at the moment as to whether the practitioner has the knowledge to look at alternatives – this is meant to be a last resort.”
Another issue is that the risk of developmental problems associated with the drug means the impact isn’t necessarily apparent at birth.
Janet said: “We have found things have cropped up as our children have grown. People might have two/three/four children in the family before it is picked up.
“Add to this that you have a parent that is disabled, that is why they are taking the drug, and children that aren’t effected often become carers so they aren’t able to do what other children can either.”
Due to the pregnancy link with the issue, Janet said there is also a risk that the focus can fall on the adults rather than the children.
“Our son gave an interview recently and he said he didn’t know how much of the problems were him and how much are the drug.
“We don’t necessarily think about what the children are thinking, mine has said he feels guilty that as a family we can’t go out or do what others can. Many children, including one of ours, are always going to need support – not just as children but for their lives.
“I felt guilty for years too but I know I asked the questions.”
The review is tasked with ensuring the warning is reaching who it needs to reach and putting an action plan into place.
With another meeting set for two weeks time, Janet said the ball is now rolling and ‘hopefully we will see that difference’.
Janet is passionate that the awareness is aided by schools too and would like to see the impact of prescription drugs during pregnancy being taught alongside those of smoking and drinking.
“I know some people would love the drug to be withdrawn, that has never been us.
“It is very effective at what it does, it allows people to lead lives they might not have done otherwise but it is about the warning, it is about people having the information they need to make choices.”
For more about the Organisation for Anti-Convulsant Syndrome visit www.oacscharity.org