What’s the issue?
Almost 1 in 5 (18%) of women currently taking sodium valproate are unaware that taking it during pregnancy can harm the development and physical health of an unborn baby.
Epilepsy Action believes that all women who are prescribed sodium valproate must be made aware of the risks. We also believe that all women with epilepsy should receive pre-conception counselling. More needs to be done to ensure that healthcare professionals are given the time and resources to talk to women and girls with epilepsy about pregnancy. Ideally, they must know about the associated risks before they conceive.
In early 2016 the Medicines and Healthcare Products Regulatory Agency (MHRA) released a ‘valproate communications toolkit’. The toolkit was produced to help inform healthcare professionals and women with epilepsy about this issue. This was a positive step towards improving pre-conception counselling for women with epilepsy.
A recent survey by Epilepsy Action, Epilepsy Society and Young Epilepsy, show that more than two thirds (68%) of women taking sodium valproate, have still not received any of the toolkit materials.
What we are doing
We want to make sure that every woman who is prescribed sodium valproate, now and in the future, receives the toolkit.
We have written to Jeremy Hunt, the Secretary of State for Health. We are calling on him to make sure all GPs discuss sodium valproate with their patients. This could be done either through a financial incentive or by making it a mandatory requirement.
We have also asked that the government carry out a national audit of all women with epilepsy. The audit will mean they will be able to find out who is taking sodium valproate.
The European Medicines Agency (EMA) held a public hearing on medicines containing valproate on 26 September 2017 at its London offices. Epilepsy Action and Epilepsy Society presented evidence. We put forward our recommendations and shared our survey results.
How you can get involved
Please take part in our 2017 survey about the risks associated with sodium valproate.
Parliament held a debate on Thursday 19 October about sodium valproate and Fetal Anti-Convulsant syndrome. You can find a summary of what was said at the debate at Epilepsy Today.
We want to hear your story. If you have been affected by any of the issues discussed, then please email firstname.lastname@example.org
It is crucial that women do not stop taking their epilepsy medicines without talking to a healthcare professional first. Stopping your medication could be harmful for you, and if pregnant, your unborn child. If you are worried about any of the issues discussed then please make an appointment with your doctor. For information on planning a baby for women with epilepsy please contact the Epilepsy Action Helpline on Freephone 0808 800 5050.