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of everyone affected by epilepsy

Sodium valproate campaign

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 campaigns@epilepsy.org.uk

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.

Event Date: 
Sunday 12 October 2014 - 21:04

Comments: read the 5 comments or add yours


As a male taking epilim (sodium valproate) since I was 7 and now 50 years of age, could this drug effect my unborn child also and is there any cases of this.

Submitted by Andrew Pearmain on

Hi Andrew

Thankfully, when it’s the father taking sodium valproate (or other epilepsy medicines) it does not affect the baby’s development.



Epilepsy Action Helpline Team

Submitted by Diane-Epilepsy ... on

I have been taking Sodium valproate since I was 25. My daughter was born with spina bifida and hydrocephalus, my two sons are both healthy. I have just read of a study suggesting the possibility that problems can be passed down to another generation. Is this something my sons should be aware of or could it only be passed on through my daughter? My daughter and younger son are twins.

Submitted by Kathy Anderson on

Hi Kathy

There is some new research to suggest that this could be passed down through generations. But the research is still at a very early stage, and it has only been conducted on mice. There would need to be a considerable more research before there was any certainly about this happening.  

Here is our general information about epilepsy and inheritance.

Hope that helps.



Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

Hi I've been taking epilim for 30 plus years and was taking it through both my pregnancies my daughter was born in 1992 without a thyroid gland and an abnormal gait we discovered 2 years later she also had learning difficulties as her speech did not develop, my son was born in 1994 and when he was 4 was diagnosed with autism and learning disabilities. I am now at the stage were it's a constant fight for anything for them when it comes to benefits or support from social care, because the warnings were not there when I took the drug, if they had been I could of taken different actions or at least been prepared.

Submitted by Cheryl lovelle on