What the issue is
Sodium valproate is a medicine used to treat epilepsy. It is often prescribed under the brand name Epilim, but there are other brands too. For some people it might be the most effective epilepsy medicine, and the only medicine that helps to control their seizures.
Sodium valproate can cause serious birth defects and developmental issues in babies if taken during pregnancy.
Sodium valproate was licensed in 1972. There was evidence then of its risks during pregnancy. However, it wasn’t until much later that these risks were shared widely with patients. As a result of the failures to ensure that people with epilepsy were aware of these risks, it is estimated that 20,000 children have been harmed in the UK.
You must not stop taking your epilepsy medicines without talking to a healthcare professional first. Stopping your medication could be harmful for you and, if you’re pregnant, your unborn child. If you are pregnant, or considering pregnancy, and are taking sodium valproate, it is important that you speak to a doctor about your options. For more information please contact the Epilepsy Action Helpline on freephone 0808 800 5050.
What needs to change
The 2020 Cumberlege Review and 2024 Hughes Report recommended that a redress scheme be set up. This would include compensation to help families pay for support. Some children need care round the clock.
So far, the Government has not acted on these recommendations, leaving the families of the children harmed without support.
What we are doing
We have asked the Secretary of State for Health and Social Care to fully implement the Cumberledge Review’s ‘First Do No Harm’ report recommendations.
Epilepsy Action support the calls for a redress scheme for families of children harmed by valproate. Some of these children require 24-hour care, the cost of which has been entirely on the families’ shoulders for years. The Cumberlege Review and the Patient Safety Commissioner have called for a redress scheme. We also believe it’s time for these families to receive the support they deserve.
How you can get involved
We want to hear about how the rules around sodium valproate have affected you, so we can provide feedback to MHRA and raise any problems that people are experiencing.
We are also asking supporters to write to your MP, asking them to support calls for the government to introduce a compensation scheme. You can download the attached letter and find out who your local MP is here.
If you have been affected by any of the issues discussed, then please email campaigns@epilepsy.org.uk.