Almost 1 in 5 (18%) women currently taking the epilepsy medication sodium valproate do not know it can potentially harm the development and physical health of their unborn child should they become pregnant.

The announcement comes from the results of a new survey carried out by three leading epilepsy charities.

More than 2,000 women with epilepsy took part in the survey, conducted by Epilepsy Action, Epilepsy Society and Young Epilepsy. The survey revealed that just over a quarter (28%) of women who responded, and are currently taking sodium valproate, had not been given information about risks for children exposed to the drug during pregnancy.

It is estimated that around 10% of babies born to women who take sodium valproate during pregnancy are born with physical disabilities. Up to 40% are at risk of developmental issues that can lead to learning difficulties.

These results are in spite of efforts by the Medicines and Healthcare products Regulatory Agency (MHRA) to raise awareness of the issue among healthcare professionals and women with epilepsy. In February 2016, the MHRA released a valproate toolkit to help healthcare professionals talk to women with epilepsy about the risks during pregnancy. The toolkit includes a credit card-sized patient card to be issued by pharmacists, booklets for healthcare professionals and women taking sodium valproate, and a checklist of important discussion points.

However, 18 months later, the survey shows that more than two thirds (68%) of respondents currently taking sodium valproate have still not received any of the toolkit materials.

Epilepsy Action, Epilepsy Society and Young Epilepsy are now calling on the government to ensure that repeat prescriptions for sodium valproate for women and girls of childbearing age are not routinely renewed for more than 12 months without a face-to-face consultation with a doctor or nurse. This consultation must include personal and tailored information about the risks around sodium valproate during pregnancy. Information should also be provided in written format.

This will help to ensure that women and girls with epilepsy who are prescribed sodium valproate are fully informed about the risks to their unborn baby should they continue to take the drug while pregnant.

The three charities will be presenting the survey results at the public hearing along with patient groups, healthcare professionals and other interested bodies from across Europe.

For advice and information about epilepsy and pregnancy, visit the charities’ websites: epilepsy.org.uk, epilepsysociety.org.uk and youngepilepsy.org.uk