What’s the issue?
Almost half of women with epilepsy are unaware that taking sodium valproate during pregnancy can harm the development and physical health of an unborn baby. More concerning, is that only 20% of women currently taking the drug, know the risks.
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) with the support of former Minister for Life Sciences, George Freeman MP, 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. We want to make sure that every woman who is prescribed sodium valproate, receives the toolkit.
What we are doing
Since the toolkit was published there is concern that it is not reaching the right people. George Freeman MP formed a stakeholder network with epilepsy charities and healthcare representatives. The stakeholder network looked at raising awareness of the toolkit and of the risks of taking sodium valproate during pregnancy.
However, because of recent changes in the Department of Health, there is now no dedicated Minister for Life Sciences. We are concerned that the positive work being done in this area will stop. Therefore Epilepsy Action, Epilepsy Society and Young Epilepsy are urging Nicola Blackwood MP, Parliamentary Under Secretary of State for Public Health and Innovation, to continue George Freeman’s work. We are appealing to her to engage with stakeholders. We want her to take whatever measures necessary to ensure that doctors are having conversations with women with epilepsy about pregnancy.
How you can get involved
We want to hear your story. If you have been affected by any of the issues discussed, then please email email@example.com
In 2016 Epilepsy Action, Epilepsy Society, andYoung Epilepsy conducted a survey of more than 2,700 women with epilepsy to find out more about pre-conception counselling. Below are some of the survey results:
- Almost half (48%) of women with epilepsy are unaware of the risks of taking epilepsy medicine sodium valproate
- 1 in 5 (20%) women currently taking the drug do not know it can harm the development and physical health of their unborn child should they become pregnant
- 22% of the respondents are taking sodium valproate
- 27% of women currently taking sodium valproate have not had a discussion started by a healthcare professional about pregnancy and sodium valproate
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.