Why are we doing this?
This page includes some information about the risks that people with epilepsy can face during pregnancy. It is important to remember that most people with epilepsy have safe pregnancies and healthy babies. For more information about epilepsy and pregnancy, you can visit our pregnancy information pages.
Epilepsy Action are working to improve safety and experiences for pregnant people with epilepsy. We have started this project because we know people with epilepsy face specific challenges during pregnancy. Some of the risks faced include:
- A higher risk of dying during pregnancy
- A higher risk of stillbirth and miscarriage
- Anti seizure medications can increase the risk of fetal abnormalities
What have we done so far?
Collaboration between Epilepsy Action and NHSE North West Midwifery team
Epilepsy Action and the maternity and midwifery team covering the North West of England have worked together to identify the problems pregnant people with epilepsy face, and to create solutions to those problems.
We started by finding out what guidance was currently being used by maternity care providers, and what gaps there were in that guidance. We also spoke to a wide range of people with epilepsy about their experiences and what they would want pregnancy care to look like. We also discussed pregnancy care with different groups of healthcare professionals, to find out what they do in practice and what they think could be improved.
Using that information, we developed clinical guidance and a service specification. These documents explain what needs to happen to keep someone with epilepsy safe before, during and after a pregnancy. We also created a benchmarking tool that healthcare providers can use to find out how closely they currently follow best practice guidance.
These documents were piloted across the North West of England.
What are we doing next?
The resources and tools we have created are now being rolled out to other regions across the UK. This is helping each maternity hospital find out what they are doing well, and what they could change to make improvements. We are also able to compare hospitals with their neighbours, to encourage them to share the things they are doing well.
We are also working with healthcare professionals to create a list of what midwives and obstetricians should know about epilepesy, depending on what kind of job they do within maternity care.
Would you like to know more?
To register your interest and be kept up to date with how this project is developing, please fill in the form below.