University News Last updated 30 November 2023
Pregnant women with epilepsy could see major improvement in their care thanks to a new five-year study backed by Birmingham City University (BCU).
The EpiSafe project, funded by the National Institute for Health and Care Research, aims to reduce the maternal mortality risk among women with epilepsy by helping create a pathway to specialist antenatal care.
"Epilepsy-related maternal mortality remains alarmingly high in the United Kingdom, especially for Black mothers, so this study is extremely timely,” said Dr Annalise Weckesser, a medical anthropologist at BCU who is leading one of the project’s six work streams.
Epilepsy continues to be one of the main causes of mothers dying in pregnancy and the postpartum period. While one in 250 women who give birth in the UK have epilepsy, one in 10 women who die during or after childbirth have the condition.
The problem is getting worse, too. There has been a doubling of the rates of Sudden Unexpected Death in Epilepsy (SUDEP) in mothers between 2013-15 and 2019-21 in UK and Ireland.
To launch the project, BCU’s team of experts joined the University of Birmingham, Epilepsy Research Institute, Epilepsy Action and other key stakeholders at the House of Lords on Wednesday (29 November).
Speaking at the event, former Health Minister Baroness Cumberlege said: “The success of this programme will only be realised if there is meaningful collaboration between researchers, clinicians, and women with epilepsy and their families. Co-operation is vital to spur change.”
The EpiSafe project will also study the long-term effects of newer anti-epileptic drugs (AEDs) on children's development. Many mothers are prescribed these newer AEDs due to concerns with older medications, yet they often discontinue them out of fear of potential harm to their baby.
Elaine Denny, Emeritus Professor of Health Sociology at BCU, has previously carried out research in this area.
“In interviews with women living with epilepsy during and after their pregnancy, we found that many had unmet needs and a lack of access to specialist help,” she said. “Many women worried about the effects of anti-epileptic drugs on their unborn child, but also about the effect of seizures during pregnancy on their child’s development and their ability to care for their baby after birth.”
The project will seek to promote shared decision-making with women regarding their epilepsy and pregnancy. It will also give healthcare professionals the tools and guidance they need to streamline the care they provide for pregnant women with epilepsy.
Professor Judith Dyson, from BCU’s College of Health Sciences, said: “Practitioners must consider not only the most up-to-date evidence, but also use their clinical judgment in often managing the multiple care needs of an individual while taking into account their wishes, preferences and priorities. We will work with women and practitioners to fully understand the issues and to develop a suite of strategies to support optimal care.”
Dr Joy Orpin, a Research Fellow and member of the BCU team, added: “I’m excited to be working on this project with the research team that will be improving the lives of women with epilepsy.”