EpiSafe team at the House of Lords
Pregnant women with epilepsy could see a major improvement in the care they receive and reduce maternal mortality risk. This is thanks to a new project led by researchers from Universities across the UK, including the University of Liverpool.
The EpiSafe project, funded by the National Institute for Health and Care Research over five years, will create and trial an evidence-based, personalised care bundle specifically designed for pregnant women with epilepsy. The team of researchers will provide healthcare professionals caring for these women the tools and guidance they need to streamline the care they provide and allow for shared decision-making with women regarding their circumstances.
At a parliamentary event earlier this week, hosted by former Health Minister Baroness Cumberlege to mark the early stages of the project, patients and researchers explained how important this project is for ensuring that women across the UK get a say in managing epilepsy during pregnancy.
Addressing the event, Baroness Cumberlege said: “The EpiSafe programme is crucial in creating evidenced based pathways which must ensure the voices and experience of women directly shape solutions. The success of this programme will only be realised if there is meaningful collaboration between researchers, clinicians, and women with epilepsy and their families. Cooperation is vital to spur change.
“All those involved in the care of pregnant women have a duty to safeguard the wellbeing of all mothers with chronic health needs. I will follow the progress of innovations borne from initiatives such as this closely, and with the help of others advocate tirelessly for their swift translation into enhanced standards of care.”
The project consists of six work packages to create the EpiSafe risk assessment and treatment pathway, that will facilitate early specialist epilepsy care for high-risk women. EpiSafe 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.
Marta García-Fiñana, Professor of Health Data Science at the Institute of Population Health and EpiSafe PI for the University of Liverpool said: “It is essential that women with epilepsy, who are understandably concerned about the safety of the newer AEDs during pregnancy and the possible risks to their developing child, receive evidence-based information before deciding on the safest medication for their type of epilepsy and dose.”
In collaboration with Dr Rebecca Bromley, a paediatric neuropsychologist from the University of Manchester, and colleagues from Birmingham, Belfast, Melbourne and PPIE representatives, Prof García-Fiñana will study the long-term development of children (7-11 years) exposed to AEDs before birth. This research is expected to empower pregnant women with epilepsy, enabling them to make informed decisions about the safe use of AEDs.
Professor Shakila Thangaratinam, Dame Hilda Lloyd Chair of Maternal and Perinatal Health at the University of Birmingham and EpiSafe Chief Investigator said: “Epilepsy continues to be one of the main causes of mothers dying in pregnancy and postpartum period. Sadly, we are not observing a fall in maternal deaths. On the contrary, 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.
“We know that the primary factors contributing to these poor maternal outcomes are the lack of specialist antenatal care and reduced compliance with anti-seizure medication. The EpiSafe programme of work has the potential to improve the care these women receive and save lives within this high-risk group.”
Significantly, at the core of the EpiSafe programme are mothers with lived experiences of epilepsy from diverse backgrounds. They will play a pivotal role throughout the lifetime of the programme in shaping the development and roll-out of the EpiSafe bundle. Charity partners on the programme include Epilepsy Research Institute and Epilepsy Action, who will provide invaluable insight and guidance.
Pictured above (l-r): Mrs Ngawai Moss (PPIE representative, Co-I), Dr. Rebecca Bromley (Paediatric Neuropsychologist, PI for University of Manchester), Dr. Matthew Bluett-Duncan (Research Fellow, University of Manchester), Professor Shakila Thangaratinam (Dame Hilda Lloyd Chair of Maternal and Perinatal Health, University of Birmingham, Chief Investigator), Dr. John Allotey (Associated Professor in Epidemiology and Women’s Health, University of Birmingham) & Professor Marta García-Fiñana (Professor of Biostatistics; PI for the University of Liverpool).