Can you tell us about your role as a consultant nurse?
I became a consultant nurse in epilepsy in June 2024. A consultant nurse will typically have a doctorate and work in advanced practice with additional components to their role such as teaching, management and research. This is a new career route for an epilepsy nurse wishing to pursue research albeit challenging to incorporate alongside clinical work!
What area of research are you interested in?
Over the years, research has highlighted the struggles across the reproductive life course for people living with epilepsy, evidencing that maternal deaths are ten times higher for women with epilepsy than those without the condition.
I am passionate about supporting people with epilepsy in their pursuit of living a safe and healthy life. I want people to be confident in preparing for pregnancy and navigating through risks and uncertainties. My focus is on raising the profile of pre-conception healthcare for people with epilepsy as an essential stage of preparing for healthy parents and children.
What research projects have you been involved with?
Throughout my career, I have applied for research grants to support my interest in the reproductive health of people with epilepsy, focusing on pre-conception and pregnancy care. My research interests in reproductive health were first ignited as I moved from children to adult epilepsy nursing in 1995 and gained experience working in puberty and hormonal heath in transition care. I was fortunate to be working alongside a team of likeminded clinicians and researchers acknowledging the importance of evidence-based healthcare. Together, we set up a pre-conception clinic and joint neurology and obstetric clinic supporting investigation into the neurodevelopmental risks from anti-seizure medications including valproate.
In 2006, I was honoured to have been awarded the Sir Desmond Pond Fellowship from the Epilepsy Research Institute (then the Epilepsy Research Foundation) to explore the experiences of women preparing for pregnancy. My most recent research was funded by the National Institute of Health Research (NIHR) and gained consensus on the content of pre-conception care for women with epilepsy who wish to plan for pregnancy. We used the Delphi technique to do this – a method used in health care and nursing to bring together knowledge from experts, with the goal of reaching a group consensus.
What impact do you hope your work will have?
I hope to make a positive impact on the translation of basic science into the clinic, to influence and improve the reproductive and hormonal health of people living with epilepsy. More specifically, I hope to improve the delivery of informed evidence-based healthcare and ensure risk information is clearly communicated to better support people as they journey through their reproductive and childbearing years.
What does the Reproduction & Hormones theme aim to achieve?
The Reproduction & Hormones theme aims to accelerate research in this area across the lifespan, working across the translational pipeline to deliver impactful patient benefit. I hope that through our work, we can help more people prepare for pregnancy with knowledge of any epilepsy medicines and seizure risks. We want to see more lives uninterrupted by the influence of reproductive hormones.
Along with my two co-leads, Dr Rebecca Bromley and Dr Faye McLeod, we have recently invited likeminded researchers to join our task force group. Together, we are developing a comprehensive research strategy to deliver the priorities of people affected by epilepsy for research in reproductive and hormonal health, which is due to be published in Autumn 2024.
What are your hopes for the future of epilepsy research?
I hope that the profile of research into reproduction and hormones in epilepsy is raised so that we can secure more funding into the area. There are currently very few researchers working in this field, and so we are keen to build capacity and train and retain more experts in reproduction, hormones and epilepsy. If you’re a researcher interested in this area, you can get involved by joining The Hub. More research is essential so that we can improve evidence-based healthcare for people with epilepsy at all stages of their reproductive life trajectory.
