I immediately recognised that more needed to be done to inform and educate women and healthcare professionals on foetal anticonvulsant syndrome – a group of malformations that can affect babies if exposed to certain AEDs. I joined a national foetal anticonvulsant support group and offered to help raise awareness and share the experiences of families whose children had been affected. But in order to properly inform and educate, I needed the relevant evidence. At the time Dr Pam Crawford, Professor John Dean and Professor Peter Turnpenny were conducting research into women with epilepsy and the effect of AEDs on their children. They shared their published research with me and I began presenting this information to healthcare professionals around the UK through lectures and seminars.
After realising our hospital had no services tailored for women with epilepsy, I was determined that should change. With support from our lead consultant obstetrician and Head of Midwifery, I established a unique epilepsy specialist midwifery service providing pre-conceptual and pregnancy counselling. My aim was to prevent any baby from being harmed by AEDs whilst ensuring women became experts in their own health condition. I wanted to make sure every woman I met was correctly diagnosed with epilepsy, prescribed the AED most likely to control their seizures in the lowest therapeutic dose and least likely to cause harm to a future developing baby in pregnancy. With some small voluntary donations, I was able to found a hospital registered charity, ‘Women with Epilepsy’, which partly funded my work. The service became entirely NHS funded in 2017, and we launched a new website to provide free information for women with epilepsy and their families.
Research has moulded my career. My journey started with reading articles about foetal valproate syndrome and SUDEP and learning how to critique research. My passion for the topic was ignited and I started studying to become our first independent and supplementary non-medical prescriber. I then became our NHS Trust’s co-investigator for a multi-centre study researching AED management in pregnancy. I’ve now completed my own dissertation research study for a master’s degree in advanced clinical practice. (Morley K, 2020). The study explored experiences of using a toolkit I designed at the antenatal booking appointment and has provided valuable insights into the opinions of midwives, which are rarely sought in the epilepsy research paradigm.
Research has enabled me to support women and their prescribers with evidence-based advice during the transition from preconception years to pregnancy and beyond. To inform decision making, it is imperative women are provided with research evidence on the effects of medication exposure during pregnancy and whilst breastfeeding. This must be balanced with information about any potential risks associated with changing or withdrawing from their current medicine regime, including the risk of SUDEP and, importantly, providing a pillar of support during that process. As I specialise in AED management, it is rewarding to read research findings that have mirrored my clinical experience with these medicines. It also highlights the imbalance in therapeutics available for women of child-bearing potential with generalised epilepsy versus the options available for men, and the dilemmas this can lead to in decision-making and research design.
It was such a privilege to share my clinical experience at the European Medicines Agency first public hearing into valproate (2017), and in the Cumberlege Review (2020) and MRHA valproate guidance (2021). Being part of the epilepsy community has enabled me to be a voice for my patient group nationally and internationally, ensuring care and future research is inclusive of all women with epilepsy irrespective of race, ethnicity, gender, socioeconomic status, and health provider. I am forever grateful for the opportunities I have had, but mostly to the women and families I have had the privilege of working with along the way.