What works and what needs to change: Women’s perspectives on pregnancy-related epilepsy care and service improvements in the United Kingdom

Background Despite clinical guidelines emphasising coordinated, person-centred care for pregnant women with epilepsy, preventable maternal deaths and suboptimal care continue. Purpose To explore the perspectives of women with epilepsy on pregnancy-related care and their views on how to improve it. Methods We conducted semi-structured interviews with eleven women aged 27–39 years who were currently pregnant or had given birth within the last two years. We recruited participants from across the UK. Data were analysed using reflexive thematic analysis. Results Three main themes were identified. Enabling and supportive care was characterised by supportive healthcare professionals as anchors, proactive preconception counselling, collaboration between providers, a single coordinator of care, and access to specialist expertise. Fragmented and inadequate care included absence of informed decision-making, poor coordination, women being left to correct errors in their own care, encounters lacking empathy, limited epilepsy knowledge among non-specialist staff, and over-reliance on remote contact. Priorities for service improvement included early and direct conversations about risks (including SUDEP), respectful and balanced communication, partnership-based adult-to-adult dialogue, in-person consultations, and coordinated, holistic care that includes mental health support. Conclusion Despite longstanding guidelines, women with epilepsy continue to experience significant gaps between recommended standards of pregnancy care and service realities. Women describe deficits in early, proactive discussions about medication and risks, informed decision-making, and joined-up care, leaving some to perform unsupported "safety work", correcting errors and mediating between neurology, obstetric and midwifery teams. Improving care requires a commitment to holistic, person-centred support that embeds clear, respectful, two-way communication with women and across services as a core safety practice.