Role of guidelines, legislation, litigation and mechanisms for SUDEP communication in the UK and in the USA: A state-of-the-art review

INTRODUCTION: Sudden unexpected death in epilepsy (SUDEP) remains a leading cause of premature mortality in people with epilepsy despite decades of research and guideline development. METHODS: This state-of-the-art narrative review synthesises multidisciplinary evidence from clinical guidelines, epidemiology, legal frameworks, policy initiatives, and advocacy sources in the United Kingdom (UK) and United States of America (USA). The review is structured to examine current practice ("where are we now"), evolution of influencing mechanisms ("how did we get here"), and future directions for improving SUDEP prevention ("where should we go next"). RESULTS: Where are we now SUDEP risk communication remains inconsistent despite clear guideline recommendations. Implementation is hindered by clinician-level barriers, practice variability, and insufficient attention to social determinants and health inequities. Surveillance is limited by misclassification and under-recognition of SUDEP. How did we get here Incremental development of guidelines, evolving medico-legal standards, and increasing advocacy have shaped current practice. Legislative efforts in the USA, have emerged but remain fragmented, while UK approaches rely on professional guidance, coronial systems, and state-led learning mechanisms. Litigation has clarified duties but is an inconsistent driver of improvement. Where should we go next A coordinated, systems-based approach is required, integrating strengthened guidelines, structured communication tools, improved surveillance, advocacy support, expert involvement in investigations, and local system leadership. CONCLUSION: No single intervention is likely to prevent SUDEP. Patients and bereaved families value discussions about SUDEP, yet legislation and litigation highlight shortcomings in these conversations. Evidence-based communication focused on modifiable risk factors may help reduce premature mortality, including SUDEP.