Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) support research into (i) Sudden Unexpected Death in Epilepsy (SUDEP) and (ii) epilepsy-related mortality, (b) improve understanding of the causes of those deaths and (c) identify effective prevention measures.

The Department funds research into epilepsy via the National Institute for Health and Care Research (NIHR). The NIHR has funded a range of ongoing and completed epilepsy research, including research into the development of a wireless intracranial neuromonitoring device for people with drug-resistant epilepsy.

The NIHR continues to welcome funding applications for research into any aspect of human health and care, including sudden unexpected death in epilepsy (SUDEP). Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.

NHS England has produced the RightCare Epilepsy Toolkit, and one of the key focuses of the toolkit is reducing epilepsy-related deaths, including SUDEP. The toolkit includes several recommendations for identifying those who are most at risk of an epilepsy-related death and preventing SUDEP.

In addition, the Royal College of General Practitioners aims to raise awareness of SUDEP amongst general practitioners and other primary care professionals, through its e-learning modules on SUDEP and seizure safety, which were developed in collaboration with SUDEP Action and last updated in December 2024.

Health Education England, now part of NHS England, has also developed an Epilepsy Programme in collaboration with SUDEP Action, which is designed to enable healthcare professionals, particularly those who are not specialists in epilepsy, to better understand SUDEP and how the risk of SUDEP can be reduced.