PARLIAMENTARY WRITTEN QUESTION
(19 June 2025)

At a national level, there are a number of initiatives supporting service improvement and better care for patients with epilepsy, including the RightCare Epilepsy Toolkit, the Getting It Right First Time Programme for Neurology, and the Neurology Transformation Programme.

One of the key focuses of the RightCare Epilepsy Toolkit is reducing epilepsy-related deaths, including Sudden Unexpected Death in Epilepsy (SUDEP). The toolkit includes several recommendations regarding 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.

National Institute for Health and Care Excellence guidance on epilepsy recommends that clinicians should discuss the risk of SUDEP with patients newly diagnosed with epilepsy and ensure their understanding of the risk.