In light of Sheriff Duff's fatal accident inquiry report on the sudden epilepsy-related deaths of two teenagers, what action it will take t…

We expect clinicians to follow Scottish Intercollegiate Guidelines Network (SIGN) guidelines in Scotland where clinically appropriate. The guidelines recommend that Sudden Unexpected Death in Epilepsy (SUDEP) should be discussed, except in the minority of circumstances where the clinician may judge that it may cause serious harm to the patient. As no single approach will suit all patients, the discussion about SUDEP is a clinical judgment in the context of individual circumstances, and in agreement with the patient and their carers, where relevant.
If a clinician decides not discuss the risk of SUDEP with patients, the decision should be regularly reviewed and the subject of SUDEP raised at the appropriate time, recording the outcome of discussions in the patient’s clinical records as recommended by the General Medical Council.
We have agreed to provide Epilepsy Scotland with funding to conduct research into the information needs of people with epilepsy regarding SUDEP. The research aims to identify at what point post-diagnosis, individuals would prefer to receive information on SUDEP and in what form. Equally important is to identify who they would prefer to receive the information from; their consultant or epilepsy specialist nurse. The findings of the research will help support healthcare professionals in the vital process of sharing information with people at risk of SUDEP.
Recommendations from the fatal accidents inquiry report should be considered and acted upon by those responsible for delivering healthcare services, such as NHS boards. The Chief Professional Officers Groups at the Scottish Government also consider such recommendations and provides advice to clinicians and boards.