Epilepsy deaths: Learning from health service delivery and trying to reduce risk

Two recent UK reports have highlighted data of concern in relation to potentially preventable epilepsy deaths. Public Health England, an executive agency of the Government Department of Health, using National Health Service data from 2001 to 2014 reported a rise in direct age-standardised mortality for epilepsy-associated deaths, in contrast to a reduction in all-cause deaths over the same period. Premature death was seen in people aged below 50 years, especially in men, and where epilepsy was a contributory cause rather than an association. The Scottish Epilepsy Deaths Study, analysing deaths between 2009 and 2016, similarly found death in those with epilepsy was significantly higher than the matched population below the age of 54, especially between the ages of 16 and 24 (6 times higher). Sudden unexpected death in epilepsy accounted for 38% of epilepsy-related deaths under the age of 45. Both studies found a strong relationship between risk of death and deprivation; we discuss the implications of these and other data for planning service delivery and improving epilepsy care. This paper is for the Special Issue: Prevent 21: SUDEP Summit - Time to Listen.