Epilepsy and sudden death: a personal view.

Epilepsy Bereaved? is a charity that aims to inform, support, and empower partners, relatives, and friends of people affected by sudden unexpected death in epilepsy (SUDEP). It also works toward preventing mortality due to SUDEP through raising awareness and promoting research. The aim of Epilepsy Bereaved? is to enable bereaved families to be heard. The charity represents more than 200 families in the United Kingdom and overseas. This article presents some of their experiences. All the deaths involved young people, many of whom had been recently diagnosed with epilepsy or had experienced only infrequent seizures. Their families report that they have been unaware of the risk for sudden death. Explanations and counseling from health professionals were rare. This was often felt by families of the victims to be symptomatic of a continuing failure to provide adequate information and support to people with epilepsy. In many cases, distress was exacerbated by the belief that death certificates were inaccurate. In supporting this workshop, Epilepsy Bereaved? hopes that further progress will be made to prevent deaths and suffering from this tragic syndrome.