Sudden Death and Epilepsy - The Views and Experiences of Bereaved Relatives and Carers
Report 2002: A qualitative study conducted in parallel with the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Catherine Kennelly & Jacquie Riesel)
The aim of this project was to review health services for investigation of death from relatives' and carers' perspectives to highlight issues that they themselves had identified as important in order to make recommendations on how the needs of people with epilepsy and their carers before and after death can be met in the future.
The report concluded that, bereaved relatives are understandably shocked by the death of a family member with epilepsy. Before the death they often feel excluded, and afterwards abandoned, by medical professionals and people investigating the death. They want epilepsy services to be patient and carer centred, and would like to be actively informed, included and involved in the planning and provision of the patient’s care and treatment and in the process of investigation into death. Relatives and carers are valuable resource, and many epilepsy services have a long way to go before they recognise their role and utilise them to help make improvements in medical care and treatment.