Still widely cited and used today, the National Sentinel Clinical Audit of Epilepsy-Related Deaths 2002 found:
- significant potential for avoidance of early deaths in epilepsy.
- the investigation of epilepsy-related deaths was poor and hampered progress in learning from the deaths.
In 2002 Epilepsy Bereaved (SUDEP Action) became the first voluntary sector organisation to lead a national clinical audit. The audit raised Key questions about Sudden Unexpected Death in Epilepsy (SUDEP) previously thought too sensitive to tackle. In 2002, all four chief medical officers in the UK welcomed the Epilepsy Deaths Audit as a `landmark report’. The Lancet summarised it as a `wake-up call’ to epilepsy management around the world.
Bringing epilepsy deaths out of the shadows the National Audit report led to improvements in both government policy and professional practice.
National audit of epilepsy deaths 2001
National sentinel clinical audit 2002
Specific guidance on SUDEP NICE guidelines 2004
Royal college of pathologists guidelines
Government Acion Plan on Epilepsy in England
Welsh Assembly Government Service Development Directive for Epilepsy 2009