SUDEP Action

Making every epilepsy death count
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National Audit of Epilepsy-Related Deaths 2002

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.


PDF iconNational audit of epilepsy deaths 2001


PDF iconNational sentinel clinical audit 2002


PDF iconLancet commentary


PDF iconSpecific guidance on SUDEP NICE guidelines 2004


PDF iconRoyal college of pathologists guidelines


Government Acion Plan on Epilepsy in England

Welsh Assembly Government Service Development Directive for Epilepsy 2009