Epilepsy Bereaved became the first voluntary sector organisation to lead a national clinical audit. Key questions about SUDEP previously asked but thought too sensitive were raised. The Audit’s main finding was the significant potential for avoidance of premature deaths (about 40% of deaths). The Audit also found that the investigation of epilepsy-related deaths was poor, and this hampered progress in learning from the deaths.
The Epilepsy Deaths Audit was welcomed in 2002 by all four chief medical officers in the UK as a `landmark report’, and was summarised in the Lancet as a `wake-up call’ to epilepsy management around the world.
The National Audit of Epilepsy Deaths 2001 FULL REPORT
National Sentinel Clinical Audit of Epilepsy Related Death 2002 SUMMARY
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To date, the Audit has led to:
Specific guidance on SUDEP included in the NICE Epilepsy guidelines 2004
A Government Action Plan on Epilepsy in England
Royal College of Pathologists Guidelines on Autopsy Practice Deaths associated with Epilepsy
Welsh Assembly Government Service Development Directive for Epilepsy 2009
