Pathologist partnership promote good practice for epilepsy bereaved families

New guidelines published by the Royal College of Pathologists last month, seek to better support pathologists in investigating epilepsy related deaths.

Working in collaboration with SUDEP Action, the new 2019 guidelines indicate significant progress is being made in understanding when deaths should be recognised as epilepsy-related. Particularly with sudden unexpected death in epilepsy (SUDEP), there is a unified international definition and development of investigation techniques.  

The Royal College of Pathologists produced the first good practice guidelines into the aftermath of epilepsy deaths in 2004. This followed SUDEP Action’s National Audit of Epilepsy Deaths in 2002, which found only 10% of epilepsy deaths being recorded as SUDEP at that time, and 87% of deaths investigations were inadequate.

The collaboration was strengthened at the charity’s Prevent21 Summit in 2018, when 43 organisations, including the Royal College, convened to support SUDEP Action’s mission to stop 21 deaths a week from epilepsy.

Jane Hanna OBE, CEO of SUDEP Action said,

“We are delighted to work with the Royal College. The guideline update sets out latest good practice taking account of research developments on when a death should be considered a SUDEP, or possible SUDEP, or an epilepsy-related death from whatever cause. It also recognises that families may wish to contribute to the Epilepsy Deaths Register.  It is the first guideline to properly recognise the needs of families in the aftermath of a death by encouraging coroners and pathologists to signpost bereaved families to SUDEP Action early on, when families will be facing a bewildering world of coronial investigation.  We look forward to working with the College to take on the challenge of ensuring the guideline is used as much as possible in everyday practice.”  

For more information

SUDEP Action's tailored bereavement service supports people after an epilepsy related death. The service is led by what the bereaved tell us they need and want - which includes advocacy, information, advice and involvement in research, through The Epilepsy Deaths Register.

SUDEP Action can also assist and empower families in their interactions with the coronial service and other agencies, this can be combined with ongoing support.

If you would like to access the services, contact [email protected] or call 01235 772852.