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Family and friends not aware of risks of epilepsy related deaths - research finds

Research gathered from an online survey of people bereaved by epilepsy was presented in a poster at the 10th Asian Oceanian Epilepsy Congress in Singapore in August. Titled ‘Epilepsy-related deaths: an Australian survey of the experiences and needs of people bereaved by epilepsy’, the authors were Dr Michelle Bellon, Dr Rosey Panelli and Dr Fiona Rillotta.

Dr Bellon says: "the poster presented findings that indicate many family and friends surveyed were not aware of the risks of epilepsy related deaths."

"In spite of increased acknowledgment by medical professionals to discuss risks, there is need for further information and open discussion on epilepsy-related death (particularly SUDEP), and increased access to appropriate grief and loss support and counselling, peer support for bereaved family and friends, and follow-up from health professionals and other services.”

Dr Rosey Panelli, SUDEP Action’s International Research Officer noted that a UK study sponsored by SUDEP Action in 2002 also investigated the experiences of relatives and carers bereaved by epilepsy. 

"Although the studies differed in their methods many of the concerns identified in the UK have been echoed in Australia in 2014," Dr Panelli. The authors hope to have their results published in full in the coming months.

See survey poster below:


PDF icon Bereaved survey poster