Report highlights importance of early access to professional support for families affected by sudden epilepsy deaths
A new report published in Epilepsia has highlighted the significance of learning from epilepsy deaths and the importance of early access to professional support for affected families.
The report is part of a wider supplement entitled SUDEP: Time for prevention—evidence and clinical translation, which has resulted from an expert workshop held by Epilepsy Research UK in March 2014, in Oxford. This event brought together approximately 50 international professionals from all areas of SUDEP research, and members of SUDEP Action were among them.
The report: After sudden unexpected death in epilepsy: Lessons learned and the road forward, found that:
- Bereavement from a SUDEP loss is complex and requires specialist support.
- The role of the treating physician following a SUDEP loss includes family support and careful record review when required.
- Mounting evidence supports full disclosure of the risks of epilepsy, including SUDEP, to those affected and their caregivers.
- Well-informed SUDEP education may be a tool in epilepsy self-management and SUDEP prevention.
The report points out that it is essential that bereaved families are supported by those with adequate skills and experience,able to pick up on clues that highlight wider complex issues that can follow such a traumatic experience.It is also necessary that support is provided by staff who can identify a complicated grief reaction and be able to refer people in need of specialised mental healthservices where necessary.
The report also states that participating in research could possibly help the bereaved family’s need to make a difference. It suggests bereaved families can support research by reporting a death to The Epilepsy Deaths Register (EDR). Research teams are working with The EDRas a resource for research into epilepsy deaths. Work on the EDR has now been extended to Ireland in collaboration with Epilepsy Ireland. The register has had over 500 registrations, including Ireland.
Epilepsy ranks in the top ten causes of premature deaths and is potentially avoidable. Many young and healthy people have lost their lives and in the UK more than 3 people die a day.
Also highlighted is the vital need of SUDEP discussion and education as a tool in epilepsy self-management and SUDEP prevention.
SUDEP Action will be taking part in the Partners Against Mortality in Epilepsy (PAME) conference in Washington in June 2016 and will be presenting findings from the EDR in a report which underpins the importance of all these registrations from families.
Karen Osland, who was one of the co-authors commented: “SUDEP Action is the only organisation dedicated to preventing unnecessary epilepsy deaths and supporting the bereaved. Preventing future deaths is a high priority for most families, but this can be difficult given the nature of the bereavement. Participating in research and providing information to the EDR has been a way for many to know that their experience will be used in a way to benefit others.”
SUDEP Action Chief Executive Jane Hanna OBE said:“We welcome this special supplement, which captures all the expert contributions to the 2014 Epilepsy Research UK Expert Workshop on SUDEP. SUDEP research is now a fast moving field of research and workshops like these are incredibly helpful in enabling teams to take stock of what has been published and what is needed. Experts around the world agree on the devastating impact of SUDEP on a family. SUDEP Action was able to present our experience over 20 years in working with bereaved families and the article on the Aftermath is a helpful expert resource on what is understood by us so far about the experiences of families after a death.”
For the full report see Epilepsia
For more on the SUDEP Action support service see: Finding the light – my experience of the SUDEP Action Counselling Service