If someone you know has died from an epilepsy related death, you might be looking for support and information. We know that everyone’s experience is different and there is no right or wrong way to grieve. There are many different tools and organisations available to support you.
If you would like to talk to someone about epilepsy you can call the Epilepsy Action Helpline on 0808 800 5050.
SUDEP Action exists to increase awareness of epilepsy risks and tackle all epilepsy deaths, including Sudden Unexpected Death in Epilepsy (SUDEP). With over 20 years’ experience, it is the only UK charity with specialist expertise in supporting and working alongside anyone bereaved by epilepsy. The free support service is tailored, led by what the bereaved need and want - which can include advocacy, information, advice and involvement including in research through The Epilepsy Deaths Register. SUDEP Action can assist and empower the bereaved in their interactions with the coronial service and other agencies, which can be combined with ongoing support.
Child Bereavement UK
Cruse Bereavement Care
The UK government can sometimes help with funeral costs in certain circumstances.
GriefChat is an online chat service that is part of Professional Help Limited. It provides online emotional support, access to trained bereavement counsellors and referral into other specialist bereavement services. Find out more.
Help is at Hand
The Support after Suicide Partnership has produced a document called Help is at Hand, which is an information guide for anyone bereaved by suicide.
The Epilepsy Deaths Register
The Epilepsy Deaths Register provides researchers with anonymised information on epilepsy deaths. You don’t need to be related to the person who has died, and you can register their death at any time.
Provides practical help to people who are struggling financially.
Epilepsy Action would like to thank Dr Heather Angus-Leppan, consultant neurologist and epilepsy lead, Royal Free London NHS Foundation Trust, for her contribution to this information.
This information has been produced under the terms of Epilepsy Action's information quality standards.
- Updated August 2019To be reviewed August 2022