People bereaved by Epilepsy / SUDEP
Support and information for those who have lost a loved one
SUDEP Action Day is a day to remember all those who have died from epilepsy, including SUDEP, and to raise awareness of the risks, so that lives may be saved.
We invite you to join us on the 18 October 2023.
If you wish to join with us and commemorate the life of someone who has died, you can share a photo and their name via Facebook and Twitter.
If you would like, you can also set up a Much Loved tribute for your loved one as a special place to share thoughts, poems and messages.
While SUDEP Action Day is intended to help shine a light on SUDEP to help raise awareness of the risk of it, we must not forget the pain of grief felt by all those bereaved by epilepsy ~ our thoughts are with you.
We understand that SUDEP Action Day can intensify memories and emotions of losing your loved one. Please know we are here to help and support you in any way we can.
SUDEP Action is the only UK charity specialised in supporting and involving people bereaved by epilepsy, including SUDEP (sudden unexpected death in epilepsy). Our tailored bereavement service helps and empowers people after someone with epilepsy has died, through specialist bereavement support, counselling and casework, including support through investigations and inquests. The support we provide is open-ended and can be accessed at any time after the death. Find out more here.
For dedicated and confidential support, please email [email protected]
Campaigning for Change
After losing someone to an epilepsy related death many go on to raise awareness of the risks associated with epilepsy. Some campaign for better services or visit their health providers with information in the hope that what they do will reduce the number of deaths.
This year’s theme is #mysafetymatters. We know many people with epilepsy still aren’t receiving vital epilepsy risks/ SUDEP information, yet people with epilepsy & their families WANT to be told about SUDEP and epilepsy risks. We also know that many bereaved families were NOT told about SUDEP & wish that this vital information had been shared.
We need to encourage #mysafetymatters so that every person with epilepsy, their families and health professional are not only aware of these risks but are able to take an active role in discussing, reviewing and reducing them.
If you would like to get involved in this year’s campaign you could:
1. Share your story with us – tell us about your loved one, and about why knowing about epilepsy risks and SUDEP is so important. If you’d like to share your story with us as a My Story, part of the SUDEP Global Conversation, or as a case study to help raise awareness, please get in contact.
2. Help research into epilepsy related deaths and bereavement – Could you support this vital research helping experts learn lessons from epilepsy deaths to help save future lives and highlight the needs of people bereaved by epilepsy? Visit the Epilepsy Deaths Register to take part.
3. Raise awareness of SUDEP, epilepsy deaths and epilepsy risks by taking part in one of our #mysafetymatters campaigner tasks.
4. Help us to continue to speak up to save lives by holding a My Way to 5K awareness event.
Don’t forget, you can take part in a special MyWayto5K event throughout October to mark SUDEP Action Day.
Walk, run, cycle, scoot, hike, climb, on the Day, or over a few days in October to mark the day – however you choose to reach your 5K, together we will be remembering and raising vital awareness to help save lives.