Please note that this information has been extracted from the SUDEP Action website:
Epilepsy is a complex condition which can be difficult to understand. There are risks associated with the condition, which means there is a need for accurate, up-to-date information. SUDEP Action works closely with researchers and specialists in the field so that we can provide it.
Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. It is not a condition or disease, but rather a useful category to aid research and monitoring of deaths.
At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important:
• To prevent deaths
• To be supported
• To be involved
We have won national and international honours for our achievements to date, but we recognise there is much more work to do.
There are five key strands to SUDEP Action's work:
• Providing information on SUDEP and risk in epilepsy
• Offering support when someone has died
• Involving people to help effect change
• Sponsoring research and education to prevent future deaths
• Capturing data across the UK through the Epilepsy Deaths Register
For more information on SUDEP Action, please visit their website.
Who to contact
Where to go
- SUDEP Action
12a, Mill Street
- OX12 9AQ
- Age ranges
- 16 and upwards (under 16 are welcome to our meetings with an adult)
- Referral details
Anyone can access the service - telephone or email is preferred
- Local/National Service?