About SUDEP Action
At least 21 epilepsy-related deaths each week in the UK – at least 42% of these are known to be potentially avoidable.
SUDEP Action exists to increase awareness of epilepsy risks and tackle all epilepsy deaths, including Sudden Unexpected Death in Epilepsy (SUDEP).
The only UK charity supporting and working alongside those whose loved ones have died suddenly from an epilepsy related death. Services include free bereavement support, counselling and help with understanding the inquest process.
The dedicated support service is tailored, led by what the bereaved need and want – which can include advocacy, information, advice, and involvement in research through The Epilepsy Deaths Register. The support service can also assist and empower families in their interactions with the coronial service and other agencies, this can be combined with ongoing support.
(Our team do also support a number of international families)
Support team – [email protected] or 01235 772852
Free safety tools
SUDEP Action provide free award-winning tools, information and resources are provided to clinicians and people with epilepsy. The charity’s core services have been recognised as best practice examples for ‘taking a risk management approach to mortality’:
- SUDEP & Seizure Safety Checklist for clinicians to discuss and review epilepsy risks with their patients so potentially life-saving interventions can happen
- EpSMon app, helping people with epilepsy to quickly monitor any changes to their condition and wellbeing in-between appointments
- Epilepsy Deaths Register, helping learn vital lessons from information shared on epilepsy deaths by involving the bereaved in research
Resources and further information
For more information pages on epilepsy and risk have key info to help with understanding what maybe a risk and how to take steps to reduce them.
Access free downloadable information and advice for those living with epilepsy, their families, carers, clinicians and for the bereaved.
Contact [email protected] for more information.
SUDEP Action produce a range of free resources for People with epilepsy, clinicians, families, researchers and those bereaved by epilepsy. Including:
- SUDEP and Seizure Safety Checklist (for clinicians)
- EpSMon app (for people with epilepsy)
- Leaflets and downloads
- Prevent21 Reports and internationally published Research Summaries
- My Story – in memory of those who have died
- Specialist bereavement services and support