SUDEP Action

SUDEP Action is a UK charity focused on stopping preventable deaths in epilepsy, including Sudden Unexpected Death in Epilepsy (SUDEP), raising awareness, working to save lives and supporting individuals and families bereaved by epilepsy.

We have a specialist epilepsy bereavement service freely available to anyone bereaved by epilepsy, offering telephone support and counselling together with casework and advocacy to answer questions and help navigate through inquests and investigations. 

Our Epilepsy Deaths Register offers bereaved families and professionals an online platform to share their experiences and contribute to an invaluable resource for researchers.  It is the largest collection of information on epilepsy deaths in the world.

The EpSMon app is a digital self-monitoring tool that helps people with epilepsy track their condition and monitor their risk in between visits with their health professional, so intervention can be sought if their risks are escalating. The app is supported by the NHS Innovation Accelerator Programme and has received awards from the BMJ (2016 & 2019) and HSJ Patient Safety (2016).    

Our SUDEP Action Seizure Safety Checklist is an evidence-based tool supporting clinicians in discussing, monitoring, and managing risk with their epilepsy patients. It includes the latest information and research on risk factors associated with epilepsy mortality, including (but not restricted to) Sudden Unexpected Death in Epilepsy (SUDEP). Developed by SUDEP Action & Cornwall Partnership NHS Foundation Trust, the Checklist has received awards from the BMJ (2016 & 2019) and HSJ Patient Safety (2016). Research has demonstrated standardised, regular use of the Checklist has resulted in reduction of risks among people with epilepsy known to be at risk in previous appointments.  

We campaign for better practices and policies related to epilepsy and epilepsy mortality, working to ensure that epilepsy is recognised as an important issue in healthcare and that resources are available for prevention and education. And we lead and fund research into epilepsy deaths, SUDEP, epilepsy risks and epilepsy bereavement – learning from deaths and growing our understanding of risk and prevention.

By representing the voices of those who have died and who are bereaved, we learn from deaths, and use research, policy and campaigns to raise awareness & take action that helps save lives.

Address: 18 Newbury Street, Wantage, Oxfordshire, OX12 8DA

Tel: General enquiries: 01235 772 850 / Bereavement support team: 01235 772 852

Email: General enquiries: [email protected] / Bereavement support team: [email protected]

Website: www.sudep.org

Facebook: www.facebook.com/SUDEPAction.org/

Instagram: www.instagram.com/sudepaction