SUDEP Action works to prevent deaths from epilepsy. It is a reporting and support centre for all epilepsy deaths. The charity is the leading voluntary organisation in the UK and internationally on Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths. SUDEP is when a person with epilepsy dies suddenly and unexpectedly and no other cause of death can be found at post-mortem. SUDEP Action works with leading experts to reduce unnecessary deaths from epilepsy through research education and awareness.
We hold 5 one day meetings per year throughout the UK and hold 1 national weekend in March (Friday-Sunday) at the Dunchurch Park Hotel near Rugby where there are opportunities to meet others, meet the charity staff and trustees, hear about latest research and to ask questions of experts in the field of epilepsy
There are five key strands to our work:
• Providing information on SUDEP and risk in epilepsy
• Providing support to individuals who have been affected by an epilepsy related death
• Involving people to effect change
• Sponsoring research and education to prevent future deaths
• Capturing data through The Epilepsy Deaths Register.
The Epilepsy Deaths Register was launched in March 2013 and is already a rich source of information. SUDEP Action works with leading researchers aiming to understand more about epilepsy mortality and about events leading up to a death. More research is vital to the understanding of premature death if we are to reduce the numbers of early deaths. And, by studying the information provided to the register treatment gaps will be identified and highlighted as a way of promoting better care for people with epilepsy.
The Epilepsy Deaths Register is the only single point for reporting all epilepsy related deaths. To help reduce deaths and improve services. Please tell us about any death of someone with epilepsy, whatever the cause, your information is confidential.