Founded in 1993, Epilepsy Bereaved (EB) is the leading voluntary organisation in the UK and internationally working to prevent unnecessary deaths from Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy deaths.
The risks of SUDEP and other epilepsy deaths are still not fully acknowledged. This means that people with epilepsy are still at risk of dying suddenly, prematurely and unnecessarily. Without Epilepsy Bereaved, awareness of SUDEP and epilepsy related deaths would be minimal.
EB is dedicated to research and the prevention of Sudden Unexpected Death in Epilepsy and other epilepsy related deaths.
EB is the only charity dedicated to the support and enablement of those bereaved in this way. This essential service breaks the isolation that families and friends experience following SUDEP or other seizure related deaths.
Prevention
Sudden Unexpected Death in Epilepsy (SUDEP) is a rare event with no one cause identified.
Research has produced evidence of the main risk factors for Sudden Unexpected Death in Epilepsy (SUDEP). For example, in a study conducted in 1999, people who had not been seizure-free in the previous year were reported to have had a 23-fold increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) compared to people with fully-controlled seizures. Furthermore, the risks increased with increasing seizure frequency.
Reviews of a large number of research studies since then have confirmed the strong association between Sudden Unexpected Death in Epilepsy (SUDEP) and seizures.
Medical knowledge of the epilepsies has improved greatly over the years and effective treatments have been developed yet the provision of services and access to them has never been adequate.
The most significant risk factor for SUDEP is the occurrence of seizures involving a loss of consciousness. Therefore the better seizures are controlled, the more the risk is minimised.
The NICE National Sentinel Audit of Epilepsy Related Death led by Epilepsy Bereaved drew attention to this important problem. The Audit revealed that; 42% OF DEATHS WERE POTENTIALLY AVOIDABLE.
Research into the cause and prevention of SUDEP continues to be urgent. Eight years on from the Audit, our understanding of sudden death in epilepsy is greater, but we still need to reduce the number of such deaths.
We must continue to promote research into this neglected medical syndrome.
Key facts
- There are approximately 1,000 deaths from epilepsy each year in the UK. That is 3 people every day. More than 500 are attributed to Sudden Unexpected Death in Epilepsy (SUDEP). This is greater than the average annual number of cot death and AIDS cases combined.
- 1 in 130 people in the UK have some form of epilepsy.
- EB led the National Sentinel Clinical Audit of Epilepsy–Related Death in 2002. This revealed that 42% of these deaths were potentially avoidable.
- The report also revealed that people with epilepsy have a risk of premature death that is 3 times higher than that of the general population.
- 79,000 people with epilepsy in the UK are having seizures that could be prevented.
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We aim to influence clinicians, health managers and politicians to implement the service changes needed to reduce risks of Sudden Unexpected Death in Epilepsy and other epilepsy related deaths.
Our Manifesto for Life and Action Plan for MP’s are focused on the prevention and management of avoidable deaths.
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What we do
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