About Epilepsy Bereaved (registered charity number 1050459)
Founded in 1993, Epilepsy Bereaved (EB) is the leading voluntary organisation in the UK and internationally working to prevent unnecessary deaths from SUDEP (Sudden Unexpected Death in Epilepsy) 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 maintains a strong focus on SUDEP and other epilepsy related deaths and is dedicated to research to prevent SUDEP 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.
‘If I had known about the risks of Daren dying from Epilepsy we may have been able to take precautions to prevent it. No mention was ever made to us that Daren’s life could be at risk even when he was in and out of hospital at one stage. So much more needs to be done to make people aware of the risk that Epilepsy brings to your life and we need much more research into prevention.’ Karen, whose husband died aged 32.
‘I am so grateful you returned my call when you did. No one else out there was offering any help and support and I was so lost’. Teri, who lost her partner Mark, aged 41.
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 SUDEP. This is greater than the total number of AIDS related deaths annually.
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.
What do we do?
EB provides a contact line enabling people who have been bereaved by epilepsy related deaths to get initial support and information. Currently there are over 1,000 calls per annum.
EB provides support to people individually and the opportunity to meet each other in regional peer support groups. Last year EB hosted two national and six regional meetings. In addition, EB provides opportunities for bereaved families and others to become involved in our work. Last year, EB enabled over 300 people to take part in campaigning for improved epilepsy services along with fundraising activities.
EB lobbies clinicians, heath managers and policy makers with the aim of raising awareness and ultimately reducing the risk of epilepsy related death. For example, last year EB influenced over 230 + health care professionals, clinicians & policy makers.
EB carries out and supports research into the causes of SUDEP and other epilepsy deaths. We are currently working in partnership with Kings College Hospital London with the aim of finding ways to prevent SUDEP and other epilepsy deaths.
Key achievements
EB was the first voluntary organisation to conduct a UK wide National Clinical Audit. This was the first national and international report to address the preventability of SUDEP deaths. As a direct result, SUDEP is now recognised as a syndrome by national and local policy makers. In addition, SUDEP has been highlighted in health professional journals and in the NICE epilepsy guidelines on best practice for health professionals.
Led the way to the England Government’s first action plan on epilepsy in 2003, and the Welsh Assembly’s Commissioning directive for Epilepsy in 2008.
Broken the isolation of people bereaved by SUDEP and epilepsy deaths through the establishment of specialist bereavement information and support services.
Acted as a catalyst and model for campaign and family support work on SUDEP in Ireland, Australia, USA, Canada and Europe.
Worked as a partner with the Royal College of Pathologists to improve investigation and management of epilepsy deaths. This included national guidelines on epilepsy related death and training of pathologists on sudden death and the young in 2006.
‘Twelve years of sustained campaigning to influence decision makers has seen a seismic shift in thinking and practice on SUDEP in the UK. But we remain urgently concerned that prevention strategies are not being implemented and that young people are dying as a result.’ Jane Hanna: Founder member - Epilepsy Bereaved.
Head office: Epilepsy Bereaved, PO Box 112, Wantage Oxfordshire. Tel 01235 772850.
