Epilepsy Bereaved is committed to preventing Sudden Unexpected Death in Epilepsy and other epilepsy deaths through research, awareness and influencing change.
How we can help you
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.
Core to the work of the charity is providing information and support to bereaved families, friends and carers who have lost a loved one through epilepsy.
If you have lost a loved one to epilepsy, please contact our bereavement support line. The team offer support and information which could help. Tel; 01235 772 852 contact@epilepsybereaved.org.uk
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.
;;
Jane Hanna awarded OBE
Tributes have been paid from around the world to Epilepsy Bereaved Director Jane Hanna who was awarded an OBE in June 2010 for her services to bereaved families.
New in-depth investigation published into Sudden Unexpected Death in Epilepsy (SUDEP)
Though it is one of the most common causes of death in epilepsy patients, SUDEP is still infrequently and even reluctantly named on autopsy reports.
Sudden Unexpected Death in Epilepsy Forensic and Clinical Issues reviews the basic science of epilepsy as it relates to SUDEP.
Adopting a global, multidisciplinary focus to address the mystery of SUDEP, this important work provides clinicians, researchers, patients and families with the knowledge to freely discuss the phenomenon and thereby discover the preventive treatment regimes to decrease the occurrence of SUDEP.
Jane Hanna and Dr Rosie Panelli have contributed on the challenges in overcoming ethical and legal communication barriers in SUDEP.
Information on how to obtain a copy of Sudden Unexpected Death in Epilepsy Forensic and Clinical Issues
