Epilepsy Bereaved is committed to preventing Sudden Unexpected Death in Epilepsy and other epilepsy deaths through research, awareness and influencing change.
The charity supports about 100 newly bereaved people each year along with providing support to over 1,000 people.
The support we provide ranges from requests for epilepsy related information and peer group support for people affected by bereavement, to more complex information requests on Sudden Unexpected Death in Epilepsy and information following a sudden death from epilepsy.
The charity is advised by a panel of epilepsy experts and specialist pathologists. We therefore have access to information to assist the bereaved to understand the cause of death. Our scientific panel members also help us to produce information resources.
For professionals supporting people with epilepsy
Epilepsy Bereaved has produced a range of resources for professionals to assist you in helping people with epilepsy to gain a balanced understanding of the risks they face.
We have joined forces with four national epilepsy charities to develop ‘Taking the Tablets’ - an information DVD on the importance of taking anti-epileptic medication.
In addition to our leaflet Be Safe Reduce Risk leaflet which aims to inform people with epilepsy about the risks associated with the condition (A new version of the risk leaflet will be avalable in August 2010- please contact us for copies)
EB has also collaborated with Epilepsy Scotland, Brainwave and the All Wales Epilepsy Forum in producing a SUDEP information booklet
Our risks leaflet is particularly helpful for informing people if they are making important decisions about their treatment and life-style.
For professionals supporting people following a sudden death
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 know of someone who has lost a loved one to epilepsy, please tell them about the bereavement support line. The team offer support and information which could help them through their very distressing time. 01235 772 852 contact@epilepsybereaved.org.uk
Resources for professionals following a sudden death
National Reports on Epilepsy Deaths
Epilepsy Bereaved became the first voluntary sector organisation to lead a national clinical audit. Key questions about Sudden Unexpected Death in Epilepsy previously asked but thought too sensitive were raised. The Audit’s main finding was the significant potential for avoidance of premature deaths (about 40% of deaths). The Audit also found that the investigation of epilepsy-related deaths was poor, and this hampered progress in learning from the deaths.
The Epilepsy Deaths Audit was welcomed in 2002 by all four chief medical officers in the UK as a `landmark report’, and was summarized in the Lancet as a `wake-up call’ to epilepsy management around the world.
Other investigations on epilepsy deaths
There is no national monitoring of epilepsy deaths, but other investigatory bodies continue to highlight the issues identified in the 2002 Audit;
Epilepsy Bereaved Briefing for Commissioners of Epilepsy Services 2010
Please contact us if you wish to order hard copies of our resources.
