Epilepsy Bereaved

PO Box 112
Wantage D.O.
Oxon
OX12 8XT

Tel: 01235 772 850
Bereavement Contact Line: 01235 772 852
Web: www.sudep.org

Epilepsy Bereaved was founded in 1993 and gained charitable status in 1995. It was established to support and inform individuals who have been directly affected by epilepsy and sudden death. Epilepsy Bereaved aims to raise awareness of epilepsy and sudden death (SUDEP) and promote research into SUDEP. Epilepsy Bereaved is campaigning in the following areas:

• Uniformity in death certification of epilepsy and sudden death.
• Acknowledgement of the risk to life carried by epilepsy in order to allow a doctor to take sudden death into consideration in clinical management and to allow the patient to make informed decisions when contemplating treatment options.
• To improve epilepsy services and increase research on SUDEP.

Initiatives that the group has developed include the following:

• Commissioned by Government to undertake a National Sentinel Clinical Audit into Epilepsy Deaths (UK-wide).
• SUDEP aware in primary care - a resource pack for GPs.
• A family support worker available to families affected by epilepsy and sudden death.
• A national support group meeting each year and regional meetings throughout the year.
• Production of a news magazine three times a year.
• Convening, in 1996, the first major international workshop on epilepsy and sudden death.
• An education and awareness manger to support members who want to become volunteers for the charity, (funded by the big lottery).
• A dedicated outreach worker for Wales.

A booklet entitled 'Epilepsy and the Young Adult' has been written by a trustee in memory of her son and all who have died through epilepsy which is supplied free to GPs, specialist nurses, hospital trusts and health authorities.

The Charity has also produced a leaflet called ‘Epilepsy Be Safe Reduce Risk’ in conjunction with the Joint Epilepsy Council.

Please contact for further information.