SUDEP Action

Making every epilepsy death count
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Vital grant received will help better support epilepsy bereaved families

MCF visit


*Pictured L-R: Jane Hanna OBE (SUDEP Action CEO), Adrian Barlow (MCF), Mark Phillips (SUDEP Action Trustee)

People who have been bereaved by epilepsy will be given practical and emotional support, from SUDEP Action, thanks to a £4,000 grant from Oxfordshire and Berkshire freemasons.

Epilepsy, one of the most serious neurological disorders, is responsible for 21 UK deaths a week, with 42% of these deaths being identified as avoidable. The most common cause is from Sudden Unexpected Death in Epilepsy (SUDEP). People bereaved by epilepsy are often left traumatised by the sudden and unexpectedness of an epilepsy related death. Traumatic bereavement itself can have a long lasting effect, with many going on to suffer poor mental health for many years.

SUDEP Action, based in Wantage, will be using the grant to help fund a bereavement case worker to support these people. The new case worker will provide a bespoke service in the immediate aftermath of an epilepsy related death, which includes advocacy, information and advice. They can also assist the bereaved with their interactions with the coronial service, and other agencies; this unique service is combined with ongoing support.

Approximately 300 epilepsy related deaths have occurred just in Oxfordshire, since SUDEP Action started in 1995.  The grant from Oxfordshire and Berkshire Freemasons comes through the Masonic Charitable Foundation (MCF), which is funded by Freemasons, their families and friends, from across England and Wales.

Jane Hanna OBE, CEO at SUDEP Action, said: We’re very grateful to Oxfordshire Freemasons for their generous grant. It will help bereaved people maintain control of their lives, reduce trauma and meet their needs for answers, with a view to preventing future deaths.”

James Hilditch, Head of Oxfordshire Freemasons, said: "I’m very pleased we’ve been able to support SUDEP Action. They do truly outstanding work raising awareness of epilepsy risk and supporting people bereaved by epilepsy."

SUDEP Action work to prevent future deaths and support families who lose a loved one; receiving no Government funding for this work.


If you have been bereaved by epilepsy contact our support team on [email protected] or call 01235 772852