EPILEPSY BEREAVED?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 in order to help bereaved families in
the following ways: - Secure acknowledgement that people do die from epilepsy.
- Provide an explanation for the sudden death.
- Prevent the same tragedy happening to someone else.
Epilepsy Bereaved? is campaigning for the following: - 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.
Initiatives that the group has developed include: - A family support worker available to families affected by epilepsy and
sudden death
- Three or more national support group meetings a year
- Production of a news magazine three times a year
- Convening, in 1996, the first major international workshop on Epilepsy and
Sudden Death.
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. Please contact for further information.
Epilepsy Bereaved?
PO Box 112
Wantage D.O.
Oxon
OX12 8XT  01235 772 850
 01235 772 852
 http://www.dspace.dial.pipex.com/epilepsybereaved/
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