Related to this topic: Leaflets | Support | Patient+ | UK Guidelines | Online Videos | News | Weblinks | Poem/Story | Equipment | Books | Glossaries
Print options: 
(tip - pdf print is neatest)
Other options:
(what's this?)
Epilepsy Bereaved
PO Box 112
Wantage D.O.
Oxon
OX12 8XT
Tel: 01235 772 850
Fax: 01235 772 850
Bereavement Contact Line: 01235 772 852
Web: www.sudep.org
Best time to telephone: 24 hour answering service
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.
Disclaimer: Patient UK has no control of the content of the above links. Inclusion does not imply endorsement by Patient UK.
Related pages in Patient UK
Information leaflets related to this topic (^ top of page)
Benefits for Bereaved People Bereavement - A Self Help Guide Epilepsy - A General Introduction Epilepsy - Childhood Absence Seizures Epilepsy - Could It Be? Epilepsy - Dealing With a Seizure Epilepsy - Living With Epilepsy Epilepsy - Partial Seizures Epilepsy - Tonic Clonic Seizures Epilepsy - Treatments Epilepsy and Sudden Unexpected Death (SUDEP)Patient Support related to this topic (^ top of page)
A Different Journey ASSERT - Angelman Syndrome Support Education and Research Trust Association of Children's Hospices Babyloss Bereaved Parents Network Bereavement.org.uk Child Bereavement Charity Childhood Bereavement Network Children's Hospice Association Scotland Compassionate Friends (Bereavement Support) Cruse Bereavement Care CRY (Cardiac Risk in the Young) Epilepsy Action Epilepsy Connections Epilepsy Research UK Epilepsy Scotland Epilepsy Wales Faithfully Yours Jewish Bereavement Counselling Service Joint Epilepsy Council Laura Centre Learn and Live Lone Twin Network MedicAlert® Foundation National Association of Widows National Society for Epilepsy NCYPE - National Centre for Young People with Epilepsy Northumberland, Tyne and Wear Patient Information Centre Pet Bereavement Support Service Rainbow Centre For Children RD4U Ruby Care Foundation (end of life issues) S.C.A.R.D - Support & Care After Road Death & Injury SANDS - Stillbirth And Neonatal Death Society St Elizabeth's Centre Sudden Death Support Association SupportLine Survivors of Bereavement by Suicide UK Epilepsy and Pregnancy Register UK Funerals On--line Way Foundation Winston's WishMedical reference articles in PatientPlus related to this topic (^ top of page)
Epilepsy in Elderly People Managing Epilepsy in Primary CareUK guidelines related to this topic (^ top of page)
Guidelines on EpilepsyOnline videos related to this topic (^ top of page)
Online videos on EpilepsyRecent news items related to this topic (^ top of page)
'Extreme Atkins' diet can treat epilepsy in children Virginia Ironside's Dilemmas Grief really hurtsLinks to other selected websites related to this topic (^ top of page)
Bereavement Epilepsy GriefPoems and stories related to this topic (^ top of page)
Epileptic Seizure (First Aid) Stories to Read in the Waiting Room ... You're Feeling Sad? ... You're Not AloneOther - Useful resources (^ top of page)
Pictures, diagrams, photos, images, etc.Evidence based medicine
Online textbooks and journals
A-Z of UK Guidelines
A-Z of Online Videos
Medline
Other good health sites
Medical equipment products related to this topic (^ top of page)
Medical Bracelets Pill/Tablet Equipment
Books related to this topic (^ top of page)
Bereavment (Coping with) Coping with Bereavment Coping with Epilepsy Coping with Loss: for Parents Epilepsy (Coping with) Epilepsy (Understanding) Epilepsy and Seizures (The Daily Telegraph) Epilepsy and Your Child: Answers At Your Fingertips (2nd Edition) Epilepsy. The Facts Epilepsy: Answers At Your Fingertips (2nd Edition) Epilepsy: British Medical Association's Family Doctor Series Grief (Helping Children Cope with) Grief (Living with) Helping Children Cope with Grief Living with Grief Living with Loss
Want to search some more? Use the Google Search box below to search our site.
Would you like to try our advanced on-line knowledge support system designed to provide professionals with relevant up to date information about recognition and management of disease or take the Mentor Challenge?
Disclaimer: Patient UK has no control of the content of the above links. Inclusion does not imply endorsement by Patient UK.