EPILEPSY BEREAVED ?

(REGISTERED CHARITY NUMBER : 1O5O459)

If you would like further information about S.U.D.E.P. or the charity or would like to help us, please write to us at P.O. Box 1777, Bournemouth BH5 1YR.

Why We Exist

In 1996, over 1,OOO people died from epilepsy in the UK. Some of these deaths are attributable to accidents. The majority of these deaths, however, were not accidental, but were the result of a seizure itself. Most of the people who have died are young people who, although in otherwise good health, died suddenly, usually in their sleep. This is known as Sudden Unexpected Death in Epilepsy or S.U.D.E.P

S.U.D.E.P is often likened to an adult cot death. Surprisingly to many, the numbers of people dying from epilepsy is the same as the combined mortality figures for cot deaths and HIV. Further, we simply do not know why some people die during or after a seizure.

Most people have heard about cot deaths and HIV. Both have received much attention and as a result have generated research and changes in practice. Most people have not heard about S.U.D.E.P, including many people living with epilepsy. Although epilepsy has been known to be with us since Alexander the Great, S.U.D.E.P was only first acknowledged as happening in 1868 and then was promptly forgotten again for well over a hundred years.Few people were prepared to acknowledge or discuss the problem.Only now is the subject being recognised.

Epilepsy Bereaved ? is a registered charity which grew out of a self-help group of bereaved families which formed in the early 199O's. The use of the question mark after our name was to challenge those who would deny that people died from epilepsy and to highlight the fact that so little was actually known about the subject. In 1996 these families launched a charity during a service of remembrance to all those who had died from epilepsy and who had been forgotten.

WHY WAS S.U.D.E.P FORGOTTEN ?

During the 19th century, medical specialists wrote in leading journals about the risk of Sudden Unexpected Death in Epilepsy (S.U.D.E.P.). This was a time when epilepsy was viewed as a terrible illness. We know that many people with epilepsy were kept in asylums away from the community and suffered tremendously from the prejudices which surrounded the subject.

It was understandable that when new antiepileptic drugs became available during the 2Oth century that people with epilepsy became anxious to live as normal and independent a life as possible. For this to be possible, it became essential for those concerned with epilepsy to tackle the ignorance and stigma in the general community. Perhaps in an attempt to maximise the independence and normality of life for people with epilepsy, the risks were minimised and then denied. It soon became common knowledge that seizures could not be fatal.

It is now time that the balance is redressed. People with epilepsy can live independent and normal lives, but the denial of risk from the condition can only do people with epilepsy a disservice in the end. It has already done so for all the thousands of people in the UK who have died in the past without acknowledgement or concern for why they died. Further, the trauma of the bereaved families has been exacerbated by the misinformation about S.U.D.E.P. and the lack of concern about their loved one.

The Neglect of S.U.D.E.P. only mirrors the neglect of epilepsy itself.

As one mother wrote to us soon after her son died :

"No one knows why Simon died because, although epilepsy is the most common neurological brain disorder in the world, it is also the most neglected."

Epilepsy affects 1.5 million people in the UK at some time in their lives, especially during childhood and old age.

The illness attracts little by way of research money - out of the UK's annual £2 billion medical research budget only £336,OOO is spent on epilepsy. This is less than £1 per person with epilepsy and compares unfavourably with the £25O per person with muscular dystrophy and £14O per person with multiple sclerosis.

The high prevalence of epilepsy, and its largely ignored death rate, social impact and stigma should mean that proper treatment ate high priorities for any health service. Yet is well accepted that epilepsy remains a Cinderella service in many parts of the UK. A recent survey of health managers in the UK revealed that only 5% had set service standards for epilepsy.

It is well established that 4O% of people with epilepsy are only seen by general physicians who have no specialist training in neurology.

The Aims of Epilepsy Bereaved?

work towards the prevention of these tragic deaths through promotion of research and raising awareness.
inform and support bereaved people directly effected by the syndrome.

Epilepsy Bereaved is a member of the Joint Epilepsy Council and works closely with other epilepsy organisations in the UK. We have the support of many epilepsy specialists, both inside and outside the UK. In 1996, 227 members of Parliament signed a motion congratulating the work of the charity. We recently received a grant from the Department of Health to pay for one part-time position. Most of the work of the charity is done by dedicated volunteers who have been bereaved because of epilepsy.

Our Achievements

Championed the issue of sudden unexpected death in epilepsy, previously unacknowledged by any UK organisation. Our conception and organisation of the first major international gathering of world scientists in London in 1996 has led to an important international scientific publication. In 1997 we addressed doctors and nurses at a number of conferences including delegates at the Epilepsy World Congress in Dublin organised by the International League against Epilepsy

Collaborated with the Epilepsy Research Foundation to fund the first research fellowships into Sudden Unexpected Death in Epilepsy.

the first and only UK organisation to provide a range of free support services to families bereaved through epilepsy through information, advice, news magazines and support group meetings.

1O,OOO free information booklets entitled `Epilepsy and the Young Adult' distributed to young people living with epilepsy.

Our Plans...

to campaign for a national confidential enquiry into Sudden Unexpected Death in Epilepsy.

to establish a telephone help-line for families

to continue to support research projects in to Sudden Unexpected Death in Epilepsy.

If you would like further information about S.U.D.E.P. or the charity or would like to help us, please write to us at P.O. Box 1777, Bournemouth BH5 1YR.

Every reasonable effort has been taken by Epilepsy Bereaved? to ensure the accuracy of the content, but no responsibility can be taken for any error or omission. The opinions of the contributors do not necessarily reflect the views or policies of the charity, nor does the inclusion of an item constitute a recommendation.

All material is copyright of Epilepsy Bereaved? Permission to use any of the material should be sought via the Director, Epilepsy Bereaved?,P.O. Box 1777, Bournemouth BH5 1YR.