In 1996 a study of the information on epilepsy given to newly diagnosed patients (Preston 1997) discovered that rarely, if ever, was the risk of SUDEP mentioned.

In 2005, in the UK, all the major epilepsy charities are now prepared to talk about the topic; some have their own literature, others use information produced by Epilepsy Bereaved. The most commonly used leaflet is ‘Epilepsy – Be safe, reduce risks’ which is a leaflet written by all the epilepsy organisations in the UK and Ireland under the umbrella of the Joint Epilepsy Council. The idea that all the epilepsy charities in the UK would band together to produce literature on such a taboo topic would have been unimaginable in 1996.

The biggest change in the last ten years has been the growth of the internet. A SUDEP search produces 13700 mentions, more than 20 pages.

With a few clicks of the mouse one can browse through research papers from all over the world, reports from conferences, Epilepsy Bereaved’s specialist SUDEP site, guidelines from the medical profession, chatrooms, and the broad spectrum of information presented by epilepsy charities, treatment centres and consumer pages such as the ‘Crazy Meds Guide to SUDEP’. It is important to remember that although web-based information is now relatively easy and cheap to access, it is not always correct.

A bookshop search uncovers very few publications about epilepsy. Those that are on sale have been slow to reflect the current SUDEP knowledge available and some still do not mention SUDEP at all. A list of recommended titles is included in Epilepsy Bereaved’s booklet ‘Epilepsy and the Young Adult’. The first edition of this booklet published in 1996 was the only booklet written at that time which covered sudden death.

Most physicians, consultants, and specialist epilepsy nurses now agree that it is better to cover the slightly increased risk of a sudden death in epilepsy in the same way as they would with asthma or diabetes. Patients, or their carers, are entitled to know the facts about their condition so that they can make informed decisions. Epilepsy Bereaved in cooperation with the Royal College of Nursing has produced a facts sheet for doctors – SUDEP Aware in Primary Care – to help them do this. Literature is not always the most suitable way to cover the subject. Often a doctor or nurse, talking through the risks and putting them into perspective, is a more adaptable way of approaching a difficult topic with a new patient.

Since the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Hanna 2002) confirmed that there are about 1000 deaths a year in the UK as a result of epilepsy, of which about 500 will be classified as SUDEP, it is no longer possible for the epilepsy community to ignore the issue. New national guidelines on epilepsy in England and Wales 2004 now include SUDEP as essential information.

Much information about SUDEP is now readily available from the medical profession and voluntary bodies through books, leaflets and, most of all, the internet. Links to the literature discussed in this article are found at:www.sudep.org/publications1a.asp

Epilepsy Bereaved, the leading charity formed in 1995 to support and inform families bereaved through epilepsy, now hears from families all over the world within weeks of a death. Many of us who have lost family members through SUDEP have achieved one of our main ambitions; to ensure that, when a death occurs to others, they have been forewarned, understand that it has happened before, and know where to turn for support and information.

Written by: Jennifer Preston
Epilepsy Bereaved , UK

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.