Epilepsy Scotland is committed to raising awareness of SUDEP with the public, politicians, policy makers and the media. We have secured a high profile as the lead non-government organisation in both the Scottish Parliament’s Cross-Party Group (CPG) on Epilepsy and in the development of Managed Clinical Networks (MCNs) on epilepsy.

The National Sentinel Clinical Audit of Epilepsy-Related Death (Hanna 2002) and the findings from the Findlay Fatal Accident Inquiry (Taylor 2002) were made widely available throughout the NHS in Scotland by the Deputy Chief Medical Officer. The number of epilepsy-related deaths recorded annually in Scotland increased after the 2002 audit.

As a result of the inquiry findings, Epilepsy Scotland continues to be involved in training on epilepsy for GPs and nurses. To ensure that this agenda has political support, Jane Hanna, Director of Epilepsy Bereaved and Patricia Findlay, who lost two relatives through SUDEP, gave a presentation to the CPG on epilepsy about the audit. Following on further from this, in August 2002, Members of the Scottish Parliament from the CPG on Epilepsy were invited to write to their own Health Boards to ask how the findings of this audit would be implemented. We also urged the Health Minister to keep this on his agenda. Epilepsy Scotland continues to have an active working relationship with the Health Minister’s office.

In terms of input into ongoing practice development there are four MCNs for epilepsy across Scotland. Epilepsy Scotland ensures that information about SUDEP is included as part of their agenda in order to improve clinical practice in the management of epilepsy.

We participated in a debate at the 2004 International League Against Epilepsy Congress about ‘when is it best to discuss SUDEP with people who have epilepsy?’ Clinicians from across the UK decided this should happen during a subsequent appointment, in partnership with an epilepsy specialist nurse. However, patient information routinely given at first consultation generally includes information about SUDEP. Understandably, this is not an easy topic for people with epilepsy or their families and needs sensitive handling.

National guidance (SIGN 70 2003) advises that information on SUDEP is part of the essential package of information recommended for people with epilepsy. SIGN 70 stresses that clinicians ensure people understand the information given to them and that it is reinforced over time.

SUDEP is specifically mentioned in Epilepsy Scotland’s information literature and this is available on our website, as is Sheriff Taylor’s ruling on the fatal accident inquiry. SUDEP was included in the ‘Epilepsy–A Case Of Neglect’ briefing we gave to the Health and Community Care Committee regarding our petition for uniform care and services across Scotland. It was also included in our ‘Epilepsy–What’s Your Attitude’ briefing for Scottish Parliament Members.

In summary, SUDEP has been given an increasing amount of attention in Scotland over the past three or four years, doctors and patients have become more aware of the issue and discussion now takes place more routinely. Epilepsy Scotland continues to raise this significant issue with senior health professionals and politicians.

Susan Douglas Scott
CEO, Epilepsy Scotland

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