SUDEP - National Guidance on SUDEP

National guidance on the management and diagnosis of the epilepsies including reducing risk of SUDEP is available from the National Institute for Clinical Excellence (NICE) in England and Wales and from Scottish Intercollegiate Guidelines Network (SIGN) in Scotland. A leaflet containing a summary of the NICE epilepsy guideline can be downloaded here. It contains a brief summary for people with epilepsy and their families, and includes specific guidance on SUDEP in the NICE guideline; the guidance took account of the findings of the National Audit of Epilepsy Deaths 2002 and research on SUDEP. SUDEP support and information on bereavement counselling is available from Epilepsy Bereaved.

For people with epilepsy

Although SUDEP is rare for many types of epilepsy, risks need to be assessed individually. The NICE guideline recommends that individuals with epilepsy and their families or carers should be given information about SUDEP and ways to reduce the risk at diagnosis. SUDEP is less likely to happen if seizures are being controlled effectively and you and your family or carers are alert to the risks of potential night-time seizures.

There may be factors that increase the risk of SUDEP, such as poor control of seizures, having convulsive seizures, having seizures during sleep, having a learning disability, being a young adult male, not taking medication as prescribed or having abrupt or frequent changes to medication.

For families affected by SUDEP

When SUDEP has happened the family should be offered referral to bereavement counselling and a SUDEP support group.

Best practice guidance in England & Wales

Two quick reference guides for health care professionals

In addition, there is a version which has been prepared for individuals with epilepsy, their families, carers and members of the public. It describes the guidance that NICE has issued to the NHS on the epilepsies in adults and children:

For the full guideline, view the NICE website www.nice.org.uk.

Epilepsy Action and Epilepsy Bereaved Consensus Statement - 3 December 2004

In October 2004 Epilepsy Action and Epilepsy Bereaved worked in partnership to review progress on national initiatives since the publication of the National Audit on Epilepsy Deaths. Experts were convened to review evidence available and a consensus was reached and was the basis of a media campaign in the Autumn of 2004.

Best practice guidance in Scotland

The SIGN guideline is available from www.SIGN.ac.uk.

National Service Frame (NSF) work for long-term medical conditions

The NSF is a Government National Plan and aims to raise standards of treatment, care and support across health and social care services. Further information can be found on their website www.dh.gov.uk/longtermnsf.