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.
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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.
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For families affected by SUDEP
When SUDEP has happened the family should be offered referral to bereavement counselling and a SUDEP support group.
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Best practice guidance in England & Wales
A brief guide about how the NICE guidelines affect you
A 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 full guidelines, view the NICE website www.nice.org.uk.
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Best practice guidance in Scotland
The SIGN guideline is available from www.SIGN.ac.uk.
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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.
