In his 2001 report, the Chief Medical Officer of England recommended that an action plan be developed by the Government to improve epilepsy services and address the findings of the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Hanna 2002). In 2003 the Government published the first action plan on epilepsy and this included the proposed publication of a clinical guideline for the diagnosis, management and treatment of epilepsy.

In England and Wales the body responsible for the development of evidence-based clinical guidelines is the National Institute for Health and Clinical Excellence (NICE). The guidelines were to address how care should be improved for children and adults with epilepsy, including areas in primary and secondary care where improvements in epilepsy services could reduce the risks of seizure-related deaths.

A development group was convened consisting of experts nominated by a wide range of organisations. The group included nine medical experts nominated by the Association of British Neurologists, Society of British Neurological Surgeons, Royal College of Physicians, Royal College of General Practitioners, Royal College of Paediatrics and Child Health, Royal College of Nursing, Neonatal and Paediatric and Child Health, and four patient representatives nominated by the Joint Epilepsy Council, Epilepsy Action, National Society for Epilepsy, and Epilepsy Bereaved. The group identified key clinical questions and reviewed the evidence identified by a methodology team based at the Clinical Governance Research and Development Unit at the Department of Health Sciences, University of Leicester. This review led to recommendations for clinical practice. Other experts were involved as co-opted members and there was widespread consultation with all stakeholders at each draft of the guidelines.

The clinical guidelines offer recommendations on diagnosis, classification, investigations, treatment, information, and support. Key priorities include timely assessment by a specialist within two weeks of a suspected first seizure, a consulting style that enables a partnership between patients and clinicians about management decisions, the need for a comprehensive care plan, individualised medication, and a regular structured review. All of these recommendations reflect the findings of the audit. The importance of the need for information to reduce the risk of SUDEP is a core theme. An example of the importance of information provision about SUDEP is found in the women and pregnancy section where the guideline recommends that women considering stopping their medication should be specifically warned about SUDEP.

The guidelines also emphasise why preventing seizures is important to reduce the risk of epilepsy-related death. The ‘Epilepsy – Be Aware’ card has recently been published by the government. This card has essential information on epilepsy, helpline details, and a leaflet setting out the importance of annual review. Both the card and the leaflet include information about SUDEP. Research showed that this was valued by patients.

Tailored information on the individual’s risk of SUDEP should be part of the counselling checklist for people with epilepsy and their families and/or carers taking account of the small but definite risk of SUDEP. The guidelines recognise that there may be factors that increase the risk of SUDEP. These include poor seizure control, having convulsive or nocturnal seizures, having a learning disability, being a young adult male, not taking treatment as prescribed or having abrupt or frequent changes to medication.

The guidelines also recognise particular issues relating to young people and the learning disabled. Both groups are at increased risk of SUDEP. Lifestyle issues and the importance of taking medication are particularly important issues to discuss with young people. Health professionals should be aware of the higher risks of mortality for people with learning disabilities and epilepsy and discuss these with individuals, their families and/or carers. SUDEP is also an essential part of a risk assessment of people with learning disability.

The time at which information about SUDEP should be given is after confirmation of the diagnosis, and tailored to the individual. The discussion is best made during a consultation where there is a partnership between clinician and patient. It is important that essential information on how to recognise a seizure, first aid measures, and the importance of reporting further attacks, should be given after the first suspected seizure.

A series of guidelines recommending advising health professionals to contact families and/or carers to offer their condolences, invite them to discuss the death, and offer referral to bereavement counseling and a SUDEP support group after a bereavement, was the result of research carried out with bereaved families.

For further information there are quick reference guides for health care professionals:

Diagnosis and Management of the Epilepsies in Children:

Diagnosis and Management of the Epilepsies in Adults:

Written By: Henry Smithson, GP North Yorkshire
UK Chair Epilepsy Guidelines Development Group

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