NICE 2002/026
Issued: 20 May 2002

Press release

Joint action by NICE, Chief Medical Officer and patient groups to reduce avoidable epilepsy-related deaths

  • National audit of sudden unexpected death in epilepsy reveals 59% of child deaths and 39% of adult deaths were potentially avoidable
  • NICE clinical guideline on management of epilepsy in children and adults will incorporate lessons learnt from audit
  • Chief Medical Officer recommends action plan within 3 months

A UK-wide audit of sudden unexpected death in epilepsy has found that 59% of child deaths and 39% of adult deaths could be potentially or probably avoidable. The audit was set up to establish whether deficiencies in the standard of clinical care provided to people with epilepsy might have contributed to the premature deaths of people with epilepsy. The report's findings will inform action by the National Institute for Clinical Excellence (NICE) and England's Chief Medical Officer to reduce the number of avoidable epilepsy-related deaths.

The National Institute for Clinical Excellence will address issues raised by the audit when developing a clinical guideline on the management of epilepsy in children and adults (expected to be published June 2004). The audit findings will also be used to inform the Institute's appraisal of drugs used to manage epilepsy in children and adults (expected to be published September 2003).

People with epilepsy have a risk of premature death that is 2-3 times higher than in the general population. Sudden unexpected death in epilepsy is the principal cause of seizure-related death in people with chronic epilepsy, and has been estimated to account for about 500 deaths each year. Although it is not clear what causes these deaths, the most important risk factor is the occurrence of seizures - the more frequent the seizure, the higher the risk. However, most people with epilepsy (up to 70%) have the potential to be seizure free if their condition is appropriately managed.

Figures obtained through the audit were reviewed by an expert panel, which concluded that:

  • 59% (13/22) of deaths in children were potentially or probably avoidable.
  • Care provided was deficient in 77%(17/22) of children, due to:

- Inadequate drug management (45%);
- Inadequate access to specialist care, for example access to outpatients or being seen by a consultant (36%);
- Inadequate investigation, for example an EEG or brain scan (32%).

  • 39% (62/158) of deaths in adults were potentially or probably avoidable.
  • Care provided was deficient in 54% (85/158) of adults, due to:

    - Inadequate access to specialist care, for example access to outpatients or being seen by a consultant (35%);
    - Inadequate drug mangement (20%);
    - Lack of appropriate investigation, for example and EEG or brain scan (13%).

Participating organisations in the audit, which was led by Epilepsy Bereaved and funded by NICE (on behalf of the NHS in England and Wales) and by the Government agencies for Scotland and Northern Ireland, include the International League against Epilepsy (British Branch), the Royal College of GPs, the Royal College of Nursing, the Royal College of Paediatrics and Child Health, the Royal College of Pathologists and the Royal College of Psychiatrists.

The Chief Medical Officer for England has recommended that the Department of Health should publish an action plan to tackle areas of concern within three months of the audit's publication. In the meantime the report recommends that local NHS clinicians and organisations should establish or review policies and practice for the management of epilepsy and epilepsy-related deaths.

David Pink, Audit Programme Director at NICE, said at the launch of the report: “This is the beginning of a process to improve care for people with epilepsy. The findings of this audit enable the NHS to take practical steps to improve the care provided to people with epilepsy. NICE will use the findings of the audit to inform other areas of its work, including a clinical guideline on the management of epilepsy in children and adults, that will be distributed to the NHS in England and Wales. ”

Ends

Notes to editors:

  1. A copy of the summary report published by NICE, National Clinical Audit of epilepsy-related death, can be found on the NICE website at www.nice.org.uk. Full results and details of the methods used for the audit are presented in the full report which is available from the Epilepsy Bereaved website at www.sudep.org.
  2. The National Sentinel Clinical Audit of Epilepsy-related Death was set up to establish whether deficiencies in the standard of clinical management, or in the overall healthcare package, could have contributed to the deaths.
  3. The audit was developed using a structured approach involving multi-professional and lay groups, and reviewed two key areas: investigations into the deaths (pathology); and general practice (primary) and hospital-based (secondary) care.
  4. The audit team reviewed the official records of 2412 individuals who died from an epilepsy-related death in the UK between September 1999 and August 2000. Of the 2412 deaths with epilepsy mentioned on the death certificate, 1023 were subject to post-mortem and 1389 were not. For the audit of investigation of death, records were examined for 439 (43%) of the 1023 deaths for which there were post-mortem records and for 156 (11%) of the 1389 deaths for which there were no post-mortem records. For the audit of care before death, a total of 286 primary care case notes and 180 secondary care case notes were examined.
  5. The National Institute for Clinical Excellence (NICE or 'the Institute') is part of the NHS and its role is to provide authoritative and reliable guidance on healthcare for patients and their carers, healthcare professionals and the wider public in England and Wales. For more information about NICE, log on to www.nice.org.uk.
  6. Epilepsy Bereaved have set up a website, www.sudep.org, which includes the full report of the National Sentinel Clinical Audit of Epilepsy-related Death, and a patient information leaflet. Members of the public who have been bereaved by epilepsy-related death can contact the Epilepsy Bereaved helpline on 01235 772 852. People with epilepsy can contact the Epilepsy Action helpline for general advice on 0808 800 5050.