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of everyone affected by epilepsy

Epilepsy deaths "could have been avoided" - report

20 May 2002

A UK Government funded report into epilepsy deaths shows that 39 per cent of adult deaths and 59 per cent of deaths in children were potentially avoidable and that shortcomings in care may have been a contributing factor.

The report, launched at the start of National Epilepsy Week (19-25 May 2002) was managed and co-ordinated by the voluntary charity Epilepsy Bereaved with the participation of five medical royal colleges. It set out to establish whether there were inadequacies in the standard of clinical care that contributed to epilepsy deaths, whether some of these deaths were avoidable and whether the quality of the investigation of deaths, and contact with bereaved families, was adequate.

Professor David Fish, Consultant Neurologist at the National Hospital, London, one of the lead authors of the report, outlined the findings of the report. He states:

"The report found failures in the provision of care all through the system. This included problems of timely access to expert specialists and a lack of structured and effective review at primary and secondary care. It concluded that poor epilepsy management resulted in a substantial number of potentially avoidable deaths."

Jane Hanna, Director of Epilepsy Bereaved and the lay author and co-ordinator of the report on behalf of the Joint Epilepsy Council (JEC) said:

"This report is a call for action for the health service. Five prior Government reports identified inadequacies in epilepsy services, but they have all gathered dust on departmental shelves.

"The four UK Chief Medical Officers said 'we will demonstrate that by taking action now, lives may be saved.' We want to be sure that this commitment from above, will make real improvements at health care grassroots if we are going to offer hope to the bereaved families at the heart of this report."

The overall findings of the report showed matters of urgent concern including:

  • Inadequate care in overall epilepsy management (54 per cent adults and 77 per cent of children)
  • Inadequate drug management (20 per cent adults and 45 per cent children)
  • Lack of appropriate investigations (13 per cent adults and 32 per cent children)
  • Little documented evidence that the hazards of epilepsy (including risk of death) had been discussed with people with epilepsy who had died (31 per cent hazards and 1 per cent risk of seizures could be fatal)
  • Little documented evidence of GP (7 per cent) or specialist (10 per cent) contact with a bereaved family to discuss the death
  • Two thirds of pathologists were not aware of a system in place to inform relatives about post-mortem results

Epilepsy is the most common serious neurological condition affecting more than 450,000 people in the UK. Every year official figures report about 1,000 people die in the UK as a result of epilepsy. This is more than the combined figures for cot deaths and AIDS. Studies have estimated that 500 sudden and unexpected deaths (SUDEP) occur in otherwise healthy people and the greatest numbers are among young people.

The report indicates that epilepsy-related death, particularly SUDEP is still underestimated by health care professionals and this, to quote from the report: "may reflect the mistaken belief that epilepsy is a benign condition. The risk of death associated with epilepsy appeared rarely to have been discussed with patients or their families."

In order to reduce mortality, therefore, there is a need to strive towards optimum seizure control as up to 70 per cent of people with epilepsy have the potential to be seizure-free.

The report concluded that any future plans drawn up by the four Chief Medical Officers for England, Wales, Scotland and Northern Ireland would need to address:

  • Inadequate access to appropriate epilepsy care
  • Lack of education of health care professionals about the principles of epilepsy management and the risks of epilepsy-related deaths
  • Poor communications with patients and their families and other carers
  • Deficiencies in post-mortem investigations.

In a statement, the Chief Medical Officer for England has stated that he intends to produce an action plan within the next 3 months to reduce the level of preventable deaths from epilepsy, work on which has already begun.

Epilepsy Action's Chief Executive, Philip Lee, said:

"This report confirms our worst fears as it highlights the systemic failure in health care management of people with epilepsy. Guidelines and standards in existence are clearly not being met.

"Improvements to the standard of epilepsy care in the UK are essential not only to minimise epilepsy related deaths but to ensure the approx. 450,000 children and adults with epilepsy in the UK have a basic standard of appropriate care."

Epilepsy Action calls for a number of measures to prevent epilepsy deaths and improve care for those with epilepsy including:

  • Everyone experiencing their first seizure should have access to epilepsy specialists within 28 days
  • Access to MRI scans and other appropriate investigations should be available within 28 days
  • Regular reviews (at least once a year) of all patients and their medication (37 per cent on non seizure free adults in the report had not been seen for over a year)
  • Patients to be informed about the risk of SUDEP where appropriate

Epilepsy Action wants the government to ensure quality of investigation into epilepsy deaths and how they are recorded.