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Epilepsy charities dismiss government’s action plan for epilepsy

19 February, 2003

Leading epilepsy charities in the UK have dismissed the long-awaited government Action Plan on epilepsy services in England, published by the Department of Health (DH) today, as "totally unacceptable and insufficient".

Amongst the measures introduced are:

  • spending £1.2 million over the next two years on a project with the NHS Modernisation Agency to improve access to neurology services;
  • supporting the National Society for Epilepsy with grant of £288,600 over the next 3 years to improve support and information for people with epilepsy and their families; this is in addition to an existing grant of £122,000 to support their "Living Well" project which provides local courses to promote self-help and self-management for people living with epilepsy;
  • working across government and by professional organisations to modernise pathology and post mortem services which will address any shortfalls in current practice, and help improve support and information for bereaved families of people with epilepsy;
  • medicines management programmes which are raising awareness among health professionals, improving partnership between patients and professionals in relation to medicine taking, and looking at the effective use of medicines;
  • helping to develop more general practitioners with a special interest in neurology; and
  • improving care and support for pregnant women with epilepsy.

The National Institute for Clinical Excellence (NICE) is expected, according to the DoH, to develop clinical guidelines for the diagnosis, management and treatment of epilepsy to help address widespread variations in clinical practice and to contribute to the improvement of services. NICE is also looking at the clinical and cost effectiveness of new anti-epileptic drugs in children and adults with an appraisal due in October 2003. Guidelines will be published in June 2004.

The DoH also expects the National Service Framework (NSF) for Long Term Conditions to develop guidelines for the standards of care for specific neurological conditions, including epilepsy. The NSF is planned for 2004, with a 10 year implementation plan started in 2005. The NSF will cover Long Term Medical Conditions, of which part will cover neurology, of which a part will be epilepsy.

However, leading epilepsy charities have condemned the Action Plan, saying that people with epilepsy will continue to die unnecessarily and that government's Action Plan fails to address this.

Philip Lee, Chief Executive of Epilepsy Action said:

"I don't see how any aspect of this plan will have a meaningful or immediate impact on reducing preventable epilepsy deaths or improving the quality of care. This is of no comfort to the 380,000 people with epilepsy in England or those families devastated by the loss of a loved one. How many more people in England need to die unnecessarily before serious action is taken?".

He added:

"The Action Plan is a list of initiatives that are part of the government's broad changes to the NHS and, as such, they are welcome. However, there is no urgency, next to nothing specific to epilepsy, no money, no targets, no will - and the result will be 'no change'. People with epilepsy will continue to face poor quality care and the potentially preventable deaths will continue. People with epilepsy and their families deserve better."

Jane Hanna, director of Epilepsy Bereaved, speaking for bereaved families, said:

"Although the Action Plan raises awareness of the serious failings in epilepsy services and highlights the number of potentially avoidable deaths, it fails to require local health organisations to take action and seems to rely entirely on a 'wing and a prayer' that local health authorities will deliver. We fail to see how this Action Plan can deliver any real change to help cut the unacceptable number of potentially avoidable epilepsy deaths."