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of everyone affected by epilepsy

Chief Medical Officer calls for "breakthrough" in approach to epilepsy

10 Dec 2001

In his Annual Report on the state of public health in the UK, the Chief Medical Officer, Professor Liam Donaldson, has made a number of recommendations concerning the treatment and care of people with epilepsy.

These include:

  • A "genuine commitment" to put right serious and long-standing weaknesses in the standard of care for people with epilepsy
  • The new Modernisation Agency should be asked to provide advice on the redesign of the pattern of care for people with epilepsy to ensure that they are diagnosed and referred quickly, receive an accurate diagnosis, have their needs addressed and obtain effective treatment and enjoy good continuity of care and support in the management of what may be a life-long illness.
  • Much greater public and professional awareness is needed about epilepsy
  • Local maternity services should examine the quality of care they offer to pregnant women with epilepsy to ensure a service, which is in line with evidence-based best practice.
  • Royal Colleges and other professional bodies should ensure that sufficient expertise in epilepsy is contained in general and specialist training programmes.
  • Within three months of completion of the National Sentinel Audit of Sudden Death in Epilepsy an action plan should be in place to cut the level of preventable deaths from this cause.

Professor Donaldson said:

"The section of the Report on epilepsy shows how a disease has remained in the shadows for decades. Five earlier reports have remained largely unimplemented, negative attitudes to epilepsy still persist in our society, and the disease remains an unglamorous area of clinical practice. It is time for a real breakthrough in our approach to epilepsy, one that is modern, enlightened, transforming the lives of the 380,000 or so people in England who have epilepsy."

For the epilepsy charity British Epilepsy Association (BEA), Chief Executive, Philip Lee, said:

“The report outlines the real situation regarding epilepsy health provision in the UK today, that there simply isn’t the specialist knowledge or sufficient resources to deal with the needs people with epilepsy have. Currently there are only 327 Neurologists in the UK, only half with a specialism in epilepsy. This woefully inadequate level of care must be addressed.”

He added: 

“BEA welcomes the recommendations from the report, it is essential that there is accurate diagnosis and correct treatment for people with the condition. BEA hope that this report will be acted upon by decision makers, unlike the previous five reports into epilepsy provision. We agree strongly that a national plan should be put in place to reduce the number of Sudden Unexpected Deaths in Epilepsy. There should also be better advice for women with epilepsy planning to have children and the best medical treatment to help them through their pregnancy.”