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of everyone affected by epilepsy

National survey reveals the NHS is failing people with epilepsy

12 June, 2000

British Epilepsy Association (BEA) is calling for huge improvements to the health care service currently available to the estimated half a million people in the UK living with epilepsy.

BEA will be launching its Agenda for Action at a reception at the House of Lords on Wednesday 14 June, hosted by the charity’s President Baroness Gould of Potternewton. The reception will mark BEA’s fiftieth Anniversary.

BEA has discovered gross inequalities in the services provided by the UK’s different NHS Trusts to people living with epilepsy. The Association’s Agenda for Action calls for improvements in the following areas:

  • more specialists in epilepsy, both nurses and doctors
  • improved education about epilepsy for all health service staff
  • regional epilepsy groups set up to manage an integrated epilepsy service, which must include prompt and correct diagnosis.

One thousand BEA members responded to a questionnaire about living with epilepsy. Analysing the results, leading Consulting Psychologist Professor John Collings discovered that:

  • 72.3 per cent of respondents had problems with overall epilepsy management
  • 83.8 per cent had problems with anti-epileptic medication side effects
  • 57.5 per cent had problems with the help and/or advice they received from their neurologist and/or specialist
  • 51.6 per cent had problems with the help and advice they received from their GP.

The findings confirm the results of another recent report. The government commissioned Clinical Services Advisory Group (CSAG) found that most people living with epilepsy never see a specialist with a knowledge of the condition. The CSAG report made a number of recommendations to the Department of Health, but official response to the report so far hasn’t called for action, despite the report’s finding that many GPs and neurologists support the development of more specialised local services.

Philip Lee, Chief Executive of BEA, said:

“Based on the results of our survey it’s very clear that the NHS is failing large numbers of people with epilepsy. Frankly, this is not good enough, which is why BEA has launched its Agenda for Action.

"All people in the UK living with epilepsy should have equality of access to the best treatment and care for the condition, regardless of where they live.”

Download a copy of the Agenda for Action