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of everyone affected by epilepsy

Epilepsy charity calls for change in attitudes

19 May 2003

The charity Epilepsy Action has called for a change in attitudes on the anniversary of a National Audit which found 400 people with the condition in the UK die unnecessarily every year.

The theme of this year's National Epilepsy Week (18-25 May) is 'Attitudes and Awareness' and Epilepsy Action believes that a change in attitudes towards epilepsy is essential before services can be improved.

Philip Lee, Chief Executive at Epilepsy Action said:

"People with epilepsy are facing an uphill struggle. There is still widespread ignorance about this condition. Our members often face negative, old-fashioned attitudes at work, at school, from the media and sometimes at home. This is compounded by a lack of specialist knowledge in the medical profession. Too many people are not receiving the basic health care they deserve."

May 2002 saw the publication of the National Sentinel Audit into Epilepsy Related Deaths. The Audit found that of the 1,000 people a year who die from epilepsy, 400 of these deaths were potentially avoidable due to serious deficiencies in health service provision for people with the condition. The Government's Action Plan for epilepsy (published in February this year) addressed some of the issues but fell short of setting targets for reducing the number of epilepsy related deaths; and it failed to commit any additional meaningful resources to address the problems.

The Government's Chief Medical Officer, Sir Liam Donaldson, has acknowledged the poor level of service people with epilepsy receive. In an open letter to NHS Trusts published earlier this month, he recommended a way forward after the Action Plan. He suggested NHS organisations and clinicians review their policies and practices at a local level in light of the National Audit findings, and address any shortfalls.

Epilepsy Action welcomes the CMO's initiative. Philip Lee continued:

"We're very pleased to see the recommendations made by Sir Liam Donaldson. Ensuring patients are aware of the risks of epilepsy is a key step to preventing epilepsy related deaths. Developing more epilepsy nurse specialists is one of our objectives through our Sapphire Nurse scheme, so we recognise the importance of their role but we'd also like to see specific targets for reducing the number of epilepsy-related deaths and a significant injection of funds to deliver improved services."