Joint Epilepsy Council - Department of Health Action Plan

The Joint Epilepsy Council of the U.K. and Ireland
Registered Charity No. 1104313
PO Box 186, Leeds LS20 8WY
E: sharon.jec@btconnect.com
Contact: Sharon Wood
General Secretary
Tel:01943 871852

Working to meet the needs of people with epilepsy and their families

Joint Epilepsy Council

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Department of Health Action Plan

In February 2004, the Department of Health published its Health Action Plan - 'Improving Services for People With Epilepsy'. The Action Plan was drawn up in response to the National Clinical Audit of Epilepsy Related Death (NCAERD) that was published in May 2002 (see issue 21 of Focus for details) and as a result of recommendations in the Chief Medical Officer's 2001 Annual Report that epilepsy services should be improved.

The Action Plan covers three areas targeted for improvement:

	Care, management and treatment of epilepsy

	Information provision

	Pathology and post mortem investigations

and within these areas are specific objectives.

Care, management and treatment of epilepsy

NCAERD found that 54% of adults had inadequate care and 77% of children had inadequate care. The Action Plan states the Department of Health will make improvements in the following ways:

	By engaging with NHS and Primary Care Trusts and Strategic Health Authorities to suggest they review local epilepsy services and address shortfalls.

	£1.2million will be invested in a two year project to improve quality and access in neurology services.

	By liaising with the Royal College of GPs to develop more GPs with a special interest in neurology.

	The National Service Frameworks for Children and Long Term Conditions will both focus in part on epilepsy.

	The National Institute for Clinical Excellence has been commissioned to look at anti-epileptic drugs for children and adults.

Information provision

NCAERD found deficiencies in communication between healthcare professionals and patients. To address this the Department of Health has funded the National Society for Epilepsy to expand its Epilepsy Information Network. NHS Direct Online will also be updating its epilepsy information.

Pathology and post mortem investigations

NCAERD found that only 10% of families were contacted by a specialist following an epilepsy related death and that there were no specific guidelines for the investigation of epilepsy specific death. The Department of Health is aiming to improve post mortem practice and to improve support for families at the time of bereavement.

Whilst it is gratifying that epilepsy has finally been included on the Department of Health's agenda, the Action Plan is primarily based on existing initiatives to improve the NHS - many of which deal with neurology generally rather than epilepsy specifically. What is particularly disappointing is that the Action Plan promises to engage with local health organisations to improve epilepsy services, but there is apparently no power or will to force improvements through. Without making significant investment available it is difficult to see how any such improvements will be made. The situation may change in the future with the implementation of the various National Service Frameworks, but sadly epilepsy remains a severely underfunded condition.

CLICK HERE for the Department of Health Site

Special Notices

JEC News
April 10 edition now available online - click here

JEC Launches Epilepsy Call For Action Leaflet
The JEC has launched its call for action leaflet for epilepsy in time for the forthcoming parliamentary elections. We believe better management of care and resources is needed to improve the diagnosis and treatment of epilepsy. This could prevent 400 deaths per year, bring thousands more people into employment and boost the education of young people with the condition. It could also save Government over £22million per year! To find out more click here.

National Epilepsy Week (NEW) 2010
Due to the timing of the General Election at Westminster, National Epilepsy Week 2010 in England, Scotland, Wales and Northern Ireland will take place week commencing Sunday 13th June. The topic is Epilepsy and the Under-25s.

Member organisation Brainwave, in Ireland, will be retaining the usual May dates for NEW 2010 and activities being organised by them in May, and other events being staged in June can be found by clicking here.

"Taking the Tablets" collaboration
JEC members Epilepsy Bereaved, the National Society for Epilepsy, Epilepsy Scotland, Epilepsy Action and the National Centre for Young People with Epilepsy have joined forces under the JEC umbrella to develop an information DVD on the importance of taking anti-epileptic medication.

The ‘Taking the Tablets’ DVD and accompanying booklet offers a programme for people with epilepsy about anti-epileptic drug treatment with views and experiences of people with the condition and two medical professionals.

Speaking on the DVD, Dr Henry Smithson Senior Lecturer in General Practice, Sheffield; “The majority of people who have epileptic seizures are given anti-epileptic drugs to try and reduce or even stop the seizures…Between 60 and 70% of people’s seizures can be stopped by anti-epileptic drugs” Click here to watch the dvd

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