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

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Joint Epilepsy Council
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JEC Response to the Department of Health Action Plan

The Joint Epilepsy Council welcomes the attention that the Chief Medical Officer has brought, through the Government Action Plan on Epilepsy, to the serious deficiencies in service provision for people with epilepsy and the significant potential for saving of life in this area.

Whilst welcoming the increased profile that the Government has given to epilepsy through the Action Plan, the JEC calls on the Government to improve on the series of initiatives that are planned, to ensure that real action results in benefit for
people with epilepsy.

The voluntary sector calls on the government to strengthen the plan by making clear what funds will actually be available to local health organisations to develop epilepsy services and how the government intends to monitor or check whether
services have improved and whether lives have been saved.

The Joint Epilepsy Council views the Action Plan as insufficient to tackle the serious shortfalls identified in the National Sentinel Audit of Epilepsy Related Deaths (SUDEP) in May 2002. Whilst we welcome the fact that the Action
Plan brings epilepsy to the fore in a number of existing initiatives, the Action Plan is fundamentally flawed in that it does not contain:

 
any target for the reduction of epilepsy related deaths
 
any proposed means for monitoring the effectiveness of the plan
 
any significant injection of funds to deliver improved services.


It is reliant upon recommendations and requests to the Health Service, which, when faced with competing directives for action from the government in other areas of health provision, is unlikely to deliver any significant improvement in
care for people with epilepsy and, critically, unlikely to reduce the 400 annual preventable deaths from epilepsy.

We believe there should be a national target of a 40 per cent reduction in epilepsy related deaths within three years.

We are committed to working with the government and health service to deliver improvements in care and remain available to help develop these initiatives into effective plans.

In the attached document we have briefly analysed the various points within the governments action plan and have indicated our view on these and how they could be improved.

CLICK HERE to access the document.

 

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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