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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JEC Campaigns

The relationship between government ministers, individual member organisations and the JEC.

Background:

Central to the JEC’s strategic direction is the need to present a consistent set of messages to Government. The JEC is also deeply conscious and aware of the right of member organisations to raise issues specific to them with ministers, but feels that a greater level of co-ordination is important.

Proposal:

One of the JEC’s key strategic objectives is to increase epilepsy awareness amongst politicians, civil servants, service providers and the general public. It also aims to grow the list of supportive politicians in each country in which it operates.

JEC’s aim is to present co-ordinated messages to government ministers. Individual JEC members will from time to time wish to make their own representations to specific parliamentarians. JEC has no mandate or desire to interfere with this process.

JEC hopes that all its members can see the benefit of presenting consistent JEC messages to underpin the specific messages individual member organisations may wish to deliver. Again there is no suggestion of JEC wishing to vet individual member organisations and their activities in any way. JEC is not a police force.

In light of this JEC proposes that each member organisation endeavours to let the JEC General Secretary know in advance of meetings with a Government Minister. This will help the JEC to co-ordinate activities and ensure that Government Ministers are presented with consistent messages in support of specific issues. JEC would also like to encourage individual members to provide the JEC General Secretary with a brief summary of any meeting held, although JEC fully acknowledges and respects that individual members may wish to keep elements of their discussions confidential.


David Josephs
Chair, JEC
November 2004

 

 

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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