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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Additional Parliamentary Activity

Lobbying activities will take place in other Parliaments in the UK during National Epilepsy Week.

A further APPG meeting is planned to take place during NEW when Health Minister Ann Keen has promised to attend to feed back on the identification of levers and areas of action for the Department of Health, local health communities and the third sector to support the necessary improvements to epilepsy services outlined in the Wasted Money Wasted Lives report. This meeting will take place on Wednesday, 20th May at 4.00 pm in Committee Room 2 of the House of Lords.

There will be a JEC display stand in the Scottish Parliament on the 20th and 21st May with Epilepsy Scotland manning the stand on the 20th and a photo opportunity for MSPs on the 21st. Further details can be obtained from Allana Parker at Epilepsy Scotland (AParker@epilepsyscotland.org.uk).

At the National Assembly for Wales, the All Wales Epilepsy Forum is holding a JEC sponsored Epilepsy Awareness Event on the 20th May. Further details can be obtained from Lesley Morris, Epilepsy Wales (epilepsywales@aol.com).

In Northern Ireland, Epilepsy Action is staging an awareness event in the Long Gallery in Stormont from 12.00 pm to 3.00 pm on Monday, 18th May. Further details from Morina Clarke (mclarke@epilepsy.org.uk). 

Special Notices   

JEC News
October 09 edition now available online - click here

"Best Value, Better Care - Commissioning Epilepsy Services" Tues 23 Feb 2010 - Holiday Inn, London Kensington Forum
The JEC is jointly planning a one-day event for PCT and SHA Commissioners responsible for epilepsy services. High quality epilepsy services can change lives - find out how this can be achieved through effective, targeted commissioning at this one day event from the JEC, the Department of Health and UCB Pharma.
Full Programme
Register

UK Epilepsy Research Network (UKERN)
Over the past three years there have been discussions about the formation of a UK Epilepsy Research Network (UKERN). The network will be open to all epilepsy researchers with the purpose of raising the standard of epilepsy care, improving the co-ordination and quality of epilepsy research and to facilitate collaboration between epilepsy centres. Meetings have been held for professionals with an interest in epilepsy research around the UK, to decide upon a firm proposal for the structure and management of the UKERN. These were chaired by Professor Tony Marson from the University of Liverpool.

It has been decided that an integral part of the UKERN should be patient and public involvement (PPI) to enable people with epilepsy and their friends, family and carers to have a voice in the network and help determine the direction of epilepsy research in the UK.

As a starting point, UKERN would like to hear views on epilepsy research, the formation of the network and how people with epilepsy can be involved. Epilepsy Action is carrying out this work on behalf of UKERN. You can contribute by completing an online survey - click here. For a paper copy of the survey, contact Margaret Rawnsley at Epilepsy Action on 0113 210 8800.

JEC National Epilepsy Week 2010
National Epilepsy Week 2010 will take place between 13th and 19th June. The topic will be "Epilepsy and the Under-25s". Further details to follow.

Inverness SNP annual conference - October 2009

Aileen Campbell MSP & Public Health Minister Shona Robison

The JEC stand proved popular with delegates.  So much so that it attracted another Cross-Party Group supporter in Aileen Campbell MSP.  Public Health Minister Shona Robison also visited the display staffed by JEC members Epilepsy Connections, Epilepsy West Lothian, Epilepsy Scotland and Quarriers.

 

 


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