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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About Epilepsy

Epilepsy is a neurological condition which presents in as many as 50 different types. It is diagnosed when someone has recurrent seizures (also known to many people as fits, grand mal, petit mal, absences). It is caused by excess electrical activity in the brain.

Over 440,000 people have epilepsy in the UK. It is the most serious neurological condition is a major long-term disability with similar numbers of people affected as insulin dependent diabetes.

Many of the world’s leading epilepsy specialists work in the UK, but:

  • very few GPS understand epilepsy sufficiently.
  • there are too few consultant neurologists specialising in epilepsy in both adult and paediatric care.
  • for far too many people it takes far too long to have an EEG or MRI examination. EEG and MRI are scanning techniques used to diagnose and treat epilepsy accurately.
  • two out of five people experiencing seizures could be seizure fee, but are not.
  • 50% of children with epilepsy under perform at school.

The JEC believes a range of initiatives would bridge this gap. See our Epilepsy Manifesto – “Epilepsy – The case for …… Making the choice agenda relevant to people with epilepsy”.

 

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

ARTHOUSE Meath
ARTHOUSE Meath is a charitable enterprise that creates and exhibits artworks for sale in printmaking and painting which celebrate the skills and talents of adults who live with severe epilepsy and physical disabilities. ARTHOUSE Meath is part of the Meath Epilepsy Trust in Godalming, Surrey. Click Here for more.....

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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