Public affairs

This page is primarily for politicians, researchers and journalists. It is designed to signpost you to key epilepsy information.

Below is a list of resources, publications and contacts that may help inform your work on epilepsy.

If you cannot find what you are looking for, or have a more detailed question regarding epilepsy facts and stats, please contact Stacey Rennard (PR and Campaigns Manager).
Email: srennard@epilepsy.org.uk
Telephone: 0113 210 8800 (UK) or +44 (0)113 210 8800 (international)

• Press and media
• Publications
• Consultations
• Groups in Parliament
• Parliamentary debates
• Joint Epilepsy Council of the UK and Ireland
• Neurological Alliance

Press and media

For media enquiries, and to contact the Epilepsy Action press office, please:

• Visit the press section of the website 
• Phone: 0113 210 8870 (UK) or +44 (0)113 210 8870 (international)
• Email: press@epilepsy.org.uk

Publications

Recent and relevant publications:

• Our most recent MP briefing
• JEC briefing card
• Epilepsy prevalence, incidence and other statistics, Joint Epilepsy Council of the UK and Ireland (2011). 
• England, Wales and Northern Ireland The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care, NICE (2012). 
• Scotland SIGN Guideline: Diagnosis and management of epilepsy in adults (2005).
• Scotland SIGN Guideline: Diagnosis and management of epilepsies in children and young people (2005).
• Wales Service Development Directive: Epilepsy, Welsh Assembly Government (2009).
• Epilepsy in the WHO European Region, World Health Organisation Global Campaign Against Epilepsy (2010).
• Services for people with neurological conditions, National Audit Office. (2011).
• Committee of Public Accounts: Services for people with neurological conditions (2012).
• Government response to 72nd Report of the Committee of Public Accounts: Services for people with neurological conditions.
• Intelligent Outcomes: Applying the health and social care reforms to improve outcomes for people with neurological conditions (2012). 
• Local adult neurology services for the next decade, Royal College of Physicians and Association of British Neurologists (2011). 

Past publications:

• Best Care: the value of epilepsy specialist nurse, Epilepsy Action (2010). 
• Epilepsy in England: time for change, Epilepsy Action (2009). 
• All Party Parliamentary Group on Epilepsy: Wasted Money, Wasted Lives (2007). 
• The National Service Framework for Long Term Neurological Conditions, Department of Health (2005). 
• National Sentinel Clinical Audit of Epilepsy-Related Death, Epilepsy Bereaved (2002). 

Consultations

Epilepsy Action responds to relevant public consultations on behalf of our members and other people with epilepsy. To view our submissions, please visit our consultations webpage. 

Groups in Parliament

• All-Party Parliamentary Group on Epilepsy (Westminster)
  The secretariat for the All-Party Parliamentary Group on Epilepsy at the UK Parliament is provided by Sharon Wood, Chief Executive of the Joint Epilepsy Council (JEC). To find out more about the work of the APG, including future meeting dates, please contact Sharon by emailing sharon.jec@btconnect.com or calling 01943 871 852 (UK) or +44 (0)1943 871 852 (international).
• Cross-Party Group for Epilepsy (Holyrood)
  The secretariat for the Cross-Party Group for Epilepsy at the Scottish Parliament is provided by Allana Parker, Communications Manager at Epilepsy Scotland. To find out more about the work of the Cross-Party Group, including future meeting dates, please contact Allana by emailing aparker@epilepsyscotland.org.uk or calling 0141 427 4911 (UK) or +44 (0)141 427 4911 (international).
• All-Party Group on Epilepsy (Stormont)
  The secretariat for the All-Party Group on Epilepsy in Northern Ireland is provided by Morina Clarke, National Manager for Northern Ireland at Epilepsy Action Northern Ireland. To find out more about the work of the APG, including future meeting dates, please contact Morina by emailing mclarke@epilepsy.org.uk

Parliamentary activity

Below are links to webpages detailing the most recent debates and other activity in the UK parliaments on epilepsy.

• November 2012: Debate on neurological and epilepsy services in the UK’s House of Lords
• October 2011: Prime Minister meets with epilepsy delegation
• November 2010 – April 2012: Epilepsy and Related Conditions Bill. (Ten Minute Rule Bill 112)
• MPs to debate epilepsy related death, November 2011. 

• Debate on epilepsy in the House of Lords, December 2010.
• UK MPs debate epilepsy services in the National Health Service, October 2010.

Joint Epilepsy Council of the UK and Ireland

Epilepsy Action carries out much of its political work under its membership of the Joint Epilepsy Council of the UK and Ireland (JEC). This is an umbrella group of charities and organisations working around the UK on behalf of people with epilepsy.

The Neurological Alliance

Epilepsy Action is a member of the Neurological Alliance, a coalition of more than 70 national and regional brain and spine organisations working in England.