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PRESS RELEASE: Minister acknowledges epilepsy health service failings
12 October 2010
Parliamentary Undersecretary of State for Care, Paul Burstow MP, has today acknowledged the “many failings of the current arrangements we have for the design and delivery of epilepsy services”. His comments formed part of a debate on epilepsy and the NHS at Westminster Hall this morning.
Responding to an impassioned speech by Paul Maynard MP, the first MP to publicly announce he has epilepsy, the Minister commended “the remarkable way he outlined a very compelling case, a very personal case, and posed some very important challenges this government needs to make sure it addresses”. He recognised that the words in guidance such as the NICE guidelines and the National Service Framework for Long-term (Neurological) Conditions had not translated into action, and admitted there was “a failing, not of intent, which we share, but implementation”.
Paul Maynard, MP for Blackpool North and Cleveleys, illustrated the enormous variation in services around the country, speaking from experience about the how the quality of his care declined when he simply changed GP from one who understood epilepsy to another who didn’t. He went on to call for a National Clinical Director for Epilepsy who would help to ensure that minimum standards of care were met for the 400,000 people living with epilepsy in England.
Laura Sandys MP, who has also declared she has epilepsy, spoke of the stigma that surrounds epilepsy and said that society created unnecessary barriers, referencing the restriction on people with epilepsy climbing Big Ben as an example. She also spoke of the great improvements that have been made in her own constituency of Thanet South and the surrounding area, following an initiative to train GP to run epilepsy clinics and provide ongoing care to people closer to their homes.
Shadow Health Minister, Liz Kendall MP, was one of many other MPs who contributed to the debate. She talked at length about the problem of misdiagnosis, which costs the country £134 million every year. She specifically asked the minister what plans he had to increase the numbers of epilepsy specialist nurse, how he would ensure that GPs were equipped with the skills and knowledge needed to commission an epilepsy service, and urged him to seek a Care Quality Commission review of epilepsy service.
Graham Faulkner, Vice Chair of the Joint Epilepsy Council of the UK and Ireland and Chief Executive of the National Society for Epilepsy, said, “We are delighted that such an important debate has taken place at such a crucial time of reform in the NHS. We were pleased to see so many MPs come and support Paul Maynard MP and were encouraged by what the Minister had to say. We look forward to the Minister making good on his promise to meet with Paul, the All-Party Parliamentary Group on Epilepsy and voluntary groups such as the Joint Epilepsy Council to begin to drive real change in health services for epilepsy.”
Replying to the speeches the Minister promised to consider a National Clinical Director and to look into the contribution the Care Quality Commission could make to improving epilepsy services.
Prior to the debate, MPs and representatives from the Joint Epilepsy Council of the UK and Ireland, as well as young people from the National Centre for Young People with Epilepsy called for ‘A fair deal for epilepsy’ and posed for photographs outside the House of Commons.
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Notes to editors
1. The Joint Epilepsy Council of the UK and Ireland (JEC) is an umbrella organisation which exists to represent the united voice of the voluntary sector. It presents evidence based views on the need to improve services for people with epilepsy, their families, and carers in the UK and Ireland. See www.jointepilepsycouncil.org.uk
2. For further information, please contact Aimee Gee, PR and campaigns manager at Epilepsy Action, on 07745 095 838 or email press@epilepsy.org.uk .
PRESS RELEASE: Call to politicians for better epilepsy services
22 May 2009
The People from across the UK met with politicians this week to demand better epilepsy healthcare, as part of National Epilepsy Week. Lobbies were coordinated by the Joint Epilepsy Council of the UK and Ireland (JEC) - an umbrella organisation of 26 charities, working together to improve the standard and accessibility of health and support services for people with epilepsy.
Events took place at Westminster, Stormont, the Scottish Parliament and the National Assembly for Wales to highlight the problems with epilepsy services across the UK. Over 90 politicians from across the UK attended, with many meeting their constituents to hear about their experiences of current epilepsy services.
Epilepsy services can vary greatly across the country. In Scotland, Northern Ireland and Wales people living in bigger areas and cities currently receive a better service than others. Those in more rural areas tend to experience difficulties in accessing services, due to distances from major hospitals and specialist epilepsy clinics.
Every year in England, 990 people die of epilepsy-related causes. A 2005 report by the All Party Parliamentary Group on Epilepsy, Wasted Money, Wasted Lives, revealed that 400 of these deaths are avoidable. The report also found that 69,000 people live with unnecessary seizures and £189 million is needlessly spent each year.
A recent report by Epilepsy Action, Epilepsy in England: Time for change, also revealed a catalogue of failings in epilepsy care and services across the country. So far, more than 180 MPs have signed an Early Day Motion (EDM) tabled in support of Time for change.
The lobby followed a meeting with Health Minister Ann Keen MP, in which she responded to both reports and outlined her plans for improving epilepsy services. In particular she promised to write to all Strategic Health Authorities, highlighting the reports and urging them to review their epilepsy services. She also promised to set up a meeting between the JEC and Director of Commissioning Mark Britnell, to discuss how World Class epilepsy services should be designed and commissioned.
Karen Deacon, chair of the JEC, said: "We are delighted that so many politicians attended the parliament and assembly events and met with their constituents. The meetings have given people affected by epilepsy a fantastic opportunity to highlight the need for improved services. We hope that politicians will put pressure on government and local health services to prioritise epilepsy and provide the standard of services that people with epilepsy so desperately need."
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Notes to editor:
1. For more information about the JEC and National Epilepsy Week please visit www.jointepilepsycouncil.org.uk
2. For more information about Wasted Money, Wasted Lives, visit www.jointepilepsycouncil.org.uk/Wasted-Money-Wasted-Lives.html
3. For more information about the Time for Change report visit www.epilepsy.org.uk/timeforchange
For further information about anything in this release please contact Aimee Bowen at Epilepsy Action on 0113 210 8866, or email press@epilepsy.org.uk, or Amanda Cleaver at the National Society for Epilepsy on 01494 601404 or email amanda.cleaver@epilepsysociety.org.uk
For enquiries made outside normal office working hours, please call 07745 095 838.