Campaign news and reports
Government reverses decision to remove DLA and PIP
We are pleased to announce the Government has reversed a decision that would have seen the Disability Living Allowance (DLA) and Personal Independence Payment (PIP) removed from disabled people living in residential care homes and colleges.
This follows the intervention of a variety of individuals and organisations, including Young Epilepsy's President, Sir Gerald Acher. Sir Gerald used his knowledge of students at St Piers School and College to argue against the proposal.
The Government announcement follows the publication of Lord Low's review into personal mobility in state-funded care. The Low Review included a consultation process to which Young Epilepsy contributed. Lord Low found that:
- DLA mobility is vital in order for people in residential care to maintain independence, and a lifeline to the community.
- There is no evidence of duplication of funding in relation to mobility needs being met by local authorities and those being met by DLA mobility.
- There is very clarity around the responsibilities of local authorities in terms of funding an individual's personal mobility needs.
The Minister for Disabled People, Maria Miller, is quoted as saying:
The reasoning behind the original decision was to ensure there were no overlaps in funding leading to double payments. We have spent the last few months gathering information and evidence and visiting disabled people in care homes to find out directly from them how their mobility needs are actually met in practice. ... after listening to the strong concerns of disabled people and their organisations, I have taken action and decided not to remove the payment.
Campaigning success on childhood epilepsy and the NHS
For some time now Young Epilepsy’s Champions Campaign has been working with partner organisations to press the government to place a much higher priority on improving health services for children and young people with epilepsy.
The evidence for change is clear and in all our meetings with Ministers, departmental advisors and MPs, as well as in our response to consultations, we have pressed the case for greater priority to be given to childhood epilepsy services in the emerging new NHS framework.
We were therefore pleased to see the Department of Health’s newly published initial ‘Outcomes Framework’ because childhood epilepsy is mentioned in three separate ways and for the first time as an NHS indicator:
- It confirms that a NICE Quality Standard for epilepsy in children is under development
- It confirms that childhood epilepsy is one of the conditions which will be covered by the
mortality from causes considered amenable to healthcare
indicator - It announces the introduction of a formal outcome indicator for
unplanned hospitalisation for asthma, epilepsy and diabetes in under 19s
More information on our Campaign success and the National Health Service.
Champions pilot report
This important report sets out the work done with schools to develop a model of good practice that can be used in schools across the UK.
Read the full Champions Report of the pilot work undertaken with 21 schools.
Sign your school up to the champions campaign
If you would like to know more about Young Epilepsy's Champions Campaign, please contact Alison Cornell at This email address is being protected from spambots. You need JavaScript enabled to view it. , or call 01342 832243 ext 444.
Champions campaign - surgery summit
Young Epilepsy Chief Executive, David Ford and the Prince of Wales’s Chair in Childhood Epilepsy, Professor Helen Cross were delighted to host a Champions Campaign summit on epilepsy surgery.
The event, entitled - Epilepsy Surgery: better futures or false economies? took place at The Goodenough College, Bloomsbury, London on Wednesday 17 November 2010.
The summit was aimed at paediatric consultants, GPs and nurses with a specialist interest in epilepsy, service providers and those responsible for NHS budgets, policy and the commissioning of services. Currently surgery is conducted on only around one in four children who might benefit. In many cases children are not even being referred for assessment. Young Epilepsy produced a summit paper setting out the human and financial cost of this under-referral.
Early Day Motion 265
In the 2010-2012 session of Parliament, Surrey MP Sam Gyimah supported our Champions Campaign by tabling this EDM. With your help, we were successful in gaining 35 signatures. Read the EDM here.
An MP's view of Young Epilepsy
Following his recent visit to our Young Epilepsy campus Francis Maude MP for Horsham said, driving on to the YoungEpilepsy campus gave me a bit of a surprise - I simply hadn’t been expecting something on such a huge scale as the wonderful, spacious campus.
I visited the new Neville Centre, St. Piers School and the brilliant arts centre. That was another lesson in not making assumptions – stepping into a rather modest looking building was, in reality, stepping into Ancient Egypt. Staff had painstakingly created a totally interactive pyramid and underworld which was a delight to our group of adults – I can’t imagine the experiences it provides the pupils and students who live and study on campus.
It was this kind of passion and dedication shown by staff that summed up my visit. The entire campus is a caring and nurturing place with a very special atmosphere. I’m delighted that young people from my constituency and, indeed, the whole country benefit from the services and care that are provided here.
National Epilepsy Week
As part of National Epilepsy Week 2011, the Joint Epilepsy Council worked with MediaPlanet to create a supplement in the Guardian newspaper which was published in May and includes lots of useful information about epilepsy.
Health summit and report
On 25 March we held a seminar at Young Epilepsy aimed at improving paediatric epilepsy services in the South East of England.
The full Summit Report and Action Plan is now available.
Follow the links below to see the relevant presentations from the day:
- Presentation by Dr Dougal Hargreaves, Department of Health on 25 March 2010 at Young Epilepsy
- Presentation by Prof Helen Cross, The Prince of Wales's Chair of Childhood Epilepsy on 25 March 2010 at Young Epilepsy
For more information on the outcomes of the event please contact This email address is being protected from spambots. You need JavaScript enabled to view it.
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