GROUNDBREAKING RESEARCH GIVES UK’S FORGOTTEN POLIO COMMUNITY NEW HOPE
01 July 2011 – The UK’s forgotten Polio community are being given new hope by a groundbreaking clinical research project.
Despite the perception that Polio is a disease which has been consigned to the UK’s history books, there are 120,000 people nationwide who are living with its legacy.
The research, funded by the British Polio Fellowship, is the first-ever study into the long-term effects of Polio and Post Polio Syndrome (PPS) and will provide the medical community with vital information on the true impact of the devastating neurological conditions. The research will also provide long-awaited management solutions, thereby dramatically improving the quality of life of the UK’s forgotten patients.
Interim results from the study, which have been revealed to mark the launch of British Polio Month (1st – 31st July), demonstrate the real impact of PPS, a condition which is largely unknown within the medical profession, despite as many people in the UK living with the late effects of Polio as who suffer from Parkinson’s disease.
Professor Carolyn Young, consultant neurologist at the Walton Centre for Neurology and Neurosurgery in Liverpool who is leading the study, comments: “This research project is essential if the NHS is to improve the lives of tens of thousands of patients. “Those with PPS are faced with a lack of knowledge and understanding of their condition from health professionals – the medical community has no real understanding of PPS, either of its true effects or how to effectively manage it.
“Our interim results provide strong evidence to show that quality of life for those living with PPS is significantly worse than for the wider population, and that the fatigue experienced is not only physical, but cognitive, delivering a double blow for those with the condition. “The study is now being extended to review quality of life and fatigue over time, rather than at a single point to enable us to work to create the first-ever PPS patient self-report measures for fatigue and quality of life, which will enable us to develop effective PPS management therapies.”
Pam Jones, chairman of the British Polio Fellowship, comments: “The tens of thousands who contracted Polio in the epidemics of the 1950s are still with us and are now facing years of crippling pain and fatigue without any medical support due to shockingly low awareness of PPS amongst health professionals. “British Polio Month is dedicated to raising awareness amongst health professionals and the wider public of the effects of Polio and PPS, to ensure that those living with these conditions are supported and successfully managed by an informed medical community.”
PPS is an incurable neurological condition which occurs in up to 80 per cent of people who have contracted Polio. After a long time without any significant change in their condition, people may develop new or increasing weakness, stamina problems, fatigue and pain.
The British Polio Fellowship is dedicated to helping, supporting and empowering those in the UK living with the effects of Polio and PPS. The British Polio Fellowship provides information, advocacy, welfare and support to enable people to live full independent and integrated lives.
If you would like further information about British Polio Month, the British Polio Fellowship or would like to make a donation, please visit www.britishpolio.org.uk
For further information, please contact:
BCS Public Relations
Tel: 0115 9486901
About British Polio Month
- The Walton Centre for Neurology and Neurosurgery in Liverpool is undertaking a study entitled ‘Developing and validating self-report measures for fatigue and needs-based quality of life in Post Polio Syndrome (PPS)’
- Prof. Carolyn Young, consultant neurologist at the Walton Centre is leading the study.
- The final paper will be presented to the European Post Polio Conference which is being held on 31st August – 2ndSeptember in Copenhagen.
- British Polio Month runs from 1st-31st July
About the British Polio Fellowship A Registered charity in England and Wales 1108335, and in Scotland – SCO38863
The British Polio Fellowship seeks to empower and support all people in the UK living with the effects of Polio
and Post Polio Syndrome by:
- actively campaigning in support of their rights and needs and those of their carers.
- providing information, advocacy, welfare and support to enable people to live full independent and integrated lives and being the first resource on Polio and Post Polio Syndrome.
- supporting a Regional / Branch / Group structure that enables mutual support amongst members to be carried out in a caring and inclusive environment.
- raising the profile of The British Polio Fellowship to enhance its effectiveness and to seek out all those who may benefit from our services.
- developing worldwide alliances with other Polio and Post Polio groups for the mutual benefit of all its members.
The British Polio Fellowship is a charitable organisation that does not receive any government funding. It relies entirely on membership fees, donations and funding activities to continue providing these services.
Membership to the British Polio Fellowship is only £25.00 for life. Members benefit from a free support and information helpline, holiday, heating and welfare grants, an information library, a bi-monthly magazine the bulletin and a network of Branches and Groups for support and social contacts.
Post Polio Syndrome is classified (G14) by the World Health Organisation (WHO) as a disease of the central nervous system that is “an irreversible and incurable clinical situation in relation to the progressive dysfunction of the motor units.”