MPs Put Spotlight On Specialist Care, UK
The Inquiry, being undertaken by the All Party Parliamentary Group for Muscular Dystrophy (APPG) will focus on access to specialist multi-disciplinary care; commissioning and funding; workforce planning and the role of care co-ordinators.
The APPG investigation follows a number of hard hitting reports published by the Muscular Dystrophy Campaign, which reveal that life expectancy and quality of life is being seriously affected by a 'postcode lottery' in service provision.
A recent patient survey of 1,000 people revealed that half of patients with muscle disease rate their experience of the diagnosis process as poor; while over 50% of patients have no access to a specialist neuromuscular consultant. There are 60,000 people in the UK with muscular dystrophy or a related neuromuscular condition.
The APPG includes Lord John Walton, ex-president of the British Medical Association and the General Medical Council, as well as Baroness Celia Thomas, front bench Opposition Spokesperson, who has limb girdle muscular dystrophy.
Over the next six months, the Group will seek evidence from:
- patients and their families;
- health and social care professionals;
- scientists and Researchers;
- specialised Commissioning Groups across England;
- officials from the Department of Health;
- professional bodies;
- the Neuromuscular Centre in Cheshire;
- representatives from the devolved countries
The Inquiry comes three years after the introduction of the Government's National Service Framework for Long Term Conditions, which pledged to improve quality of life and independence for people living with chronic conditions.
On the panel at today's first oral evidence session, will be: Professor Mike Hannah, Consultant Neurologist at the Institute of Neurology, London; Dr David Hilton-Jones, Consultant Neurologist at the John Radcliff Hospital, Oxford; Michelle Eagle, Consultant physiotherapist at the Newcastle Muscle Centre and Dr Stephen Lynn, Project Manager for Treat NMD, Newcastle.
Commenting on the Inquiry, Chair of the Group Dave Anderson MP, said:
"It's shocking that so many families living with muscular dystrophy are not getting the care they need.
"This Inquiry will uncover gaps in service provision; and the immediate steps that need to be taken in order to improve care received by families and patients."
Attending today's evidence session and providing oral evidence, Dr David Hilton Jones, Consultant Neurologist at the Oxford Specialist Muscle and Nerve Centre, said:
"I hope that the MPs and Peers listening to today's evidence will understand the importance of patients receiving multi-disciplinary care provided by specialist centres such as Oxford.
"Too often people living with muscle disease are denied access to this kind of specialist care, advice and support."
Chief Executive of the Muscular Dystrophy Campaign, Philip Butcher, said:
"Families and patients from across the UK are delighted that the All Party Group has decided to launch this important Inquiry.
"The urgency of this Inquiry is underlined by the lack of a NICE guideline for muscular dystrophy and related muscle diseases.
"We hope that the Government and NHS commissioners across the UK sit up and take note of the group's forthcoming recommendations."
The APPG is calling on interested parties to submit evidence by February 2009. In order to submit evidence, please visit http://www.muscular-dystrophy.org.
The Muscular Dystrophy Campaign is the leading UK charity focusing on all muscle disease. It invests £3 million a year in free care support services, research, campaigning for change and grants towards the provision of equipment, such as wheelchairs. It has pioneered the search for treatments and cures for 50 years and provides practical, medical and emotional support to people affected.
- The Muscular Dystrophy Campaign is the Secretariat for the APPG on Muscular Dystrophy
- Twenty Qualifying Members of the APPG:
Dave Anderson MP (Chair); Tim Boswell MP (Vice- Chair); Dr Hywel Francis (Secretary); John Robertson MP; Alan Milburn MP; Dr Ian Gibson MP; Neil Gerrard MP; Tom Harris MP; Mark Lazarowicz MP; Tom Clarke MP; Madeleine Moon MP; Tim Boswell MP; Bob Spink MP; Graham Brady MP; Mark Simmonds MP; Earl Howe; Baroness Thomas of Winchester; Mike Hancock MP; Dr Evan Harris.
- Chair of the Group, Dave Anderson MP, has tabled an Early Day Motion with cross party support to coincide with the launch:
That this House welcomes the launch of an Inquiry into neuromuscular services by the All-Party Parliamentary Group for Muscular Dystrophy; notes that the Inquiry seeks to identify areas of best practice and gaps in service provision; acknowledges the importance of an Inquiry after the publication of recent reports by the Muscular Dystrophy Campaign revealing unacceptably wide geographical variations in the quality of and access to service provision; notes that access to multidisciplinary specialist care improves overall health outcomes and survival for patients with neuromuscular conditions; is deeply concerned that some patients are being denied access to essential health and social care services; and encourages the Department of Health to provide evidence to the Inquiry.
- More than 60,000 people in the UK have muscular dystrophy or a related muscle disease. A further 300,000 people are affected indirectly as parents, siblings or carers.
- Muscle diseases weaken and/or waste muscles. The conditions can be inherited or acquired and can affect people of all ages, backgrounds and nationalities. There are currently no cures.
Muscular Dystrophy Campaign
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