Local MP backs new campaigning group in the North West

9.21.00am BST (GMT +0100) Mon 29th Jun 2009

Local Member of Parliament for Manchester Withington, John Leech, has this week tabled a motion in Parliament supporting a new campaigning network in the North West, which will focus on improving access to local essential NHS services for the estimated 6,500 children and adults living with severe muscle-wasting conditions.

John Leech, together with leading clinicians in the North West and the Muscular Dystrophy Campaign, is calling on the North West Specialised Commissioning Group (SCG) to carry out an urgent review of services.

John Leech said:

"It's shocking that many families living with muscle disease in my constituency and across the North West are not able to access the right care, expertise and specialist support."

The network's launch meeting, which took place this week, has kick started the campaigning activities of the North West Muscle Group.

To coincide with the launch of the group, the Muscular Dystrophy Campaign has published a new clinician-led report on specialist services in the region, which reveals that local patients are losing out in a postcode lottery of care services and being denied necessary health and social care services.

Ben Dale, who has muscle disease and who is also one of John's constituents, attended the launch meeting, and said:

"As a member of the new campaigning Group, I'm delighted to have John backing our campaign."

"Too often local patients are being denied services, such as ongoing physiotherapy, which is essential in maintaining mobility and independence."

Dr Stefan Spinty, Consultant Paediatric Neurologist, and Neuromuscular lead clinician at the Alder Hey said:

"There have been enormous advances in research in recent years, leading to very much improved diagnostic techniques, more comprehensive and sophisticated surveillance and treatment options for individuals affected by neuromuscular conditions."

"In light of these changes it seems timely to review existing specialist neuromuscular services in the North West to ensure that all people affected by these conditions receive the best possible care."

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Notes to Editors:

1. John Leech MP's motion, Early Day Motion 1704: NORTH WEST MUSCLE GROUP AND NEUROMUSCULAR SERVICES, states:

That this House welcomes the launch of the North West Muscle Group; notes that the new group is led by local families and people affected by muscular dystrophy and related neuromuscular conditions who will campaign to improve access to essential specialist care and support; is concerned to learn of the serious problems affecting the 6,500 people with muscular dystrophy and related neuromuscular conditions living in the North West, further notes that access to multi-disciplinary specialist care improves overall health outcomes and survival for patients with muscular dystrophy and related neuromuscular conditions; is deeply concerned that some patients are being denied access to multi-disciplinary specialist care; calls on the North West Specialised Commissioning Group, local primary care trusts and the Strategic Health Authority to take forward a review of neuromuscular services which will identify areas of best practice and gaps in NHS service provision; and praises the campaign led by the Muscular Dystrophy Campaign, local families, health professionals and experts in these conditions who will work together to fight for good access to clinically effective, first class, specialised neuromuscular services across the North West region.

2. Key findings of the report include:

· Three out of four patients and their families have no access to a key worker or care co-ordinator. 6.5 Regional Care Advisors are needed to serve the estimated 6,500 people in the area with a neuromuscular condition

· Two fifths of patients in the North West state that they do not receive enough physiotherapy. Patients have very limited access in particular to ongoing physiotherapy.

· There is no dedicated psychology service for neuromuscular patients despite its importance as part of care for this patient group with rare and very rare progressive conditions

3. More than 60,000 babies, children and adults in the UK have muscular dystrophy or a related condition. A further 300,000 people are affected indirectly as family, friends or carers.

4. Muscle diseases cause muscles to waste and weaken making it hard for those affected to do even the simplest of tasks. The conditions don't just affect the muscles in the arms and legs but the heart and respiratory muscles too. There are no cures and many affected children don't live to reach adulthood.

5. The Muscular Dystrophy Campaign is marking its 50th anniversary in 2009.

6. The Muscular Dystrophy Campaign is Tesco Charity of the Year 2009 which aims to raise £3 million as part of the Giving children equipment to be independent campaign. The money raised will fund vital, specialist equipment for children aged 19 years and under with muscular dystrophy and related muscle diseases. Over 8,000 babies and children in the UK have a muscle-wasting condition.