Local MP Backs Muscle Campaigning Group, As Vulnerable Patients Launch Petition
A new petition was launched at the meeting to enable families to gather support in the fight for improved services in the region. Patients, their families and friends will work together to collect signatures which will be presented to the local NHS authorities.
The Muscular Dystrophy Campaign, together with leading clinicians in the region, is calling on the North West Specialised Commissioning Group (SCG) to carry out an urgent review of services.
Families and patients discussed their problems with accessing services, which included:
- Physiotherapy is vital for patients with the condition, yet despite this one lady was refused the service from her local hospital and told 'there is no point';
- Patients are often forced to pay privately for essential sessions in hydrotherapy pools;
- There is a huge decline in services in the region when patients reach adulthood;
- Families and patients have joined forces to petition NHS decision makers to address these problems urgently.
Commenting on the meeting, John Leech, who has also tabled a motion in Parliament about the North West Muscle Group, said:
I was shocked to learn about the problems faced by local patients living with muscle disease.
It's clear that the NHS Specialised Commissioning Group need to review services in the region, given the lack of essential specialist services like physiotherapy.
Also attending the meeting and panel discussion, Director of Policy at the Muscular Dystrophy Campaign, Robert Meadowcroft, said:
All families living with muscle disease across the region should be able to access the right care, expertise and specialist support.
With the backing of this new campaigning Muscle Group, and with names being gathered for a mass petition, we hope that we can improve the way specialist care is provided in the region.
The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. It has pioneered the search for treatments and cures for 50 years, and is dedicated to improving the lives of all people affected by muscle disease.
It funds world-class research to find effective treatments and cures; provides free practical and emotional support; campaigns to raise awareness and bring about change and awards grants towards the cost of specialist equipment.
John Leech MP's motion 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.
- More than 60,000 people in the UK have muscular dystrophy or a related condition. A further 300,000 people are affected indirectly as family, friends or carers.
- 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 lungs too. There are no cures and many affected children don't live to reach adulthood.
- The Muscular Dystrophy Campaign is marking its 50th anniversary in 2009.
Muscular Dystrophy Campaign
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