Joan Calls for Better Muscle Disease Care

As talks between West Midlands Primary Care Trusts about investment into muscle disease services reach a critical point, Joan has this week thrown her weight behind the fight for better healthcare in the West Midlands.

She has added her signature to Early Day Motion (EDM) 775, Neuromuscular Care, in Parliament expressing support for investing in healthcare for muscular dystrophy patients.

PCTs have been discussing a £1.2 million pound investment in these services over the last few months and are expected to make a decision in the next week. The money is to come from the budget PCTs already have.

Currently, the West Midlands spends £6.6 million on emergency hospital admissions for muscle disease patients every year, but if £1.2 million was invested in preventative healthcare for these conditions the number of emergency admissions would be dramatically reduced, saving money in the long term.

As stated in the EDM, muscle disease patients without specialist preventative care are 20 times more likely to end up in an emergency admission to hospital than those who have been receiving specialist healthcare.

Joan said:

“This investment by the PCTs in preventative care for muscle diseases is vital for our region. With the money it could save us in the long term, it seems only common sense that they should commit to investing in these services.

“These patients are sorely lacking in services like physiotherapy that would make such a difference to their lives, and it’s about time we committed to changing this situation in Stoke-on-Trent North and across the West Midlands.

“I fully support the campaign to improve healthcare for West Midlands muscle disease patients and believe this investment by the PCTs would be a big step forward in achieving better results.”

Campaigning mum Jane Field from Droitwich in Worcestershire, whose son Murray has Duchenne muscular dystrophy, said:

“Patients and their families, as well as clinicians from across the region, have invested a huge amount of time and effort in this NHS review.

“We are on the verge of a major breakthrough in the way care is delivered to families like ours – but the plans will get completely derailed unless PCTs sign up to the proposals.”

The Muscular Dystrophy Campaign’s Head of Policy and Campaigns, Nic Bungay, said:

“We are within touching distance of making better healthcare services for West Midlands muscle disease patients a reality.

“The investment in preventative care by the PCTs would have a huge effect in the region and really improve the quality of life of muscle disease patients in the West Midlands.”

To find out more about muscle disease healthcare in the West Midlands and the work of the Muscular Dystrophy Campaign go to www.muscular-dystrophy.org.


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.


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For more information about the work of the Muscular Dystrophy Campaign please contact Katie Archer, press officer, on 020 7803 4832, mobile: 07827 953 149 or email: k.archer@muscular-dystrophy.org

Notes
• More than 70,000 babies, children and adults in the UK have muscular dystrophy or a related condition. A further 350,000 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 respiratory muscles too. There are no cures and many affected children don’t live to reach adulthood.

• Lorely Burt MP’s Early Day Motion 775, Neuromuscular Care, states: “That this House calls on the NHS West Midlands Specialised Commissioning Group to accept the approve the clinician endorsed Neuromuscular Strategy; notes that the strategy was commissioned and produced by their own Specialised Commissioning Team with the input of patients and the Muscular Dystrophy Campaign; welcomes the recommendation to save up to £6.6m spent annually on unplanned emergency admissions for people living with rare and very rare muscular dystrophy and related neuromuscular conditions; expresses concern that clinicians estimate that patients who do not receive specialist neuromuscular care are twenty times more likely to have to be admitted into hospital as an emergency than those who receive timely preventative care; and calls on the government to urge regional NHS decision-makers to take the action necessary to ensure that everyone living with neuromuscular conditions across the West Midlands has access to specialist multidisciplinary care.”

• 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.