LORELY BACKS MUSCULAR DYSTYROPHY CAMPAIGN FOR WEST MIDLANDS

3.08.38pm BST (GMT +0100) Mon 27th Apr 2009

Solihull's MP Lorely Burt has tabled a motion in Parliament to mark the launch a new campaigning network in the West Midlands which will focus on improving access to essential NHS services for the 5,000 children and adults living with severe muscle-wasting conditions.

The launch meeting, taking place in Worcestershire, kick starts the campaigning activities of the West Midlands Muscle Group. The group's first priority will be to lobby NHS Commissioners to ensure that the promised review of neuromuscular services in the region is carried out as a matter of urgency.

To coincide with the launch of the West Midlands Muscle Group, the Muscular Dystrophy Campaign will be publishing a new clinician-led report on specialist services in the West Midlands, which reveals that local patients are losing out in a postcode lottery of care services and being denied necessary health and social care services.

Building on the Foundations: the need for a neuromuscular network in the West Midlands reveals:

• families are being forced to wait up to one and half years for powered wheelchairs, more than four times the Government's target of18 weeks;

• specialist clinical posts are being funded by charities and not embedded within the NHS, making the posts extremely vulnerable;

• there is only one Muscular Dystrophy Care Adviser in post to serve 5,000 patients across the entire region; at least four more positions are urgently needed;

• one in three patients do not see a physiotherapist, whose support is vital in maintaining independence and mobility for these long term conditions.

Call to action: The Muscular Dystrophy Campaign, together with the West Midlands Muscle Group, is calling on the local NHS Specialised Commissioning Group and Strategic Health Authority to take forward their plans of a service review as a matter of urgency.

Commenting on the launch, Lorely Burt MP, who has pledged to throw her weight behind the campaign to improve services for vulnerable families, said:

"Having met with local patients campaigning for improvements in access to specialist care, I will do all I can to ensure the local Muscle Group receives support in Parliament.

"All families living with muscle disease in the West Midlands should be able to access the right care, expertise and specialist support."

Commenting on the report and launch event in Worcester, Chair of the new West Midlands Muscle Group, Jane Field, whose son Murray has Duchenne muscular dystrophy, said:

"I'm delighted to have been given the opportunity to lead the fight against muscle disease in the West Midlands.

"Too often families like mine are forced to go without ongoing, specialist care. By joining forces with other families and people living with muscle disease in the West Midlands, we will campaign to ensure neuromuscular services are seen as a priority for local NHS decision makers.

Co-author of the report, Dr Ros Quinlivan, Consultant Pediatrician with a special interest in Neuromuscular Disease at the Wolfson Centre in Oswestry, said:

"Access to specialist care can prolong and improve the quality of life. Because of the enormous advances in research, leading to improved diagnosis and treatment, the time has come to ensure that all people affected by these conditions receive the best possible care."

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.

For more information about the work of the Muscular Dystrophy Campaign please contact Sal Lalji, PR Manager, on 020 7803 4844, mobile: 07827 241 043 or email: s.lalji@muscular-dystrophy.org