Thursday 23 April 2009
West Midlands campaign a "cauldron of fire"
The Muscular Dystrophy Campaign has launched a new regional campaigning network - the West Midlands Muscle Group. Its members believe the campaign will be a "cauldron of fire" for driving forward improvements in access to essential NHS services for the 5,000 children and adults living with muscle disease in the region.
The launch meeting kick started the campaigning activities of the West Midlands Muscle Group. 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 neuromuscular service review as a matter of urgency.
The Muscular Dystrophy Campaign has published a new clinician-led report on specialist services in the West Midlands, Building on the Foundations: the need for a neuromuscular network 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.
Commenting on the report and launch event, 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 Paediatrician 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.
Local MP for Solihull, Lorely Burt, has tabled a motion in Parliament about the new West Midlands Muscle Group and pledged to support the campaign, saying:
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.
