I Am Writing As a Constituent Living with Muscle Disease / a Supporter of the Muscular

Dear XX MP,

I am writing as a constituent living with muscle disease / a supporter of the Muscular Dystrophy Campaign to ask for your support as the Specialised Commissioning Groups (SCGs) begin a national programme of work around neuromuscular services. The SCGs are the regional bodies responsible for planning and commissioning specialised services for people with rare conditions, including neuromuscular conditions.

There are approximately 60,000 people across England living with more than 60 different types of neuromuscular conditions. These are rare and very rare conditions that can be genetic or acquired, and can present in childhood or adult life. Neuromuscular conditions can cause muscle weakness or wasting. They are multi-system disorders that require complex long-term care. There are currently no known cures or treatments. Without multidisciplinary care, most patients experience a reduction in quality of life and, for some conditions, shortened life expectancy.

The ten regional NHS Specialised Commissioning Groups (SCGs) and the National Specialised Commissioning Team met in January this year to take stock of the current position across the country with regard to neuromuscular services. At this meeting, they agreed a national programme of work around neuromuscular services for the year ahead.

Each SCG will nominate a multidisciplinary team to take on a range of pieces of work to look at what improvements can be made to neuromuscular services across England. The outputs of this work will be used to support a national approach to the commissioning of specialised neuromuscular services.

I would be grateful if you could write to the Secretary of State for Health, Andrew Lansley, and our regional SCG to ask them to:

·  take steps to ensure this positive work translates into real action on the ground;

·  make sure that this vital progress is not delayed by health service reform or the economic climate, and;

·  work together to make sure that patients and their families are fully involved in the process.

If you would like any further information, or a template letter, please contact Jonathan Kingsley at the Muscular Dystrophy Campaign on 020 7803 4839 or at .

I look forward to your reply.

Yours sincerely,

XX