PARLIAMENTARY EARLY DAY MOTION
MUSCULAR DYSTROPHY CAMPAIGN NATIONAL PATIENT SURVEY (30 January 2013)

That this House welcomes the publication of the Muscular Dystrophy Campaign's 2013 National Patient Survey report State of the Nation which finds that patients with rare diseases are being put at serious risk of misdiagnosis, and fatal cardiac and respiratory problems are going unmonitored; notes the report's findings revealing major delays in receiving vital checkups owing to a complete inconsistency in NHS care and support for people with muscular dystrophy and related neuromuscular conditions; is concerned that this can lead to costly unplanned admissions to hospital which could be avoided; acknowledges the findings of the audit of unplanned emergency admissions led by Professor Michael Hanna; further notes the need for the lead for neuromuscular services to continue in post after April 2013; calls on the Government to ensure that the NHS Commissioning Board implements new NHS guidelines contained in service specification for neuromuscular services; and further calls on the NHS Commissioning Board to support the development of operational delivery networks for neuromuscular services with a view towards reducing costly unplanned emergency admissions.

Sponsored by:
Mr David Anderson (Labour)