Inequitable service provision for muscular dystrophy

6 December 2007

A new report from the Muscular Dystrophy Campaign, a UK charity, presents evidence that “patients with neuromuscular diseases are faced with a fragmented, sub-standard system of care, with significant variations in survival across the UK” (see press release). The majority of neuromuscular diseases are inherited, genetic forms, including Duchenne Muscular Dystrophy (DMD), Becker Muscular Dystrophy (BMD), Charcot-Marie-Tooth disease, and myasthenia gravis.

The new report, Building on the Foundations: Establishing a Specialist Neuromuscular Service across England, notes that the average survival of DMD patients ranges from 18 years in the South West and 30 years in the North East, with serious inequality of access to specialist services for patients from different regions. The report also says that some patients do not receive an accurate genetic diagnosis or advice on risk of disease in future pregnancies, citing the example of a patient who only discovered that he had BMD when he attended a specialist centre for the first time more than ten years after becoming ill, and found that contrary to earlier medical advice that his condition was not hereditary, his two daughters were both carriers for the disease.

Report co-author Professor Mike Hanna of the Institute of Neurology commented: "Too often specialist care is vulnerable and heavily dependent on a handful of leading clinicians with a research interest in this field, rather than embedded in a properly resourced, long term service". The Muscular Dystrophy Campaign is calling on the Department of Health to provide adequate specialized service provision via multi-disciplinary teams to all patients with neuromuscular diseases.

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