MPs and peers have accused the NHS of failing people with muscular dystrophy after an inquiry uncovered a postcode lottery in life expectancy and access to provision, and uncertain funding for services.
The all-party group on muscular dystrophy called on the Department of Health and the UK’s devolved governments to end “years of under-investment and weak co-ordination” of care by providing access to specialised, multi-disciplinary services to the 60,000 people with neuromuscular conditions.
It uncovered a lack of service and workforce planning and said the current lack of National Institute for Health and Clinical Excellence (Nice) clinical guidelines for muscular dystrophy was “totally unacceptable”.
Too much reliance on charities
The inquiry said it was a “matter of great concern” that most people with neuromuscular conditions did not have a named care co-ordinator with just 13 posts across the UK, instead of the 60 that would be required.
It also said the NHS was “relying far too heavily on charitable funding for key worker posts”, with eight out of the 13 funded by the Muscular Dystrophy Campaign (MDC). The MDC told the inquiry that it would not be able to continue funding the posts after next year because of the impact of the recession.
‘Shocking differences’ in life expectancy
The Walton Report, named after MDC’s honorary life president and all-party group member Lord Walton of Detchant, also highlighted “shocking differences” in the life expectancy of people with muscular dystrophy in different parts of the country.
In the North East of England, patients with Duchenne muscular dystrophy are living until 30 on average, but those in the South West are dying aged 19. It said overall the UK lagged behind other European countries in terms of life expectancy, including Denmark and the Netherlands, where specialist, multi-disciplinary care was the norm.
Patients and their families were forced to pay for vital physiotherapy – “something unheard of in many other European countries” – and faced “unacceptable delays” in receiving wheelchairs and other essential equipment, the report added.
The report said each of the 10 NHS specialised commissioning groups in England, and the three devolved countries, should appoint named muscular dystrophy leads responsible for service development.
It also called for Nice to produce guidelines on muscular dystrophy and for the DH and the NHS to produce a five-year plan to appoint 60 care co-ordinators by next March.
Philip Butcher, chief executive of the MDC, said: “The Muscular Dystrophy Campaign has been urging the Department of Health, ministers and leading officials to improve this situation for a long time. I hope that the Walton Report will help to put pressure on the NHS to start providing the standard of care that these patients so dearly need and deserve.”