People with muscle disease die too early because of a lack of specialist care, according to the first patient survey on the condition.
Services are a “postcode lottery” with half of patients unable to access a physiotherapist or specialist consultant and rating their experience of the diagnostic process as poor or very poor.
The survey, by the Muscular Dystrophy Campaign, also found families and patients were being denied access to emotional support, leaving more than half dissatisfied.
Health and social care services for people with the condition are “patchy, complex and confusing”, with three out of four people missing out on the help of a care co-ordinator, whose role is to support and guide them through the system.
The survey of 4,000 people with muscle disease follows the government’s national service framework for long-term conditions three years ago, which pledged to improve quality of life and independence for people living with chronic conditions.
Philip Butcher, chief executive of the Muscular Dystrophy Campaign, said there were “significant inequalities” in access to vital specialist care which were a “matter of life or death” for some families.
“Their plight is made worse by the considerable delays and variations in the provision of essential equipment and the barriers that exist to living independently,” he said.
Specialist service call
Butcher called on the NHS and local authorities to create 50 more care co-ordinator posts and for the government to establish a specialist neuromuscular service.
Liberal Democrat health spokesperson Norman Lamb MP, said the survey showed the “shocking lengths” families were forced to go to find the care they needed.
“Despite the government’s numerous published commitments to ensuring patients with chronic conditions can access the right care and support, it is clear from today’s report that this simply isn’t happening for thousands of families across the UK,” he said.
There are 60,000 people in the UK with muscle disease and only 12 muscular dystrophy care advisers or key workers.