MPs and peers have accused the NHS of failing people with muscle-wasting disorders such as muscular dystrophy.
Care for sufferers was often “inadequate and not acceptable”, with huge variations in life expectancy across the country, according to members of the all-party parliamentary group on muscular dystrophy.
The group’s report revealed that MD sufferers often face a long wait for equipment such as wheelchairs and may be forced to pay for treatments such as physiotherapy.
More than 60,000 babies, children and adults in the UK are affected by one of the 60 forms of the disorder.
The report also accused the NHS of relying “far too heavily” on charitable funding for key worker posts, with eight out of the 13 funded by the Muscular Dystrophy Campaign.
MDC chief executive Philip Butcher said: “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.”