We’d love to hear about your experience of accessing care for muscle wasting conditions – whether you accessed it yourself or for someone you care for. It could have been an excellent experience or fallen short.
We’re calling for people living with a muscle wasting condition to get faster, better, and equitable access to healthcare services and treatments.
Across the UK, access to good healthcare services is a postcode lottery for our community. Some people receive excellent care but many others struggle to access the services and support they need.
Making health systems work better begins with recognising what isn’t working and learning from what is.
We want everyone to benefit from the best care possible, no matter where in the UK they are.
Living with a rare condition can be challenging
While some people benefit from excellent healthcare, this isn’t consistent across the UK.
Services for people with neurological conditions, such as muscle wasting conditions, are overstretched and underfunded.
Too many people experience delays in treatment and care
Because they’re living with a rare condition, it often takes longer to be diagnosed, and some healthcare professionals they work with don’t know anything about their condition.
What we’re calling for
- A sustainable funding settlement for the NHS in England, Scotland and Wales and the Health and Social Care Northern Ireland, to ensure it’s appropriately resourced to deliver specialist health services.
- Better support for health care staff, including by expanding the neurological workforce and addressing shortages in key specialisms, such as neuromuscular care advisors.
- Health commissioners and system leaders to adopt the principles of the ‘Optimal clinical pathway for adults with Neuromuscular Disorders.‘ This will help improve the quality of services and drive better health outcomes.
- The UK government to commit to renewing the UK Rare Diseases Framework after the current one comes to an end in January 2027.
- Greater investment in workforce education to provide non-neuromuscular specialist healthcare professionals with better awareness and skills in understanding muscle wasting conditions.
