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We’re calling for people living with a muscle wasting and weakening condition to get faster, better and more equitable access to NHS services and treatments.

Investing in staff and facilities is critical to improving access to the many NHS services and treatments which people living with muscle wasting and weakening conditions rely on each day.

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We know our community has a wide range of health needs, requiring multi-disciplinary care from a range of specialist and community services. That people require coordinated, patient-centred care, including specialist consultants, allied health professionals, mental health professionals and care co-ordinators called neuromuscular care advisors. We believe all people living with a condition should be able to access multidisciplinary care, diagnostics and clinical services no matter where they live in the UK, and it’s essential the next Government develops a sustainable funding settlement for the NHS to enable this.

“Because of the lack of available NHS neuro-physio facilities, I haven’t received effective physiotherapy since I was 15.

“The local community physio has no experience with supporting someone with muscular dystrophy.”

I was even told during a visit that I should easily be able to move in ways that I physically couldn’t. The only way I can access in-person physiotherapy is by paying privately. I find hydrotherapy very beneficial but it’s so expensive.” Sara, living with rigid spine syndrome muscular dystrophy

Our Centre of Excellence (CoE) Awards programme audits neuromuscular services and recognises the high-levels of clinical and research achievement services provide. Around the country, some people living with muscle wasting and weakening conditions have access to services which provide outstanding care, promote best practice and have demonstrated their commitment to improving health and care for our community.

Unfortunately, not everyone benefits from the same level of care, as not everyone lives within a region with one of those centres. For those who are fortunate to be seen at specialist centres, they can often still face barriers to the best possible care as many centres struggle with chronic underfunding and staff shortages. While our audit results recognise the fantastic NHS care provided to members of our community, we want to help even more centres achieve the highest recognition and help to widen access to the best care possible.

But health services across all four nations are already under significant pressure as  care needs continue to rise. This is the backdrop of the general election. Many public sector services, including health and social care, are struggling with a lack of funding and resources. To make sure our voices are heard and our community’s needs are met, we’re working to raise awareness of muscle wasting and weakening conditions, and calling for more investment in the vital services our community rely on.  

“Since the recessions and cuts to public services, I’ve seen a massive downturn in what the NHS can provide.

“The average wheelchair they offer now is far from suitable.”

It didn’t allow me to live an active or inclusive life in any way really.” Sam, living with spinal muscular dystrophy type 3.

Findings from our 2023 Community Survey reveal that access to healthcare is a leading policy priority area for our community. Within healthcare, ‘ensuring timely and equitable access to healthcare services’ was the most important area raised to bring about change to better support people living with muscle wasting and weakening conditions.

Nearly 1 in 2 (45%) of our survey respondents living with a muscle wasting and weakening condition said they didn’t feel in control of their physical healthcare, and 1 in 4 said they didn’t feel in control of their mental healthcare. This was down to many reasons, including a lack of broader awareness of the conditions, delays in diagnosis or the disjointed care too many of us have come to experience.

“It took years of therapy, and starting anti-anxiety medication, to reach a place in which I was able to cope with my situation. Every therapist I spoke to said that it was understandable given what I had been through and will experience in the future. I couldn’t help but think, if that’s true, why aren’t we offered mental health support, or even warned about the need for our parents to monitor our mental state, at any point growing up?” Becca, living with spinal muscular atrophy type 2.

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While we’re already working to identify and address some of these root causes, the broader system needs investment. Solutions to improving access to healthcare should include patient-centred care, because we know it’s key to improving health outcomes and promoting independence, which is so important for disabled people.

We’re calling on the next Government to deliver five key priorities for our community. One of these priorities is to improve access to NHS services and treatments.

In addition to a more productive health system, more money and staff need to be considered as part of the wider solution. This is why the next Government should develop a sustainable funding settlement for the NHS, to ensure it is appropriately resourced to deliver specialist health services.

The Government should also better support NHS staff, including by expanding the workforce and addressing shortages in key specialisms, such as neuromuscular care advisors.

They should also ensure accessible environments for disabled people, for example by having hoists in clinics, Changing Places toilets and outreach and mobile specialist clinics. Home visits for patients who often struggle to travel long distances should not be forgotten.  

The next Parliament will be a critical time to ensure existing shortcomings in the provision of care do not become part of the new normal. We are ready to work with the new Government, NHS and other delivery partners, with renewed urgency, to provide health and care services the necessary support so that patients and their families can continue to access the best care possible.

Find out more about our work and where to get support

  • See our full general election 2024 manifesto to find out what else we’re calling on the next Government to deliver for people with muscle wasting and weakening conditions.  
  • Read more on our general election hub page to find out how you can participate and engage with your future representatives.  
  • Find out more about our campaign work to improve the quality of life for people affected by muscle wasting and weakening conditions, to ensure access to the best possible holistic support. Visit our website to read more about our Centre of Excellence Awards.
  • We also have dedicated resources for healthcare professionals. You can find out more about upskilling opportunities, how we work with regional neuromuscular networks and information for your patients.
  • Learn more about the findings from our 2023 community survey and how we’re using it to shape our work.

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