Greater awareness among non-neuromuscular specialists is crucial to our community, living with muscle wasting and weakening conditions, receiving the right care and support – in emergencies it can even save lives. We’re calling on the next Government to promote on-going professional development and upskilling of all health professionals around rare diseases and muscle wasting and weakening conditions.
We’re calling for the next Government to increase knowledge of muscle wasting and weakening conditions among non-neuromuscular specialist healthcare professionals
The best care and support for people with muscle wasting and weakening conditions involves a wide range of healthcare professionals outside of neuromuscular specialist centres. Many have limited experience or training to support medical diagnosis and appropriate referrals for the rare muscle wasting conditions our community live with – often professionals outside of neuromuscular care have never heard of these conditions. This can leave individuals and families at a loss, and unsure where to turn.
It can be frustrating and draining to have to explain your condition at every new appointment, and to constantly struggle to get the support you need.
“When doctors listened to my breathing, they had always dismissed me and said my lungs sounded fine. But when I was eventually referred to a specialist, they discovered I couldn’t breathe out carbon dioxide. The problem was with my diaphragm and not my lungs. I was given a Bipap, which is a breathing machine, and the improvement was incredible and instant, but it took a long time to get this relief.” John, living with Pompe disease
It can be harmful, and lead to people receiving the wrong advice, exercises or equipment. In emergency situations, lack of awareness can be dangerous and deeply distressing for individuals and their loved ones.
Across the four nations the UK Rare Diseases Framework recognises awareness as a crucial step to improving diagnostic journeys and the delivery of care. Much more needs to be done over the next Parliament to make this ambition a reality.
Our 2023 community survey brought this issue further into the spotlight. The top priority, shared by 84% of respondents was increasing the understanding and awareness of muscle wasting and weakening conditions, and we’re working to address that.
For over half of our respondents (55%), it took four or more meetings with healthcare professionals to get a diagnosis, and almost half of our respondents (47%) were misdiagnosed at some point, often causing untold distress and delaying vital access to the most appropriate care, treatment and support. Awareness is crucial at every point in the journey, including getting a timely diagnosis. How can non-neuromuscular specialist healthcare professionals refer people to the right tests and pathways if they don’t know what to look for?
I’d had a curved spine since I was a young child and went my whole life being told I just had scoliosis. When I fell pregnant at 23, I was referred to Oxford University Hospital’s special maternity unit as I was classed as a high-risk pregnancy. They told me in my first appointment they thought I had more than just scoliosis. At 18 weeks pregnant I was diagnosed with Bethlem Myopathy. It’s shocking to be diagnosed with a condition. But to be pregnant at the same time − I was terrified. Naomi, living with Bethlem myopathy.
We know that healthcare professionals do an incredible job in often challenging environments. So, we’re working hard to empower them to be confident, informed and better equipped to deliver the care and support our community deserves.
We provide free online courses for a wide variety of healthcare providers, including GPs, nurses, physiotherapists and occupational therapists. We also host targeted events, such as our upcoming webinars for GPs and A&E professionals. And we fund and support local upskilling events, connecting specialist centres to community care providers through our regional neuromuscular clinical networks.
We also provide condition-specific alert cards to our community, equipping them with crucial information for emergency situations. These wallet-sized cards are developed by a multi-disciplinary team of neuromuscular specialists to ensure up-to-date, accurate and reliable guidance. They provide essential recommendations and precautions to inform healthcare professionals without specialist neuromuscular knowledge.
We’ll continue to do everything in our power to improve awareness of muscle wasting and weakening conditions. However, we need support from the next Government to drive this life-saving progress further and faster.
We’re calling on the next Government to deliver five key priorities for our community. One of these is to promote on-going professional development and upskilling of all health professionals around rare diseases and muscle wasting and weakening conditions.
- We’re asking for greater investment in workforce education to provide non-neuromuscular specialist healthcare professionals with more time, capacity and incentive to complete rare disease training modules.
- We’re asking for greater collaboration with the NHS on rare condition alert cards. By working together, we can increase their visibility and give more healthcare professionals the confidence to act on their critical insights, especially in emergencies.
These measures will help ensure people with muscle wasting and weakening conditions can access the right care, treatment and support at every stage of their journey.
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 living with muscle wasting and weakening conditions.
- Read more on our general election hub 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.
- Learn more about the findings from our 2023 community survey and how we’re using it to shape our work.
- Are you a healthcare professional looking to upskill? Access our free resources, e-learning and events for professionals
- Get in touch with us at campaigns@musculardystrophyuk.org if you have any questions or would like to get involved.
- Sign up to our monthly e-newsletter and be the first to hear about our latest news, campaigns, research and ways you can support us.
