We’re calling on the Government to deliver five key priorities for our community.
Send our manifesto to your MP and explain why #MusclesMatter
We’re calling for faster, better and more equitable access to NHS services and treatments.
Our community survey showed that nearly 1 in 2 (45%) people living with a muscle wasting and weakening condition do not feel in control of their physical healthcare, and 1 in 4 people don’t feel in control of their mental healthcare.
Our community of over 110,000 people have a wide range of health needs, requiring multi-disciplinary care from a broad range of specialist and community services, to provide coordinated, patient-centred care. Which is why it’s essential the next Government develops a sustainable funding settlement for the NHS to:
Everyone should be able to access the services and treatments they need, regardless of where they live.
We’re calling for the Government to review disability benefits, fix the issues within Personal Independence Payments, and improve Access to Work.
Our community survey shows that 1 in 4 people with a muscle wasting and weakening condition feel financially insecure, with 70% of our community being worried about their financial situation. 1 in 4 people in our community don’t feel they have the opportunity to work or study if they’d like to.
Our community has been hit disproportionately hard by the cost-of-living crisis, and living with a muscle wasting and weakening condition comes with additional daily costs. This results in people having to face barriers to work, study, and living independently.
We’re calling for the process to add conditions to the NHS newborn screening programme to be sped up and for children and adults to be put on the right pathway in a timely manner.
Our community survey showed that over 2 in 3 people waited longer than a year for their diagnosis. For a majority (55%) of people, it took four or more meetings with healthcare professionals to get a diagnosis.
Early access to treatment, care and support is essential for people living with an often progressive muscle wasting and weakening condition. Newborn screening is vital for early diagnosis. For older children and adults, it’s essential they are put on the right pathway to receive a timely, accurate diagnosis, leading to earlier treatment and improved outcomes.
Being seen by the right specialists as soon as possible is key to ensuring better health outcomes for our community.
We’re calling on the Government to promote on-going professional development and upskilling of all health professionals around rare diseases and muscle wasting and weakening conditions.
A lack of understanding among non-neuromuscular specialist healthcare professionals about muscle wasting and weakening conditions can be frustrating and harmful to our community – leaving families at a loss, unsure where to turn when healthcare professionals don’t understand their condition. In emergencies, this can be life-threatening.
We’re calling on the Government to create a regulatory environment incentivising innovation, balanced with an equitable healthcare system, ensuring new treatments are accessible to those who need them.
The UK has a valued reputation for research into developing life-changing and life-extending therapies and treatments which were unthinkable decades ago. The next Parliament is critical in ensuring the UK retains this status, attracting and nurturing the best research talent.
The appraisal processed for new treatments needs to reflect that rare conditions should not be assessed in the same way as more common conditions. They should be recognised for their unique nature.
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