We’re calling on the UK Government to tackle the challenges faced by people with muscle wasting and weakening conditions in its upcoming 10 Year Health Plan

8 April 2025

The UK Government is creating a 10 Year Health Plan to shape the future of the NHS in England. We have already submitted written evidence to highlight the needs of the muscle wasting and weakening community. But they want to hear from everyone, including you, to inform its development.

About the 10 Year Health Plan

When they became the new Government Labour set up an independent investigation into the state of the NHS headed up by Lord Darzi. His report found serious issues and concluded that “the NHS is in critical condition”. This served as the Government’s understanding of the problems in the NHS.

In response to the report findings, the Government wants to create a new 10 Year Health Plan for England “to fix the NHS”. This is part of the Labour Government’s long-term mission to build an NHS fit for the future.

The Government has now started a national conversation (Change NHS) to help shape the 10 Year Health Plan.

It will focus on three themes:

Moving care from hospitals to communities
Making better use of technology
Focusing on preventing sickness and not just treating it

Towards the end of 2024, the Government asked for feedback from organisations. As the leading charity for over 60 muscle wasting and weakening conditions we responded to ensure our community’s voices are heard.

What we think should be in the new 10 Year Health Plan

Our response focused on the national conversation theme three, sickness to prevention, and one, moving care from hospitals to communities.

There are two big things that would allow for our community to spot and tackle illnesses earlier (theme three of the upcoming plan).

First, we need to make sure more of the country is able to deliver the highest quality care.

We currently carry a three yearly Centres of Excellence (CoE) audit to recognise the high levels of clinical and research achievement services provide. In 2023, 27 muscle centres participated of which 16 received the highest achievement status. Our findings also show inequities in accessing specialist centres, pressures in community services and areas for improvement in wide-ranging areas of care.
We work with healthcare services to help share the findings of the CoE audit and share best practice. But we also urge commissioners and health providers to use a newly developed ‘optimal clinical pathway for neuromuscular conditions’ to help to address gaps in service provision. This has been developed by leading experts to show what good care looks like.

Second, we need to increase the reach of newborn screening.

Early diagnosis and treatment are critical in minimising symptom progression and conditions getting worse. A way to help ensure this is newborn screening. But the UK National Screening Committee’s (UK NSC) current approach is making progress difficult in improving health outcomes for those with rare diseases, for example around the ongoing evaluation of screening for Spinal Muscular Atrophy (SMA). As part of the SMA Newborn Screening Alliance, we are calling on the UK NSC to speed up the process so that more families can benefit from quicker access to treatments.

Awareness is a key challenge in moving care from hospitals to communities (theme one of the upcoming 10 Year Health Plan). The best care for people with muscle wasting and weakening conditions involves a range of healthcare professionals in and outside of neuromuscular specialist centres. But many non-specialist health professionals lack awareness of muscle wasting and weakening conditions. For example, we know that over half of our community (55%) had four or more meetings to get a diagnosis and 47% were misdiagnosed at some point.

We’re calling on the UK Government to work with patient and professional organisations like us to empower more health professionals to be confident, informed and better equipped to deliver the care and support our community deserves.

The Government’s new 10 Year Health Plan should recognise the challenges neuromuscular services face. It should minimise the postcode lottery in healthcare service provision facing our community, including by promoting good practice from around the country. We’ll continue to follow the Government’s work on this to keep you updated.

The national conversation is ongoing and there is still time for you to participate. The deadline to submit your opinions using the online platform is 5 pm Monday 14 April. If you haven’t already, sharing your experience is a great way to make sure that muscle wasting and weakening conditions are prioritised in the new 10 Year Health Plan.