We’re calling for the next government to review disability benefits, fix the issues in Personal Independent Payments, and increase access to work.
We’re calling for people living with a muscle wasting and weakening condition to be able to feel more financially secure

Findings from our community survey, 2023, and our cost-of-living survey, 2022, reveal our community have been disproportionately hit by the cost-of-living crisis. It has always been an ongoing struggle for those living with a condition to financially cover their costs in comparison to that of the general population, with the Covid pandemic further widening this gap. 1 in 4 (24%) of our survey respondents living with a muscle wasting and weakening condition said they feel financially insecure, with 70% of our community stating they are worried about their financial situation.
“Having a muscle wasting condition means there are lots of additional costs.
“For example, I’ve got to charge my two power wheelchairs and an electric hoist. I can’t use a manual wheelchair because the muscle weakness in my arms means I can’t get out of it. I’ve got a continuous positive airway pressure (CPAP) machine, which helps me breathe while I sleep. I need it for living.” Sulaiman, living with congenital muscular dystrophy.
Two of the main areas causing people living with a condition to face financial insecurity, are a lack of employment opportunities and a complicated benefits system.
A complicated and unsuitable benefits system
Disability benefit systems are complicated, particularly when they don’t take into account the problems people living with muscle wasting and weakening conditions face. We’ve heard countless stories from our community, and it’s clear these systems are riddled with issues. From undertaking lengthy applications, poor assessment stages, mandatory reconsiderations or reappeals, and the time taken to complete all these steps, people are currently facing a demoralising struggle, every step of the way.
The initial application documents for all benefits can be daunting due to their length, but also too demanding for people to relive their worst days. Face-to-face assessments are no better. Most people will have to face an assessor with limited medical understanding, participating in tests inappropriate for their condition. This lack of knowledge about muscle wasting and weakening conditions is particularly worrying, considering the frequency with which assessors use informal observations – judgements based on what they think they see, rather than what they’re told – in their decision making, which are not accurate representations of how a person’s condition may affect them.
“I could probably walk 20 metres with my wife beside me; however, I would be exhausted for three days afterwards, but those things are not taken into account when we talk about qualification for social security.” Martin, living with limb girdle muscular dystrophy
“The lead up to the care review in terms of the impact on my mental wellbeing with the huge stress and anxiety it brings, is the issue.
“There’s not a scenario with a degenerative condition where you’ll turn around and say my care needs are less than they were last year, it’s never going to happen.
“There is always the fear of them turning around and saying we don’t think you need this anymore so we’re going to reduce your care package.” Ben, living with limb girdle muscular dystrophy
“If a politician asked me, what would you want in a manifesto to protect disabled people’s mental health it would be non-reapplication of a social security, like PIP and DLA, when someone is living with a degenerative condition that is not going to get better. It doesn’t benefit the claimant and it doesn’t benefit the party that’s asking that person to do that, albeit from DWP. We are still tested every 12 months/36 months to see whether we qualify for the higher rate mobility component when there’s not going to be a cure or a medicine to make us better.” Martin, living with limb girdle muscular dystrophy
Barriers to employment
1 in 4 (24%) of our survey respondents living with a muscle wasting and weakening condition said they feel they do not have the opportunity to work or study even if they want to.
Jobseekers with muscle wasting and weakening conditions face barriers at every stage of employment, and not having access to employment opportunities makes being financially secure even less attainable. The disability employment gap –the difference in the employment rate of disabled people and people who are not disabled − remains just under 30%.
People living with muscle wasting and weakening conditions face issues from the outset when it comes to seeking employment, and face a range of challenges in applying for and remaining in work – including from the interview process itself where we’ve been told of some employers directing their questions to a person’s carer instead of them. Too many from within our community have had to leave jobs due to healthcare commitments or unsuitable working conditions, with too many employers still unwilling to offer flexible working on such occasions.
For any of our community that tries to stay in their desired role, the working environment can be exclusionary, for example, not being in a wheelchair friendly location, which can be easily fixed by small adjustments.
“All I know is that by having a muscle weakness condition each day is a challenge, let alone adding to the mix of being a single parent and looking for a job that would be suitable and adaptable to my needs.” Emily, living with a muscle weakening condition.
For more support and information
- We’re calling on the next government to deliver five key priorities for our community.
- Find out more about our campaign work and get in touch with us at campaigns@musculardystrophyuk.org to get involved.
- Get support from our helpline.
- 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.
- Find out more about available cost-of-living support.
- Link to our community survey