A new report by Muscular Dystrophy UK explores the impact of the cost-of-living crisis and the effect it’s having on people living with a muscle wasting and weakening condition.
Over half of the people who contributed to the report (53%) said they feel financially insecure. 17% of those reported feeling very insecure. And things have got worse. In research carried out by the charity in 2022, 17% of people said they weren’t worried about their financial situation. In 2024 just 4% weren’t worried.
The leading charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting and weakening conditions, has published the ‘Financial Insecurity’ report revealing key insights, including exploring the employment status of respondents, the type of financial support they receive and the areas of spending that matter most to them.
Financial insecurity has a widespread negative impact on lives. Of the survey respondents, 48% said their physical health has worsened. This rises to 66% when asked about mental health. Over a third of respondents, 35%, said it has negatively impacted their ability to work, with 16% saying it has made it much worse.
One respondent said:
“Having muscular dystrophy has affected my life considerably. I have had to increase my antidepressants to help my mental health. And I have had to give up a job that I loved due to my physical disability and chronic pain that I suffer with it.”
Disabled people face a range of increased costs compared to other households. For people living with a muscle wasting and weakening condition, these extra costs can include petrol to travel to the large number of specialist and community appointments they need to attend; additional energy needed to power aids and equipment, like cough assist machines and wheelchairs; and housing adaptations to maintain independence.
Four in five people, 82%, consider paying for utility bills their biggest monthly essential spending area. The next biggest, at 68%, is day-to-day travel.
One person said:
“My daily costs living with a severe physical disability are astronomically high and bills just keep on getting bigger… It is a nightmare. Costs on cost never ever stop.”
Another said:
“Everything has been stripped away from us, you are just surviving not quite drowning but treading water. You are constantly worrying about the cost of everything you spend, it is always at the forefront of your mind.”
Muscle wasting and weakening conditions are a group of conditions that gradually cause muscles to weaken and waste. The conditions worsen over time and there is currently no cure for them.
Many people are worried about their working future with one person said:
“As the condition progresses, I know I won’t be able to work much longer and then I will either require carers or my wife will need to work less to care for me. Very worrying in the current climate with two children depending on us.”
Rob Burley, Director of Care, Campaign and Support at Muscular Dystrophy UK, said:
“These new findings show that not only do many people living with a muscle wasting and weakening condition feel financially insecure, but over half feel they are one change in circumstance or potentially one major expense away from feeling so. This precarious position only adds to the stress and fatigue felt by our community.
“People living with a muscle wasting and weakening condition are telling us that things have got worse in recent years, are bad now and are set to deteriorate further. The health, well-being, and quality of life of people is suffering. There is an urgent need to find solutions to the cost-of-living crisis so that people living with muscle wasting and weakening conditions can afford the essentials. More importantly, given the wide-ranging effects of the cost-of-living crisis, such as on quality of life, further support should ensure people are thriving, and not just surviving.
“We want to ensure immediate support to help our community cope, as well as a commitment to the longer-term reform needed to better support people. We look forward to working with the UK Government and other stakeholders to address the issues this report raises.”
Mathy Selvakumaran, 34, from Worksop, Nottinghamshire, lives with congenital myopathy, she lives at home with her parents and is currently receiving Personal Independence Payment (PIP).
She said:
“I help to contribute to bills and household expenses, but it’s always in the back of my mind that if anything happens to my parents, I know I won’t be able to support myself.”
“You’re always paranoid that if you say the wrong thing they could take benefits away from you. They say they do reassessments because your needs could change, but they’re never going to change to zero.”
Between April and September this year, access to PIP accounted for the highest number of cases dealt with by Muscular Dystrophy UK’s advocacy service.
The charity is calling for the UK Government to ensure people don’t feel at risk of losing their benefits; and increase the available income of people with muscle wasting and weakening conditions (for example by raising the level of financial and disability-related benefit allowances, or additional one-off payments) and implement wider changes to the social security system to better meet people’s needs and limit the number of benefits reviews.
Employers also have a role too to improving understanding of the needs of disabled people and implementing flexible working practices in particular the ability to work from home on some days.
Read the full report here: musculardystrophyuk.org/Financial-insecurity.
For more information about Muscular Dystrophy UK visit: musculardystrophyuk.org or call our free helpline on 0800 652 6352 (open Mon – Thu 10am – 2pm).
