People living with a muscle-wasting condition already have a large amount of additional costs to ensure they live well for as long as possible, from more heating to prevent the cold from stiffening their muscles, to the housing adaptations needed to live as independently as possible. Additionally, the financial burden of attending a vast array of specialist appointments, charging specialist equipment and electrical wheelchairs, and paying for private therapeutic treatments that are unavailable through the NHS can’t be underestimated.
Families have told us about the increase they are seeing on their utility bills, groceries and petrol to travel to appointments. With the costs only going to continue to rise, they are now struggling more than ever, and it is imperative that they getting the support they need.
In October 2022, we published The impact of rising costs on people living with a muscle-wasting condition report setting out key recommendations to improve the support available to ensure alleviate the financial burden people with a muscle-wasting condition are facing. These include:
-
Implement a hospital travel card scheme to provide subsidised, accessible travel to people living with a long-term condition, including people living with a muscle-wasting condition.
-
To end VAT on energy bills whilst prices are increasing for people living with a long-term condition, including people with a muscle-wasting condition, to make these costs more manageable.
-
Increase benefits in line with current levels of inflation to better support the increasing cost-of-living support.
-
Lift the cap on the Disability Facilities Grant cap and introduce flexibilities to better capture the degenerative nature of muscle-wasting conditions when assessing applicants.
MDUK will be pushing for these changes to not only support people living with a muscle-wasting condition and their families during this cost-of-living crisis, but to also better support them in the long-term to enable this community to better cope with the financial demands associated with their condition.
We took our report to Parliament and were pleased that the next day, MPs were talking about it in the House of Commons.
If you would like to share your experience of the increasing costs of living or discuss any barriers to accessing support and benefits, please do let us know by getting in touch by emailing campaigns@musculardystrophyuk.org