“I put extra blankets on because we can’t afford the heating – but it means I can’t move”

The cost-of-living crisis continues to disproportionately affect people living with muscle wasting and weakening conditions.

On Thursday 14 November 2024 we published our cost-of-living report. As part of this report we conducted first-person interviews. This is Daniel’s Story.

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Living with Duchenne muscular dystrophy at 49 years old, there’s a lot of things I used to do that I no longer can. With my hobbies and comfort limited even more due to the financial difficulties of living with a muscle wasting condition.

Our electricity and heating bills are a constant struggle

I have a lot of medical equipment which means our energy bills are very high and have increased a lot in recent years. Using a ventilator and regularly charging my electric wheelchair uses additional electricity. Because I’m unable to move independently, I also have to keep my flat quite warm, but balance this with opening windows to ventilate it to reduce the risk of me catching germs.

We’ve lived in our current flat for 30 years and we’re fortunate to have all our adaptions funded, but they are far from ideal. The turning points to get into the different rooms are very narrow and the rooms are too small for my wheelchair, so I’m confined to my room most of the time. We’ve been on the waiting list for a new property for the last seven years. We’ve recently been accepted for a new flat, but the Disabled Facilities Grants (DFG) process is very stressful – whether my basic human needs will be met are in the hands of a single person.

I limit how much I leave the house to save money

I volunteer with a local mental health charity, helping with occasional projects and technical support. When I can, I enjoy going out in nature and taking photographs, as well as attending comic conventions. I’ve started reducing this though, to ensure we have enough money for the essentials. There’s always the worry in the back of my mind about unexpected additional costs that may have to be dealt with.

My wheelchair is now 13 years old and has started needing a lot more repairs. It recently needed new tires and a battery, which on its own was £500. Without my wheelchair I’m confined to my bed. I had to borrow money from my mum just to be able to move around my own house. Eventually, Continuing Health Care (CHC) agreed to cover the cost and I was able to pay back my mum, but that took four months of fighting and a lot of stress.

Although I have 24-hour care funded by CHC and receive disability benefits, there are several costs that the government don’t provide enough support for. Paying for transport and tickets for my carers is something I always have to think about. I avoid going to venues that don’t offer a free carers ticket. Supposedly, this is what the mobility part of Personal Independence Payment (PIP) is for, but having a Motability car means you don’t receive any of that income. The fluctuating price of petrol also has to be factored into any outings I want to take. Currently I have to minimise socialising due to other expenses.