Like many disabled people, I lose sleep worrying about bills

I am 43 years old and have muscular dystrophy – a muscle-wasting condition first diagnosed when I was 24. I live in Milton Keynes with my husband, who provides substantial care support when my part-time personal assistants (PAs) are not there.

It can be difficult for many disabled people to find the money to pay the bills. This year we’re finding it has become much, much tougher. It’s definitely making me lose sleep at night.

Rising energy bills

Electricity bills are particularly high. My powered wheelchair helps me move around, and that’s one of several items that need regular charging. Each day, several crucial items need to be plugged in when I’m using them: these include a cough assist machine to clear my lungs, a hoist to help with transfers and an electric bed. My part-time job with Muscular Dystrophy UK means my computer is on regularly, along with items like my headset so that I can dictate my writing.

By far the biggest expenditure is heating. My muscles don’t work the same way as other people’s muscles, so one effect of my condition is I get really cold very easily. It’s really difficult for me to stay warm. During the day, I need the heating on all the time (set at 20°C), and I have small electric heat mats on my lap. At night I need my electric blanket.

So all this means my energy bills have doubled in the past couple of months. My usage will rise further as the weather turns colder.

Everything is going up: food, fuel and transport

Everything is going up. I’m diabetic, and my food can cost quite a bit more. We try to save where we can and pick up bargains. Still, my weekly food bills have shot up. It’s a very big expense.

Fuel bills and transport costs are a huge concern. When I got my wheelchair-accessible vehicle (WAV), this was life-changing: it helped me get around and boosted my independence. If I needed to go to hospital appointments, I didn’t have to wait hours for hospital transport; if I wanted to go to work meetings or see family and friends, I could. Now, with hospital appointments coming up and prices so high, I’m saying no to work meetings and social events in a bid to save fuel.

Benefits must rise with inflation

I’m really hoping the government keeps a crucial annual commitment to raise benefits in line with September’s inflation rate (10.1% on the Consumer Price Index, or CPI, for September 2022). I’ll be keenly watching this month’s Autumn Statement from the Chancellor to see if they keep their promise to bring in this exact rise on 1 April 2023. If they don’t, it will be a huge blow for people on lower incomes -- including many disabled people and those supporting them. People will face a big real-term cut in their budget, and some will struggle to survive.

I claim the disability benefit Personal Independence Payment (PIP), and some disabled people over 65 might claim Attendance Allowance. While legal protections mean these must rise annually with inflation, this is not the case for other benefits. I also receive Employment and Support Allowance (ESA). Like many other people relying on benefits, we simply don’t know if this will rise with inflation.

My husband provides a lot of my care. During the week, he supports me in the mornings and evenings, while PAs come in for eight hours in between. At weekends he supports me 24/7. Like many family carers, he gets Carer’s Allowance, which is currently just £69 a week and won’t stretch very far at all. We need these benefits to raise significantly to make ends meet.

Urgent need for clear action

In his opening weeks as Prime Minister, Rishi Sunak repeatedly claimed government policy will be “compassionate” and “fair”, while Chancellor Jeremy Hunt said they will prioritise those most in need.

We want to see more than just words. There is an urgent need for clear action to help people facing a fight for survival. Disabled people and those assisting them must receive more financial support, and benefits must rise in line with inflation.

Kerry is a respected campaigner, blogger and writer. She featured again this year in an annual, UK-wide list of influential disabled people – the Shaw Trust Disability Power 100.

Helpful resources: information on benefits

Government info: You can visit the cost of living support page and then click on the section ‘Support if you’re disabled’. This contains links to apply or find out more about key benefits like Personal Independence Payment (PIP) and Employment Support Allowance (ESA). You can also visit the disability and sickness benefits page. 

Support from other organisations: Citizens Advice has a page for disabled people and carers and a page to check what benefits to claim if you’re disabled. See more information on PIP at the bottom of our blog on PIP.