Cost of living crisis: 'I had so many hopes - but now each day I regret not dying of cancer'

It was October last year when Scope, the disability equality charity, warned the government is failing disabled people during the cost of living crisis.

Scope warned the government’s one-off payments for people on disability benefits didn’t “touch the sides” and were putting people in a “life-or-death situation”.

Petitions were also launched calling for greater support, and it was against this backdrop that the House of Commons petitions committee conducted a survey, completed by almost 11,000 people about their experiences - as disabled people or relatives, friends and carers of disabled people - of financial support amid increases in bills.

On Monday, the survey was presented at a Westminster Hall debate by Labour MP Marsha De Cordova. The tone of many of the responses was stark.

Here, from that survey, are some of the testimonies which expose the raw everyday realities of many disabled people during the cost of living crisis.

'I regret not dying of cancer'

“I'm freezing, I'm hungry and I don't receive the amount of care I need to live a dignified, equitable life. A shower is a treat for me now, that’s the stage I have got to. I have to spend about an hour in the shower as it takes me a long time to wash (even with support) so I have had to limit the amount of showers I have. I used to shower every other day, now it's every 10 days on average. I'm smelly, I'm so cold, my pain levels have increased due to the cold so my mobility has reduced and I am stuck indoors, in bed, to try to stay warm.”

In perhaps the most shocking quote out of the entire survey, that person went on to say:

“I survived childhood cancer to become a disabled adult. I had so many hopes for my life but now each day I regret not dying of cancer. My life is not dignified.”

'Profound loneliness'

Amid spiralling bills, 60% of respondents said they had to limit the use of specialist equipment. Here is the testimony one such person:

“I have had to reduce how much I use my electric wheelchair - it is the only way I can access my home and the outside world so I rarely get to go out now. This has caused profound loneliness and very poor mental health. I also have an electric bed and I have to ration using it, which has had a bad effect on my physical health.”

Some 97% of respondents were concerned about the impact of the cost of living on physical health (72% were “extremely concerned”) while 94% were concerned about the impact on mental health (69% were “extremely concerned”).

'I feel like a failed mother'

“My son has cold urticaria. He is allergic to the cold. He has EpiPens [which contain adrenaline for use in emergencies when people are suffering an allergic reaction]. I have had to use them this winter as I can’t afford the heating on all the time, or I can’t afford special clothing for him. I feel like a failed mother.”

Some 93% of respondents said they limited the use of energy such as heating.

'I used to get £150 warm home discount... now I'm not eligible'

“I used to get the £150 warm home discount for the last four years, but this year was told I was not eligible due to living in a new build even though it’s a disabled flat with electric doors, windows, emergency buttons etc which all cost more and using more electricity than a normal flat - and now I’m not eligible!”

This came as 77% of respondents said they thought the government’s financial support for disabled people in receipt of benefits was inadequate.

It left De Cordova asking of the government: “A person who regrets not dying of cancer, and a mother who feels like she is a failure. I ask the minister how that is acceptable in the UK in 2023? Nearly half of those living in poverty in the UK are disabled or live with somebody who is disabled.”

Read more: Cost of living: Energy bills still 80% higher than before the crisis, experts warn

Tom Pursglove, the minister for disabled people, health and work, insisted: "It is important to get it on the record again: we as ministers are not complacent. We are adamant that vulnerable energy users must be able to afford their bills, and we recognise that there are inevitably higher costs associated with many of those households’ usage.

"That is why the chancellor and the prime minister acted decisively to introduce the cost of living payments and provide structured support worth over £94bn in 2022-23 and 2023-24. That is an average of over £3,300 per UK household."