Living in the dark, muesli for dinner and giving up showers: The vulnerable people making heartbreaking choices

Ed Slater spends most days sitting in the dark without the heating on. It has terrible effects on his multiple sclerosis from him, but he’s so fearful of his upcoming energy bill, he’d rather take the hit on his health from him.

The dad-of-three was diagnosed with the debilitating condition in 2008 and relies on the use of a wheelchair. He has always lived his life frugally, but says that since the cost of living has soared his life has become extremely difficult. Ed’s story is just a snapshot of what many vulnerable and disabled people across the region are currently enduring.

Like Molly Powner, the 92-year-old grandma who is fearful she won’t be able to pay for her gas and electricity bill as it’s set to increase to £4,800 a year – something she can scarcely afford with her £186 a week pension. She is already mindful of spending too much on heating her small town house in Hollinwood, Oldham and often spends much of the day in bed, or wearing several layers in an attempt to keep warm.

READMORE: All the everyday products going up in price as cost of living crisis hits

Helaina Stone, who has a rare genetic condition, was forced to give up her job at Manchester Royal Infirmary during the coronavirus pandemic as she was forced to isolate. She is still unable to work which has caused an extra strain on the family’s finances. And now, the eye-watering cost of filling up their mobility car is becoming too much to bear.

For those living with disabilities like Ed and Helaina, the cost of care is having to be weighed up against the cost of living. Ed currently receives just over £600 a month in Personal Independence Payment (PIP) and £397 every two weeks in employment support. But he says 90 per cent of both allowances are being used on rent, food and bills.

Helaina Stone with her mother Cath at their home in Failsworth

“I get PIP which is supposed to be used for mobility and care but the majority of what I should use for care I don’t because the money is going on food and bills,” he said. “I don’t have any savings or buy anything expensive. It’s something I’ve always struggled to pay for but now I am so fearful of when my energy bill comes.

“I live most of the time without lights or heating on. It has really bad effects on my multiple sclerosis and being cold exacerbates the pain really badly. I do put the heating on from time to time but I am just so fearful of when that bill lands. I have stopped buying fresh food because I can’t afford it. Sometimes for dinner I’ll just have a bowl of muesli. I have stopped showering every day as well. All the stresses are going to make my illness worse. “

Helaina Stone, 27, suffers from Costello Syndrome, a rare genetic condition which can affect the heart, muscles, bones, brain and spinal cord. Her parents de ella have to drive her to regular hospital appointments with her consultant, which can often be several miles away from their home de ella in north Manchester.

Speaking to the MEN, her mum Cath said: “Of course diesel and petrol have doubled and we have to have a mobility car for transporting Helaina. We live in north Manchester and her hospital appointments are either in Salford or Manchester. We should get a better fuel allowance for a disabled person but we don’t get anything.

Helaina was able to work part-time at Manchester Royal Infirmary with the help of her council-funded PA. But since the coronavirus pandemic hit in 2020, she has not been able to return to her job from her. Meanwhile, Cath’s husband is also classed as vulnerable and also attends regular appointments.

“This all adds to the caring. We have to spend a lot more money because Helaina isn’t able to go to work. We are at home a lot because there’s not a lot of places we can go. We have the heating on from morning until night, so we are very concerned about the rise in energy prices,” Cath said.

“We are very concerned about the rise in energy prices”

“The cost of food goes up every time you go shopping. Now we often go to Lidl or Aldi because things are half the price there. I think a lot of people will be switching to these because they are so much cheaper than the main supermarkets Everything seems to cost so much money at the moment.”

Cath is calling on the UK government to do more for families with disabled relatives during the cost of living crisis, including introducing a fuel allowance. “There are different ways they could help. It’s just horrible times ahead. Everything in life costs more now,” she said.

“It can make you feel very depressed. It’s affected Helaina’s mental health. We can’t even book a holiday because they are a bit too frightened of going and they are so expensive. There are queues at the airport and we don’t want to catch covid. So life is really hard at the moment. Some days you get so fed up.”

Despite doing all she can to keep her energy bills down, Molly Powner says she ‘doesn’t know what she’ll do’ if her astronomical new gas and electricity bill estimate is accurate. She is now facing a huge rise in cost to keep her home running – something she fears she won’t be able to manage.

Molly Powner, 92, at her home in Oldham

She had been paying £781.29 a year for electricity and £503.68 in gas in 2021, but this week the pensioner received a new bill from her energy company E.ON, informing her that her estimated charges for 2022 would be £3,371 a year for electricity and £852.19 a year for gas.

“They put my bill up last year to £110 a month and now they are telling me I have to pay £400 a month. I am concerned. 12 months at £400 is a lot more. That is about £4,800 a year and my pension is only £186 a week,” she said.

“I am in a two-bedroom townhouse and I only have one radiator in the living room, one in the hall and one in each bedroom. When you’re in all day it’s hard. I have extra jumpers on but obviously when you’ re my age you’re not able to move about as much.

“I am very concerned about it. I think it must be wrong. My family think there has been a mix up. If it’s not a mix up I don’t know what I’ll do. What can you do? I live on my own, and I don’t use the oven, just the microwave occasionally. Sometimes I try and get up later when it’s really cold because it’s warmer in bed.”

“I am very concerned about it”

A Government spokesperson said: “We know that living with a long-term illness or disability can impact on living costs and financial support is available to those with disabilities, or those who care for them.

“We urge people to check whether they are receiving all of the benefits to which they are entitled, and to be aware of the wider support this opens up, including help with transport, broadband or prescription costs.

“In addition, the Government is taking decisive action to help more than 27 million households with rising energy costs, with a £200 reduction on bills this autumn and a £150 non-repayable reduction in Council Tax bills. The energy price cap will also continue to insulate millions of customers from volatile global gas prices and our £1 billion household support fund is helping the most vulnerable with essential costs.”

E.ON have been contacted for comment.

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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