A mum whose disabled son needs his room heated to 21C to avoid hypothermia says the cost of living crisis means she can't afford to treat her kids this Christmas.
Single mum Anna Tesdale, 40, lives in Chesterfield, Derbyshire, with her three children, Mac, 15, George, 18, and 21-year-old Charlie.
Five years ago Charlie, who Anna described as being a “funny, incredible” man, was diagnosed with a “life limiting” degenerative brain condition called SPG11.
“He has gone from playing tennis all the time, being very sporty, to five years later, being a full-time wheelchair user,” Anna told the Mirror.
“Some days it’s almost like having a 21-year-old toddler. He can walk some steps, but he falls a lot so he needs constant watching. He needs help showering and to take his medication and we do all of his financial stuff because he has no concept of money."
Anna, who is qualified as a social worker but works as Charlie’s full-time carer, says his needs impact his siblings in ways that are increasing with the cost-of-living crisis.
Anna said: “Charlie can’t monitor his own temperature, so he gets cold easily and if he gets too cold, he could go hypothermic. That’s why we’re so careful and have an electric heater to heat his room properly, but we can’t always afford to heat the rest of the house.”
At first, Mac and George didn’t understand why the house was so cold, but Charlie’s room had heat so Anna had to honestly explain the situation to her children.
“I told them that because of his illness he needs to be warm,” she said. “
It’s hard because of course I want to have the heating on full-time for all my kids. Especially when it’s cold and dark outside, I just want them to be able to come home to a warm house.”
Anna said her financial situation meant the festive season would be different this year.
Charlie would be receiving a pair of socks for Christmas while her younger two would get a couple of small items they had been wanting.
The treats they would normally have would not be possible due to rising costs.
“I would love to get my youngest two exactly what they want for Christmas, but I’ve had to say to them, you can have a couple of little things but I can not justify spending much money on Christmas,” she said.
Last month, Anna really started to notice an increase in the cost of gas and electricity, just as the days got darker and colder.
She said: “We have a meter and it’s never bothered me because it’s always been manageable but now I put money on it, and it’s gone straight away.”
If the cost of living goes up any further, Anna does not know how she will cope.
She already skips meals to make food last and is buying cheaper frozen meals instead of the fresh produce the family would have had in the past.
A Department for Work and Pensions spokesperson told the Mirror that the Government was committed to protecting "the most vulnerable and we recognise disabled people face additional costs".
They added that six million disabled people were being supported with an extra £150 payment as part of a £37 billion support package of support that would see eight million low-income receive at least £1,200 in support this year.
The spokesperson said: “Our immediate support also includes our Energy Price Guarantee, saving around £900 for a typical household over winter and our Household Support Fund is helping people with essential costs.
“In addition, disability benefits will be increased in line with inflation for 2023-24 and we are making £900 of new Cost of Living payments to those on means-tested benefits next year, with a further £150 Disability Cost of Living payment to those on disability benefits.”
But Anna said she was currently “breaking even” with no spare cash.
She's worried that if prices of energy and other essentials continued to increase, she wouldn’t be able to pay the bills.
“They say there is going to be another rise in January or April, I am genuinely losing sleep over how we’re going to afford the extra,” she said.
“The cost of everything else is still going up.
“All I want is to provide the best for my kids, and I’m sat here wondering if we can afford to have the heating on for an extra 25 minutes a day.
“Charlie has got a wheelchair, he’s got a hoist.
"These are things that aren’t going to that he needs to keep him alive, and essentially I could use a manual hoist or a manual wheelchair, but why should he lose his independence because I can’t afford to charge his electric wheelchair?"
Charlie received PIP and Universal Credit while Anna claimed ESA, a carer’s allowance, but she said this wasn’t enough for the family to live without financial stress.
Anna continued to say that many people "didn't understand" how important benefits were to families like hers.
"Everyone is struggling, but a divide is being created and people on benefits are being vilified. It’s heart-breaking.”
Anna's story comes as national disability charity Sense has today published a new cost of living poll in which a fifth (22 per cent) of families in the UK that care for a disabled family member said they would not celebrate Christmas this year, due to financial struggles.
The poll found that more than half (51 per cent) of family carers in the UK were now in debt and three in five (61 per cent) were unable to afford to keep their home adequately warm.
Sense Chief Executive Richard Kramer said with families struggling to keep their homes adequately warm, it shouldn't be surprising that many were cancelling Christmas plans.
"The introduction of the Energy Price Guarantee prevented bills rising to disastrous levels, however, it is not designed to recognise that some disabled households will need to use more energy than the average household," Richard said.
Sense, which had this year for the first time provided families such as Anna's emergency financial support, wanted to see the establishment of a social tariff for energy, offering a discounted rate for disabled people who needed to use more power.
"Targeted support is something we urgently need, so that disabled households are able to heat their homes and enjoy the festive period," Richard said.
Anna said her children were understanding about Christmas being less of an occasion. George had asked for pick and mix sweets this year, she said, as he understood money was tight.
“We go through so much I just want to treat him and make things special for him, but I’ll do that in other ways,” Anna said.
Anna’s sister and mum live nearby, so they will gather as a family and celebrate Christmas together. This, Anna says, is what’s most important.
