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The Independent UK
The Independent UK
Holly Bancroft

Mother fears she won’t be able to keep disabled son’s oxygen machine running due to soaring costs

Family Fund

A mother has spoken about her fear that she will not be able to keep her son’s oxygen machine running this Christmas because of rising energy costs.

Jemma, from Derbyshire, cares for her 22-year-old autistic son George, who has breathing problems and requires an oxygen machine when asleep.

She has been buying reduced items in cheaper supermarkets and cutting back where she can to save money. Despite this the household bills are “horrendous”, she said.

George (pictured) has breathing problems and requires an oxygen machine when asleep (Family Fund)

“The biggest worry for me is the cost of electricity and running George’s oxygen machine. I genuinely have no idea if I’m going to be able to run that at Christmas,” Jemma said. “If the cost goes up even more then I probably won’t be able to.”

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“I’ve always been frugal with things but it’s getting to a point where I think I literally can’t cut back anymore. I do everything that I can but it comes to a point where there’s nothing more than you can do.”

George also has Downs Syndrome and lives at home with Jemma, his step-father Shaun and brother Charlie, 19.

Jemma added: “We don’t ever eat out or have takeaways. We’ve not been on holiday, or go on day trips. Also, because I’m a carer, I can’t even do more hours at work because I don’t have anyone else to look after George.”

She has been supported by the charity Family Fund, who gave George an outside swinging chair to enjoy and a computer to help with his education.

Cheryl Ward, Family Fund chief executive, said that Jemma’s experience was not unusual.

“The outlook for families raising a disabled, or seriously ill, child is now graver than ever. They are unsure how to cope with ever-rising caring costs with winter approaching, they are having to borrow more credit to pay for intense levels of debt and feeling more isolated than ever,” she said.

Jo is her son Archie’s full time carer (Family Fund)

Research by the charity has found that four in five families raising a disabled child or young person - 83 per cent - are in debt. Some 43 per cent of those families are seeing their debt levels rise, and over 40 per cent said they cannot afford to keep their homes warm.

Jo, who lives in Littlehampton, West Sussex, is looking after two sons, Archie, 6, and Max, 10, who are both autistic. She said her family “face the reality of going into debt as opposed to just cutting back”.

“We can’t live without the essentials that already cost us more than the average household. Since our family needs to do extra washing and have more baths, we’re seeing our utility bills go through the roof,” she added.

Archie suffered brain damage due to a neo-natal infection and has additional learning disabilities, immune deficiency, sensory processing disorder and bowel problems that have left him doubly incontinent.

Some 4,264 families with disabled children across the UK were surveyed for the charity’s new report, ‘The Cost of Caring’.

Cleo, 6, has a rare genetic disorder that causes problems with her mobility (Family Fund)

They found that over half of parents and carers - 54 per cent - reported skipping or cutting the size of their meals because there wasn’t enough money for food.

More than one in 10 families - 13 per cent - said they have had to cut back on items that are essential for their disabled children.

Jennifer, who lives in Oldham with her partner Jamie and three children, said she has had to cut back on healthy meals because they were too expensive.

Her daughter Cleo, 6, has a rare genetic disorder called Weidemann-Steiner syndrome, which causes hypermobility and hypotonia.

Family Fund gave the family a hot tub to help ease Cleo’s mobility issues but Jennifer can no longer afford to turn it on.

“Our gas and electric bill has already gone up. We’ve not be able to put the hot tub on as much, which has had a knock on effect with Cleo as it was such great source of pain relief for her hypermobility. Cleo cries with pain every night and we’ve not been able to use it,” Jennifer said.

One father, Ali*, who lives in Glasgow has had to take his family to the library in the evenings to keep warm as they cannot afford heating at home.

He has a daughter, Farah, 11, who has cerebal palsy, who wears a splint on her right foot to keep her stable.

Cheryl Ward from the Family Fund said people are unsure how to cope with ‘ever-rising caring costs with winter approaching’ (Family Fund)

“The weather is mild at the moment so we don’t need to put the heating on, but when winter comes and it’s cold I’m worried about what we’ll have to do. We’ve spent evenings in the library or at my parent’s house so that we don’t have to use energy. It’s horrible to think like this but we’re forced to do it,” he said.

Family Fund has helped pay for the family to take trips to London and to the theatre because they can no longer afford days out.

“The rising cost of living has meant we had to stop our weekend swimming and football classes [which] are far away and the fuel prices mean we can’t afford to travel much by car,” Ali added.

The charity’s chief executive, Cheryl Ward, said: “We are urging government to ensure that family benefits are increased in line with inflation, rather than reducing at a time when the escalating costs of caring are already jeopardising families’ lives.”

A Department for Work and Pensions spokesperson said: “We recognise the valuable role of unpaid carers and remain committed to helping them financially, along with their health, wellbeing and employment chances.

“Universal Credit includes a carer’s element worth more than £160 a month and since 2010 we have increased Carer’s Allowance, putting an additional £700 a year in cares’ pockets.

“The Secretary of State commences her statutory annual review of benefits and State Pensions from late October using the most recent prices and earnings indices available.”

*Names have been changed

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