'I've given up eating hot meals to pay for equipment to keep my son alive'

Samantha Tolmie has given up eating hot meals in order to pay for the vital equipment keeping her son alive - and she is not alone. Across the UK parents are cutting corners wherever possible to make sure they can afford to look after their children.

"I forget that it's not normal for someone not to cook food or to sit without the lights on because it saves energy," Samantha says.

Her son Lewis, now 22, is dependent on a ventilator, as well as humidifiers, suction machines and oxygen concentrators, to keep him alive, after falling seriously ill as a toddler.

In order to keep all those machines powered, she says she was forced to make cuts after soaring energy prices left her facing bills of more than £400 a month, adding "I can't switch anything else off".

She says: "I've given up me to be here for Lewis, so I will do whatever I need to keep him alive."

Across Yorkshire, charities supporting disabled children and young people say they are seeing a worrying rise in parents and carers like Samantha skipping meals so that they can meet extra costs.

The Department for Energy Security and Net Zero says that the government is "determined to fight people's corner to tackle the cost-of-living crisis."

Lewis's machines have to be fully powered at all times and have pushed Samantha's energy bills from around £100 to at least £400 a month.

She says at one stage her energy company called to suggest she doubled her direct debit to £845 per month.

"I was terrified. That's more than my rent," she says.

As a result, Samantha, from Doncaster, has had to limit her energy use wherever possible.

She turns lights off and no longer cooks hot meals, only eating one meal of Marmite sandwiches and fruit every day.

Sometimes, she says, Lewis's nurses "feel sorry for me, so they'll bring me hot food".

With the next energy price cap, which will apply from 1 July, due to be announced by Ofgem later, Samantha is concerned that her bills could rise even further.

"I know everybody is struggling with these prices, but we can't cut back any more.

"I can't switch anything else off," she says

She has been able to access support from City of Doncaster Council, the government and charities, but struggles with the stigma around claiming benefits and is unable to work as Lewis requires 24-hour care.

"I feel shame that I have to claim benefits from the government, because I've worked hard all my life and now I can't.

"I just wish people could see how hard it is for families like mine, that we're not sat around taking payouts from taxpayers pockets, that we work really hard and we do have value."

She said the money she receives isn't enough to cover all of her expenses, with one payment for rent only covering two thirds of what she owes.

Disability charity Scope estimates disabled households need an extra £1,095 each month on average to cover costs.

While disability benefit Personal Independence Payment (PIP) supports 3.7 million people across the UK, the average PIP payment is £465 a month leaving a £630 shortfall.

York-based charity Family Fund provides grants for essential household items for families with disabled children and young people.

They say demand doubled to nearly 300,000 requests last year but they are no longer able to meet it without further funding.

In its Cost of Caring report, a survey of service users found that 44% of parents and carers said their benefits did not cover their essential costs.

More than half said they were skipping meals so that they can afford to pay household bills.

Lizzie Shelmerdine, Family Fund's head of research and evaluation, says the rising figures are "really, really worrying".

"Families are having to choose between things like heating their homes or the parents having dinner just so that they can afford to run their households," she says.

The charity estimates there are 745,300 families across the UK who are eligible for their grants.

Shelmerdine adds: "There's definitely more support needed to make sure that parents get the respite and the help they need."

In Wetherby, Martin House Children's Hospice provides palliative care and respite for children and young people who have serious illnesses.

"We know that Yorkshire has a large number of children in areas of deprivation who've got life shortening conditions," says Vicki Greensmith, director of clinical services.

"We certainly have families who come here who don't have any garden, don't have carpet in the bedroom, and live in poverty.

"So I think coming here is incredibly special because it's just a break from some of those struggles that families will have in their homes."

The hospice also supports families once a child or young person has died.

Recently, they supported a family who were unable to afford a headstone for their son.

Greensmith says: "They knew that they weren't going to be supported in funeral costs, and they were potentially going to lose their housing when their son had died.

"These are the types of decisions families are making and it's incredibly stark and increasingly common for us to hear those types of things."

Angie Fenn is head of information and advice at Contact, a charity which runs a helpline for parents and carers of disabled children up to the age of 25.

She says it's important parents and carers understand what benefits they can access, including how there are a lot of myths around children not being eligible.

"When parents come through to us and they talk to one of my team, we'll be looking to check that they're claiming all the benefits that they're entitled to," she says.

"We still hear from many parents who have been told that their child isn't disabled enough or that they need a diagnosis in order to claim disability living allowance.

"We'd also be advising them to keep in touch with their utility companies and not to ignore any concerns they have."

The Department for Energy Security and Net Zero said it continues to support families through expanded eligibility for the Warm Home Discount and further help with energy and living costs.

"The energy price cap fell by £117 a year at the start of April, with savings locked in until the end of June.

"We are also supporting households using heating oil and freezing rail fares and prescription charges.

"The government is determined to fight people's corner to tackle the cost-of-living crisis."