‘I’ve given up eating hot meals to pay energy bills to keep my son alive’
Samantha Tolmie has given up hot meals to pay for the vital equipment keeping her son alive, and she’s not alone. Across the UK, parents are going above and beyond wherever possible to make sure they have the money to look after their children.
“I forget that it is not normal for someone not to cook or sit without turning on the lights because it saves energy,” says Samantha.
His son Lewis, now 22, is dependent on a ventilator as well as humidifiers, suction machines and oxygen concentrators to survive after becoming seriously ill as a young child.
To keep all these machines running, he says he has had to cut back after rising energy prices left him with bills of over £400 a month. “I can’t turn anything else off,” he adds.
She says: “I gave up myself to be here for Lewis, so I’ll do whatever it takes to keep him alive.”
Charities supporting disabled children and young people across Yorkshire say they are seeing a worrying increase in parents and carers like Samantha skipping meals to cover the extra costs.
The Ministry of Energy Security and Net Zero says the government is “committed to fighting alongside the people to combat the cost of living crisis”.
Lewis’s machines need to be at full power at all times and Samantha’s energy bills have risen from around £100 a month to at least £400.
At one stage, he says, the energy company called and suggested he double his direct debit to £845 a month.
“I was horrified. This is more than my rent,” she says.
As a result, Samantha, from Doncaster, has had to limit her energy use wherever possible.
She turns off the lights and no longer cooks hot meals, eating only one Marmite sandwich and fruit each day.
Sometimes, she says, Lewis’ nurses “felt sorry for me, so they brought me a hot meal.”
Lewis’ tracheostomy bands need to be changed every day [Jenny Dunning/BBC]
The next energy price cap, effective July 1, is as follows: Announced by Ofgem earlier on Wednesday.
It was stated that prices could rise by 13 per cent, meaning a household using normal amounts of gas and electricity would pay an extra £221 each year.
“I know everyone is struggling with these prices, but we can’t cut any more,” says Samantha.
“I can’t turn anything else off.”
He has been able to access support from Doncaster Council, the government and charities, but he struggles with the stigma around seeking help and cannot work because Lewis requires 24-hour care.
“I feel ashamed that I have to ask for help from the government because I have worked so hard all my life and now I can’t.
“I wish people could see how hard this is for families like mine, that we are not paid out of taxpayers’ pockets, that we work really hard and have value.”
He said the money he received was not enough to cover all his expenses, and a single rent payment covered only two-thirds of his debt.
And he’s not alone.
Disability charity Scope predicts disabled households need extra help £1,095 every month on average to cover costs.
Disability benefit supports Personal Independence Payment (PIP) 3.7 million people across the UKThe average PIP payment is £465 a month, leaving a shortfall of £630.
York-based charity Family Fund provides grants for essential household items to families with disabled children and young people.
They say demand has doubled to nearly 300,000 claims in the past year, but they can no longer meet that figure without more funding.
in it Maintenance Cost reportA survey of service users found that 44% of parents and carers said benefits did not cover their basic costs.
More than half said they skipped meals to pay household bills.
Lizzie Shelmerdine, head of research and evaluation at the Family Fund, says the rising figures are “really worrying”.
“Families are forced to choose between things like heating their home or making dinner for their parents just to make ends meet,” he says.
The charity estimates there are 745,300 families across the UK eligible for the grants.
“More support is definitely needed to ensure parents get the time and help they need,” Shelmerdine adds.
Lizzie Shelmerdine says families face significant costs [Kit Taylor/BBC]
Martin House Children’s Hospice in Wetherby provides palliative care and respite for children and young people with serious illnesses.
“We know there are many children in deprived areas of Yorkshire whose living conditions are being cut short,” says clinical services manager Vicki Greensmith.
“We always have families who come here who don’t have a garden, who don’t have a carpet in their bedroom, and who live in poverty.
“That’s why I think it’s incredibly special to come here because it’s just a break from some of the challenges that families would be going through at home.”
Hospice also supports families when a child or young person dies.
Recently, they supported a family who could not afford to buy a headstone for their son.
“They knew they wouldn’t be covered for funeral expenses and would potentially lose their home when their son died,” says Greensmith.
“These are the kinds of decisions families make, and it’s incredibly harsh and increasingly common for us to hear these things.”
Angine Fenn says it’s important for parents and carers to understand the benefits [Kit Taylor/BBC]
Angie Fenn is head of information and advice at Contact, a charity that runs a helpline for parents and carers of disabled children up to the age of 25.
He says it’s important for parents and carers to understand what benefits they can access, including many myths that children are not entitled to.
“When parents come to us and speak to someone on my team, we will try to check that they are getting all the help they are entitled to,” he says.
“We still hear from many parents who are told their child is not disabled enough or that they need a diagnosis to claim disability living allowance.
“We also advise them to stay in touch with their utility companies and not ignore their concerns.”
The Department for Energy Security and Net Zero said it continues to support families through expanded eligibility for the Warm Home Rebate and more help with energy and living costs.
“The energy price cap fell by £117 per year at the beginning of April and savings continued until the end of June.
“We are also supporting households using heating oil, freezing rail fares and prescription charges.
“The government is determined to engage the public to combat the cost of living crisis.”
If you are affected by any of the issues mentioned in this article please visit the BBC Action Line.
Listen to the highlights West Yorkshire, south yorkshire And north yorkshire Open BBC Voicesfollow the latest developments New episode of Look North.
