Carolynne Hunter’s daughter Freya, 12, has severe complex health problems and disabilities, is non-verbal and blind and requires full-time oxygen and at-home nursing care.
Ms Hunter said Freya has a “huge amount of equipment that supports her to stay alive”, including a machine monitoring her oxygen and heart rate, and described her bedroom and bathroom as an “intensive care micro ward at home”.
They also need to boil kettles for NHS staff who help with Freya’s care, wash extra clothes, run medicinal baths, and use an electric bed and a hoist.
We know people are worried. We understand how tough this crisis is.
If you need help, we are here.
📞 Contact our Disability Energy Support service to talk to our team about energy.https://t.co/qyKX8UHbh6
— Scope (@scope) August 26, 2022
Before the price cap rises, the 49-year-old from Tillicoultry, Scotland, was paying around £280 a month to run her home – an old house large enough for Freya’s medicinal needs but not very energy efficient.
She described the sum as already “quite unaffordable”, with the pair routinely spending winters in fuel poverty, unable to light a candle or burn wood due to oxygen canisters in the house.
Ms Hunter is currently paying around £400 a month and has been told her bill will rise to more than £700 from October.
She told PA: “Our families are going to suffer, there’s going to be a mass crisis for the NHS and social care and children will die if their families are not able to pay for it.”
Ms Hunter called on the Government to foot the bill of the unaffordable hikes “because it’s going to be cheaper than what the NHS and social care crisis is going to be”.
Chancellor Nadhim Zahawi said on Friday the Government is working “flat out” to develop more options to support households, acknowledging the latest rise will cause “stress and anxiety”.
Our families are going to suffer, there's going to be a mass crisis for the NHS and social care and children will die if their families are not able to pay for it
Another mother warned there will be a political “reckoning” over the price rises.
Lorna Fillingham, from Scunthorpe, north Lincolnshire, said the latest energy cap increase will have a “huge impact” and “lots of people in our situation … are really going to struggle”.
Her 12-year-old daughter, Emily-May, has a rare genetic condition which means she has physical disabilities and severe learning disabilities.
They use the washing machine “constantly” for bedding and clothes, use extra heating as Emily-May has problems regulating her temperature, and often batch cook, freeze and reheat separate meals for her as she has multiple allergies.
Ms Fillingham is calling for disability benefits to be increased in line with rising inflation, and said the one-off £150 cost-of-living payment heading to millions of disabled people from next month will “not touch the sides”.
The 50-year-old, a former nurse who stopped working in 2014 so she could care for her daughter, said: “I don’t know what we can cut back on if energy prices get so high that we can’t afford it anymore without going into potential debt.”
She added: “I cannot see how this is going to go unchallenged at the ballot box at some point, because if you cannot afford to eat, heat your home, and keep the most vulnerable people in society safe and without hardship, I can’t understand how people can turn a blind eye to that and vote the same way.”
It comes as consumer champion Martin Lewis said he is worrying “terribly” for people with disabilities, “who need lots of electrical equipment to keep their houses warm because of medical conditions”.
An open letter to the Conservative Party leadership candidates Rishi Sunak and Liz Truss, signed by 83 groups, is calling for the Government to provide energy assistance payments for families of seriously ill and disabled children unable to access medical grants from the NHS.
Andy Fletcher, chief executive of Together For Short Lives, one of the signatories, said this is needed now – before the Conservative leadership election concludes early next month.
James Taylor, director of strategy at Scope, another signatory, said the charity is hearing from parents of children who need life-saving equipment “who feel punished for needing to use extra energy”.
“They’ve already cut back everything they can,” he said.
“This is an emergency. Without urgent government intervention, many more families like these will be pushed into debt and destitution.”
The end-of-life care charity Marie Curie said terminally ill people could freeze to death without extra support.
Chief executive Matthew Reed said: “The need to stay warm to keep pain at bay and power specialist medical equipment means that energy bills for some terminally ill people will be thousands of pounds higher than the average household.
“Many won’t be able to afford this. With 30% of excess winter deaths attributable to cold, damp housing, this could cost lives.”