Mum fears she won’t be able to afford £17,000 it could cost to keep disabled daughter alive

With energy bills set to soar, parents of children with disabilities are calling on the government for urgent help to keep their families alive through the harsh winter months.

Carolynne Hunter, 49, is one such mother, whose daughter Freya, 12, has severe and complex health problems, is non-verbal and blind, has cerebral palsy, and requires full-time oxygen and at-home nursing care.

Freya's mum says her daughter requires a "huge amount of equipment that supports her to stay alive” with her bedroom and bathroom resembling an “intensive care micro ward at home”. This already makes her household bills significantly higher than average.

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The family also requires the help of at least two NHS nurses to care for Freya, monitor her heart rate, and carry out regular suctioning to keep her airways clear.

Carolynne has been paying £6,500 per year to run Freya's life-support equipment, and to heat their home in Tillicoultry, Scotland.

But Clackmannanshire Council Energy Advice Service has since warned Carolynne that if the energy price cap rises by 88 per cent, her energy bill could hit £17,700.

This was before the Energy Price Guarantee was announced, which is set to end in April 2023.

The energy price cap is currently expected to rise by 73 per cent when the current guarantee ends, meaning Carolynne's family are still looking at a hefty five-figure bill.

Carolynne, who works full-time on a moderate wage, isn't receiving the same financial aid as those on lower incomes.

"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," said the mum.

Carolynne is calling 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".

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In August, former chancellor Nadhim Zahawi said the government was working 'flat out' to develop more options to support households.

An open letter to the government, signed by 83 groups, is now calling for leaders to provide energy assistance payments for families of seriously ill and disabled children unable to access medical grants from the NHS.

James Taylor, director of strategy at Scope, one of the signatories, 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."

Meanwhile, Matthew Reed, chief executive of Marie Curie - another signatory - 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 per cent of excess winter deaths attributable to cold, damp housing, this could cost lives.”

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