Mum faces £17,000 energy bill to keep disabled daughter alive

A mother is facing a £17,000 home energy bill to operate the life-support equipment her disabled daughter needs to stay alive.

Freya Hunter, 12, has severe cerebral palsy and relies on receiving oxygen for chronic breathing problems.

Her mother Carolynne told BBC Scotland it costs £6,500 a year to run the kit and heat their home in Tillicoultry.

But Clackmannanshire Council warned her this bill could hit £17,000 next year due to Freya's "hospital at home".

Carolynne, 49, fears her family will face further fuel poverty amid the UK's economic turmoil.

She also worries that possible winter power cuts in the event of reduced gas supply could put Freya's care at risk.

"My situation is quite unbearable now," said Carolynne, 49. "I've been worrying how to afford to pay for the amount of energy I need for the past seven months.

"The level of care Freya is having is probably on par with what would be happening in an intensive care ward.

"She needs constant heat and the staff need to be comfortable in the room."

In addition to cerebral palsy, Freya relies on receiving oxygen for her breathing problems - particularly through the night.

The family require help from at least two NHS nurses or staff from self-directed support (SDS) - a form of social care.

Staff monitor Freya's heart rate as well as oxygen levels and carry out frequent suctioning to keep her airways clear.

The family lives in a large council house - which is not energy efficient - so there is space for Freya's equipment.

And Carolynne, who works full time on a moderate wage, does not receive the same support as those on low incomes.

"Our situation is very complex, it's like we don't fit in," she said. "Our energy is way above average but I don't earn enough to pay for it.

"And we've cut back on everything that we can. My older daughter and I historically have lived in fuel poverty as we don't use the heating in the rest of the house.

"We freeze so I could afford to pay for what's needed for Freya."

Earlier this year, Clackmannanshire Council's Energy Advice Service told Carolynne that if the energy price cap rose by 88% in January, her energy bill could reach £17,700.

This was prior to the Energy Price Guarantee being announced, which will now end in April 2023.

And a recent forecast by Cornwall Insight suggested the energy price cap could rise by 73% for average consumers - although the prediction could be significantly affected by changing wholesale prices.

It means the family still face a possible five-figure bill.

The Hunters are among the families whose financial futures have been rewritten after Chancellor Jeremy Hunt dismantled policies from the mini-budget.

Anyone on the major benefits - such as universal credit - should expect a rise in what they receive. However, that will not come until April.

There is no clarity yet on whether this rise will be in line with rising prices, or the lower increase in average wages.

Carolynne, who does not get universal credit, does not know whether she will qualify for additional support on top of Freya's disability payment.

Mr Hunt said there would be "difficult decisions" to come on tax and spending - but support for the most vulnerable would be prioritised.

Carolynne added: "I'm struggling to pay what I have to pay just now. Having to wait until April to see whether I would qualify for targeted support is detrimental to my mental health.

"We're not the only family in Scotland or in the UK suffering like this."

In sharing Freya's story, Carolynne hopes governments will be encouraged to direct support to families that provide a high level of medical care for loved ones at home.

She said this should include being prioritised for solar panels and battery storage - particularly in light of the National Grid warning that households could lose power for up to three hours this winter.

She said: "If I don't have power how can I keep Freya alive? How on earth am I supposed to manage a team of staff? How are they meant to look after Freya safely if there's not any power?

"Have I to phone an ambulance every day and take her to hospital? This is a massive problem and there's not been anybody from the government thinking about how do we address this."

Clackmannanshire Council has been approached for comment.