Devoted South Shields mother's energy costs plea to Government for the machines which keep her daughter alive

“Try living in my shoes, Rishi”

The words of a devoted mother whose terminally ill child depends on two machines to keep her alive, as she pleads with the Government to to help families of children with life-limiting conditions while she “eats only one meal a day” amid rocketing energy bills.

When Hannah Jones was born premature at 25 weeks, she developed necrotising entrocolitis, a condition which led to her having total intestine failure and her large bowel also had to be removed.

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Doctors said she wouldn’t live past the age of one, but after 17 operations she has defied the odds to recently celebrate her tenth birthday, although parents Katy and Ryan Jones have been told “she will never get better” and that the condition is life-limiting.

Hannah is unable to consume and process food orally and relies on a total parental nutrition machine which she is hooked up to for 16 hours each day.

The electricity dependent machine releases and pumps Hannah’s solution based food and medication into her heart through a tube.

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Katy, 32, has also had to buy and run a second fridge to ensure Hannah’s food and medication are stored at the right temperature.

Hannah’s dependence on the additional machinery coupled with the escalation in the cost of energy has seen the family’s monthly bills rocket from £180 per month to £687.

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Mother Katy Jones and daughter Hannah Jones with the total parental nutrition machine used to feed Hannah.

With Katy and Ryan unable to work due to Hannah’s full-time care needs as well as those of brother, Joshua, 11, who has ADHD, it’s a situation which has “pushed the family to the brink”.

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Katy said: “Running the fridge and the machine isn’t a choice as for Hannah it’s the difference between life and death. Hannah also has a stoma bag which means I have to use the washing machine a lot more than normal. We also need to keep the house warm as she’s at risk of infection.

"To cover the costs of the energy bills, both myself and Ryan are either not eating or limiting ourselves to one meal per day. We’re trying not to use the heating as much and are using fleece blankets to keep warm.

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“We’ve got a mobility car to take Hannah to and from appointments but it’s currently sat on the drive as with the cost of the energy bills we can’t afford to put fuel in.”

Mother Katy Jones (left), daughter Hannah, and founder of The Charlie and Carter Foundation, Sarah Cookson MBE.
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Like all households, since October 2022, the family have been in receipt of an additional £67 per month as part of the Government’s Energy Bills Support Scheme, but Katy said she’s annoyed “no additional provision for energy support” has been made for families with disabled children, despite their dependence on high energy equipment to either keep them alive or improve their quality of life.

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She said: “It’s an awful situation to be in. We didn’t ask to have a poorly child and not be able to work. Rishi Sunak should try living in our shoes for 24 hours and see what it’s like.

"I’d much prefer to be working, but Hannah needs our care 24-hours-a-day. I think the Government should start visiting disabled households and see how difficult it is to cope with these additional energy costs.

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Mother Katy Jones at the additional fridge used to store Hannah's medicines and solution based food.

"My simple message to the Government is we need help.”

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Katy and her family have previously received financial support from The Charlie and Carter Foundation, set up by Sarah and Chris Cookson MBEs after the tragic death of their two children who were born with a “number of life-limiting conditions”.

The Foundation provides temporary financial support for families of children with life-limiting conditions, often paying their bills for several months which enables the parents to “focus on making memories with their sick children”.

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For Sarah, Katy’s story is sadly becoming too familiar.

She said: “Mortgage payments and rent used to be the two biggest areas we provided financial support but the primary help being asked for now is for energy bills. When we started in 2014 it used to be around £80 per month but for most families we are currently helping it’s now over £600.

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"Families are often in arrears and terrified their electric and gas will be cut off.”

Hannah Jones, 10, has to be hooked up to the total parental nutrition machine for 16 hours everyday.
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Sarah’s son Charlie tragically passed away at the age of two, and Sarah knows from her own experience just how dependent families are on electrical equipment.

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She Said: “Some children, like Charlie, are dependent on a continuous supply of oxygen. They are also on a SATS monitor to keep a constant check on their oxygen levels. These machines are often required 24/7.

“For families of children with life-limiting conditions, using or charging the machines which keep their children alive is not a choice, yet they are not receiving any additional energy payments.

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"People just use the electricity and have to worry about the bills later. They’ve provided this payment for everyone but some people need help more than others.

"The current energy payment support from the Government really doesn’t touch the sides of the families we support.”

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Responding to the situation a Government spokesperson said: “We understand this is a difficult time for families across the country, including those living with a disability, which is why we have put in place immediate support.

“This includes direct cost of living support payments to vulnerable households worth £1,200, plus an additional £150 Disability Cost of Living Payment. On top of this, the Government’s Energy Price Guarantee will save the typical household around £900 this winter.”