Behind their brave smiles, the family of little Nathan Peet are facing an agonising situation every single day.
Nathan, aged three, has a rare type of spina bifida and cannot walk. Each day he is attached to a feeding pump. Each night he needs an oxygen machine to keep him breathing.
The gruelling treatment takes its toll – and not just on poor Nathan. Soaring energy bills means his mum Louise, her partner and Nathan’s sister Jess have been pushed to the brink.
They face the terrible prospect of going without meals to keep Nathan’s vital machines running. Louise said: “It makes you feel anxious. Like you’ve failed as a parent.”
The Peets, who live in Rotherham, South Yorkshire, are struggling to pay their £200-a-month electricity and gas bill. Louise and her partner are Nathan’s full-time carers.
Louise receives Carer’s Allowance and a Legacy benefit, a payment to families who are unable to work because they are looking after disabled children. Louise’s partner is also on Carer’s Allowance and gets monthly benefit payments.
Louise, 37, told The Sunday People : “My partner and I sometimes go without food and live off tea and coffee to ensure Nathan’s needs are met.”
“When Nathan was first born he ate orally, but his condition deteriorated and he now has oxygen, a PEG (Percutaneous Endoscopic Gastrostomy) feeding pump and hoists which all need charging at night.”
Nathan suffers from a type 2 chiari malformation of spina bifida which causes brain tissue to extend into the spinal cord.
There are measures to help families with disabled kids but current average household energy bills are £2,500, nearly double what they were in 2021.
And the annual rate of inflation hit a 41-year high in October of 11.1%.
There is a cap on how much energy suppliers can charge per unit and Child Winter Heating Assistance Benefit offers families with a disabled child £214.10 a year – only about the average family’s monthly bill.
Family Fund, the UK’s leading charity for disabled children, found 58% of families raising a disabled child skipped meals in the past year.
A further 48% are cutting back on energy and more than 75% said their disabled child’s health had declined in the past 12 months. The energy bill for Anne Vivian-Smith, 52, from Nottingham, who suffers from a neurological condition, has soared.
She said: “I rely on an electric wheelchair and ceiling hoists to get me in and out of bed. My bill has gone from £80 to £320 in under a year.”
“In total, I rely on seven pieces of electrical equipment that need charging every day.” Anne said a lot of the energy advice online is “inappropriate” for disabled people.
She added: “I keep reading articles about timing your showers for four minutes to save electricity, but I need two people to help me shower and it takes at least 20 minutes.”
Family Fund’s Cheryl Ward said: “The majority of families we support, raising a disabled, or seriously ill child tell us they are now struggling to survive as a result of winter bill pressures on top of the cost-of-living crisis.”
“Families who’ve always had to pay three-times higher costs to care for their child now have to navigate mounting debts and constant worries about how to clothe and feed their children.”
The charity Scope helps households where one or more disabled people live. Hard-up folk get a 45-minute call with an energy adviser which includes tips about how to reduce electricity, gas and water costs.
Scope’s Tom Marsland said: “Disabled people have always faced extra expenses, but the cost of living crisis has exacerbated this. Lots of disabled people have specialist equipment that uses more energy, and cutting down can be detrimental to their health.”
Ian Byrne, Labour MP and food campaigner, described the situation horrific.
He said: “The Government’s energy policy is impacting disabled people across every community in the UK. “We’re seeing parents go without food to ensure their children are fed, it will only get more severe.”
* A previous version of this article reported that Nathan cannot walk or talk. We have since been advised that this is incorrect as Nathan is able to talk. We are happy to clarify this.
