Families with disabled children cutting back on life-saving equipment

4 mins read

Wednesday 16 November 2022

Over a third (39%) of families with seriously ill and disabled children have cut back or stopped using essential disability equipment due to rising energy costs.

That’s three times more than in March, before energy bills started to soar.

Of those, 40% say this is making their child’s condition worse.

These are the worrying findings of our Out of Energy research exclusively revealed on Channel 4 News today, and why we’re calling on the government to deliver urgent targeted support to avert a deepening cost of living crisis.

Energy prices up £600 from April for disabled households

Our research of 3,893 families with disabled children found that households with seriously ill and disabled children are paying on average £1,596 extra a year to run vital equipment. This is up almost £600 since April 2022.

We also found that:

  • Over three quarters (79%) have reduced the amount of energy they use in the last 12 months because they can’t afford their bills.
  • Almost half (45%) say they have not been able to keep their home warm enough for their child’s needs.
  • Only 3% get an NHS medical grant towards the costs of running disability or lifesaving equipment like oxygen concentrators. Families who managed to get a grant said not all equipment is included, and grants rarely cover true running costs.

Amanda Batten, Chief Executive of Contact, said: “Many families with disabled children rely on electrical equipment for their care. Soaring bills over the course of the year mean they now face impossible choices. This is affecting the health of disabled children and adding pressure on already stretched NHS services.

“Families are caught between a rock and a hard place. They can’t get a higher paid job as many have had to give up work to manage their child’s care and appointments. And they can’t cut consumption anymore as it will further impact their child’s health.”

Families need urgent targeted support now

We are working with other disability charities to demand action, including Together for Short Lives and Scope.

Together we are calling for:

  • An immediate uprating of benefits in line with current inflation rates.
  • An energy assistance payment for families of seriously ill and disabled children who are unable to access medical grants from the NHS.
  • The Chancellor to double the £150 disability payment and commit to paying it next year.

We also believe energy companies can do more to help. For example, by reducing direct debits for those on priority registers and households on disability benefits.

Tell the government to act now

We’re hoping Thursday’s Budget addresses the critical need for more support.

But even if not, it’s never too late for the Chancellor to act and put in place immediate help.

Take action: Email your MP with our template email asking them to call on the government to do more for disabled children.

Donate to support our vital work

This winter, thousands of families with seriously ill and disabled children won’t be able to afford to run the life-saving electrical equipment their child relies on.

Dad Taran from Kent is a full-time carer to two-year-old Skye. Skye has chronic lung disease, pulmonary hypertension and complex medical needs after being born four months premature. Taran and Skye launched our Out of Energy research on Channel 4 News.

“I haven’t paid the electricity bill for two months now. I have no idea what to do. I can’t not give her oxygen, but I can’t afford to run the equipment that keeps her alive. It’s scary. If she gets pneumonia, it will be life-threatening.

“Choosing between breathing or freezing isn’t a choice anyone should be made to do.”

Dad Taran

We’re here for families like Taran and Skye’s

With our high-quality, independent finance advice, families can get the help they’re entitled to – more important than ever as the cost of living crisis bites.

And we won’t stop campaigning until the government provides the essential targeted support families with disabled children need.

Donate today