'The heating stays ON due to Charlie's anaemia': Rutland mum on the "cost of caring"

Parents of disabled or seriously ill children are facing an uphill battle with the cost of care

Published 10th Oct 2022
Last updated 10th Oct 2022

The 'cost of caring' for disabled or seriously ill children could be worsening the impact of the cost-of-living crisis on some parents in Stamford and Rutland, a report says.

New research, from the charity Family Funds, shows that specialised costs needed to properly support or treat vulnerable children with extra needs is piling more financial pressure on low-income households.

READ MORE: 12-year-old Rutland hero with Chronic Kidney Disease goes viral this #OrganDonationWeek

In some cases, parents are having to keep the heating on to make their children comfortable, while those who are caring full-time for their kids are unable to work and earn money at a time when prices are so high.

Melina, from Oakham, looks after her 12-year-old son Charlie who has Chronic Kidney Disease and needs 10 hours dialysis treatment every night to survive.

She says she knows parents who are having to return their children to hospital as they can't afford the care:

'I am already hearing, increasingly, of parents transferring the care back to hospitals as it's actually cheaper to do so rather than covering the costs of medical treatments themselves.'

'It's worth pointing out that it's not just the reliance on electricity to run Charlie's dialysis machine and, the reality is - without it he wouldn't survive past two weeks.'

'We have the extra cost of having to run heating due to Charlie's anaemia - he can have a duvet on, a quilt on and still be really cold at night.'

The cost of raising disabled children

According to Family Funds, the cost of caring for disabled children is just as - if not higher - than what parents like Melina are having to pay to care for their sick child.

'In September 2021, families raising disabled children reported their household bills had increased by an average of £800 a year. By June 2022, this increase was more than £1,500', the report stated.

In fact:

  • 9 in 10 parents raising disabled children said they were struggling to keep up with rising household bills.
  • Three in four families raising disabled children (76%) report having to buy some form of specialist goods and services without any financial support
  • Almost all families raising disabled children (98%) reported paying out more on regular costs than families with non-disabled children
  • Four in five families (83%) say their disabled children’s overall health and wellbeing has declined in the past year

The Government says its energy support scheme will see an average household pay up to around £2,500 on energy bills per year, saving £1,000 on the proposed Ofgem price cap.

Support for households in receipt of means tested benefits will also be given via a one-off Cost of Living Payment of up to £650, made in two instalments.

Hear all the latest news from across the UK on the hour, every hour, on Greatest Hits Radio on DAB, smartspeaker, at greatesthitsradio.co.uk, and on the Rayo app.