‘There’s no support for us at all’: The realities of caring for a disabled child during a heatwave

Dan White and his partner did not sleep on Monday night, desperately trying to keep their daughter safe in the excruciating heat. Emily, who cannot regulate her temperature, was fluctuating between dripping with sweat and feeling extremely cold.

As temperatures soared to record levels, disabled people and their carers faced unprecedented challenges. Vulnerable people are most at risk of serious illness caused by extreme temperatures, and their carers are plunged into deeply worrying situations.

Emily has spina bifida, meaning she cannot stand, hydrocephalus, or fluid on the brain, and autism. The 16-year-old uses a wheelchair as she has no feeling in her lower limbs.“Her top half can feel very warm,” White, who is an author, campaigner and works for Disability Rights UK, explains, “whereas her legs can be icy cold. We’ve had times in the winter where I’ve had to use a hairdryer on her feet to get the colour back into them.”

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Monday was the hottest night recorded in history. “It was awful,” White says, “as were the last few nights. We gave her a shower and, after the shower, she felt cold, so she asked to be wrapped up warm, which we did. 

“She cannot physically sit herself up or take the covers off herself. The only option is to call us. That’s what we’re here for as parents, and we love them very much. 

“But as you can imagine, that creates a scenario where you’re caring all day, and then you’re caring all night. It gets to the point where you do all that and you forget to look after yourself. You forget to drink water and it just exacerbates the situation.”

The MS Society issued a warning that 60 per cent of people with multiple sclerosis feel their symptoms worsening in the heat. Age UK also urged elderly people to be careful to remain cool. The heat impacts electrical equipment too, with important medical gear more susceptible to failing in high temperatures. 

“I’d like to see an increase in all benefits to matching inflation,” White says. “I’d also like to see energy companies reassess the way they deal with their disabled customers. And I’d like the government to get a grip on the climate promises because these heatwaves are only going to last longer year after year. Disabled children are so susceptible to heat and it could be fatal.”

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Emily Holzhausen, policy director at Carers UK remarks: “It adds further pressure to what is often already a stressful situation with a lot of responsibility so it’s really important that unpaid carers are able to care for themselves to stay well when performing such an important role. We know that the health and wellbeing of unpaid carers has deteriorated in the last two years and that more unpaid care is now being given than ever.”

Chloe Long’s eight-year-old son Theo has severe learning disabilities, autism and a rare genetic condition. “He’s completely non-verbal and requires care for every element,” she says. “He needs support around the clock. He isn’t able to use the toilet, he has pads and he obviously struggles for communication. He doesn’t understand concepts like danger.”

Even an ordinary night comes with its challenges. “He doesn’t sleep well during the night,” she explains, “so we have to be there for him to kind of watch out for any seizures in cases and just to meet his care needs during the night.”

When it is hot, Theo cannot understand why he feels uncomfortable and he cannot tell his parents that he is struggling. Long adds that his bedroom has to be almost empty because otherwise he would pick things up and could throw them or put them in his mouth. 

“It would be too dangerous to have a fan in his room,” Long says.“It would be too dangerous to leave his windows open in case he tried to climb out, so it’s so hard. We also have to keep the door shut because we don’t want him to get out of the room at night and potentially go into the bathroom and turn on the tap and try to get downstairs and fall.”

Theo sleeps less when it’s hot because he is uncomfortable. He has to wear a nappy at night, and usually they will put him in a onesie to stop him from putting his hand in his nappy. But it’s too hot for that, so they have to keep an especially close eye on him. They also have to go into his room regularly to check on him and give him water, because they couldn’t leave the bottle in there in case he poured it over himself. 

Carers UK is calling for “an immediate £1.5 billion [in government funding] to give carers the breaks so many desperately need”. White is also calling on the government to do more to support carers through the cost of living crisis. 

“We get a carers allowance that we get paid weekly,” White says. “We get paid £69 a week. That’s essentially to provide care for a child. That works out at 39p an hour over a year. It’s an offensive amount of money to give someone.

“It is just so hard for carers at the minute. We’ve got the cost of living crisis, fuel bills are rising, electricity is rising. Disabled children use so much equipment that drains power, so our energy bills are higher than anyone else’s. No, really, there’s no support for us at all.”