Why does the UK not give paid leave to parents who care for seriously ill children?
Parents with seriously ill children are left destitute and at risk of losing their homes because of “callous” laws that deny them paid time off work, campaigners have warned.
The UK is one of only two European countries that does not offer paid leave for parents who have to stop work if their child develops a chronic or life-threatening illness, such as cancer.
Countries including Spain, Sweden, Portugal, FranceBelgium, Germany, Greece and Denmark offer at least paid parental leave if the child is seriously ill, according to an analysis by experts from the University California, Los Angeles. Great Britain, as well as Cyprus, offer nothing.
NHS figures show there are 4,300 hospital visits by children each year that end up staying at least two months – often the same children return multiple times – and many parents will have no choice but to take unpaid leave. Some are even forced to resign.
“We see mums who have had to quit their jobs and sell clothes to make ends meet,” says Ceri Menay-Davies, founder of It’s Never You, a charity that supports parents of children with cancer. “When you’re a parent whose child has cancer or a life-limiting diagnosis, the last thing you want to worry about is paying the bills.”
Alastair Christie, pictured with his son Gideon, stopped working completely for 18 months while the boy underwent cancer treatment
Gideon, now eight years old, had aggressive soft tissue cancer. Alistair said: “I stopped working completely. I didn’t know how long my son would live, and I wanted to be with him.”
Rachel Kirby-Ryder, chief executive of the charity Young Lives vs Cancer, says: “When a child is diagnosed with cancer, often families are rushed to hospital with only the clothes on their back to start treatment straight away. Many parents and carers have to stop work immediately to be with their child.’
One parent who has experienced this difficult situation is project manager Alastair Christie, from Coventry, who had to leave his £75,000-a-year IT job when his four-year-old son Gideon was diagnosed with an aggressive soft tissue cancer in 2019 – rhabdomyosarcoma.
“I stopped working completely,” says 43-year-old Alastair. “I didn’t know how long my son would live, and I wanted to be with him.”
Gideon underwent 18 months of intensive treatment while Alastair looked after him full-time. His wife, Suzanne, who has an auto-immune disease that meant she could not be Gideon’s main carer, continued her part-time civil service job to help pay the bills.
Although Alastair initially received six months’ sick pay due to stress, he later had to rely on Universal Credit and Disability Allowance (DLA). The benefits provided an income of £800 a month (£9,600 a year), which did not cover their mortgage, let alone other bills. “I went from a high-paying job to a negligible income,” says Alastair. “We cut everything, but there were so many extra costs. Travel to and from the hospital and parking fees cost a fortune. And when you’re in the hospital, you buy ready-made food, which is more expensive.”
Alistair, pictured with his family, quit his £75,000-a-year IT job to look after his baby
Friends raised money for the family and they also received £200 for the charity. “It’s only because of their generosity that we’ve been able to keep our house going,” says Alastair, who recently returned to a management role after more than three years away from work. Gideon, who is now eight years old, is also doing well.
It’s Never You is campaigning for the Government to introduce a statutory Child Sickness Pay policy that would work in a similar way to Maternity Pay – providing funds from diagnosis for a year and ensuring that parents have work to do they may return after treatment ends.
Mr Menay-Davies adds: “When you look at it on paper it seems heartless – why is there no support for these parents who are already suffering so much?”
About 1,800 children get cancer every year, and 6,000 children are born with or have heart problems. Research by the University of York shows that around 87,000 children in the UK suffer from life-limiting or life-threatening conditions.
Caring for a sick child also typically adds £730 a month to the average family’s costs, according to the charity Young Lives vs Cancer. Additional costs include transportation to and from the hospital, parking fees, and sterilization equipment and cleaning supplies.
Alastair returned to work after his son’s treatment. He said it was difficult to survive on welfare and the family was lucky to keep their home
Families typically have higher electricity bills as children undergoing chemotherapy need to be kept warm to reduce the risk of infection.
Spain and Sweden have no limits on paid leave if a child is seriously ill, while parents in Portugal get up to six years of leave. Parents in Latvia can receive up to three years, and parents in Italy and Ireland – two years of financial support. In France, Belgium and Denmark, a vacation lasting about a year.
At the other end of the spectrum, Germany offers ten days of paid leave and Greece gives up to 22 days, while in the US parents get none.
Amy Raub, a senior fellow at the Center for Global Policy Analysis at the University of California, Los Angeles, says: “The UK is an outlier not only in Europe but globally.”
Pediatric leukemia specialist Dr Jack Bartram, a consultant pediatric haematologist at a London hospital, agrees that parents need financial support. “Every day I see parents who are doing everything they can to support their children through illness, but are overwhelmed by financial worries,” he says.
Teacher Kathryn Edwards has been out of work since her eight-year-old son Kaiden was diagnosed with medulloblastoma, a malignant brain tumor, in June. Since then, Kayden has spent months undergoing surgeries, chemotherapy and proton therapy. His treatment should end in September. Catherine says she feels “lucky” because her employer, a special school, allowed her to take six months of her own fully paid sick leave due to the stress. She gets another six and a half months of pay, but that will end before Kaiden’s treatment ends.
“I have no idea what we’re going to do then,” says Catherine, 42, who lives in High Wycombe, Buckinghamshire, with her electrician husband Simon, 41, and brothers Kaiden, Jacob, 14, and Elias, two .
Last year, Young Lives vs Cancer set up a crisis fund offering grants to families struggling to pay their bills and has already awarded 1,000 of them, totaling more than £300,000.