‘I went from having a £75,000-a-year IT job to receiving practically nothing when I quit work to care for my ill son’: Campaigners call for UK to offer more support to parents facing impossible dilemma over their children’s health
- Parents forced to quit work to care for ill children rely on Universal Credit
- Some European nations offer parents special support for more than a year
Parents with seriously ill children are being left destitute and at risk of losing their homes because of ‘callous’ laws that deny them paid time off from work, campaigners have warned.
The UK is one of just two European nations that offer no paid leave for parents who have to stop work when their child develops a chronic or life-threatening disease such as cancer.
Countries including Spain, Sweden, Portugal, France, Belgium, Germany, Greece and Denmark all offer at least some paid parental leave if a child is seriously unwell, according to analysis by experts at the University of California, Los Angeles. The UK, along with Cyprus, offers none.
NHS data shows that each year there are 4,300 visits to hospital by children who end up staying at least two months – often the same children return multiple times – and many parents will have little choice but to take unpaid leave. Some are even forced to resign.
‘We’re seeing mums who have had to give up their jobs and are selling clothes to make ends meet,’ says Ceri Menai-Davis, founder of charity It’s Never You, which 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 be worrying about is paying the bills.’
Alastair Christie, pictured with his son Gideon, stopped working completely for 18 months while the youngster underwent cancer therapy
Gideon, now eight, had an aggressive soft tissue cancer. Alistair said: ‘I stopped work completely. I didn’t know how long my son would have to live and I wanted to be with him.’
Rachel Kirby-Rider, chief executive of the charity Young Lives vs Cancer, says: ‘When a child is diagnosed with cancer, often families are rushed to hospital with just the clothes on their backs to start treatment right away. Many parents and carers have to stop work immediately to be by their child’s side.’
One parent who experienced this difficult situation is project manager Alastair Christie, from Coventry, who had to quit his £75,000-a-year IT job when his son Gideon, then four, was diagnosed with the aggressive soft tissue cancer rhabdomyosarcoma in 2019.
‘I stopped work completely,’ says Alastair, 43. ‘I didn’t know how long my son would have to live and I wanted to be with him.’
Gideon underwent 18 months of intense treatment, while Alastair looked after him full-time. His wife Suzanne, who has an auto-immune disorder that meant she couldn’t be Gideon’s main carer, carried on her part-time Civil Service job to help pay the bills.
Although Alastair initially got six months’ statutory sick pay through his work due to stress, he then had to rely on Universal Credit and Disability Living Allowance (DLA). The benefits provided an income of £800 per month (£9,600 a year), which didn’t cover their mortgage, let alone other bills. ‘I went from a high-salary job to suddenly having negligible income,’ says Alastair. ‘We cut back on everything but there were so many extra expenses. Travel to and from hospital and parking charges cost a fortune. And when you’re in hospital, you end up buying ready meals, which cost more.’
Alistair, pictured with his family, quit his £75,000-a-year IT job so he could care for his child
Friends raised money for the family and they also received a £200 charity grant. ‘It’s only thanks to their generosity that we were able to hold on to our home,’ says Alastair, who has recently returned to a senior position after more than three years away from work. Gideon, now eight, is also doing well.
It’s Never You is campaigning for the Government to introduce a statutory child illness pay policy that would operate in a similar way to maternity pay – providing funds from date of diagnosis for up to a year and a guarantee that the parent has a job to return to once treatment is over.
Mr Menai-Davis adds: ‘When you look at it on paper, it seems callous – why is there no support for these parents who are suffering so much already?’
About 1,800 children develop cancer every year, and 6,000 children are born with or develop heart problems. Research by the University of York suggests about 87,000 children in the UK have life-limiting or life-threatening conditions.
According to the charity Young Lives vs Cancer, caring for a sick child also typically adds £730 a month to an average household’s expenditure. Extra costs include travel to and from hospital, parking charges and sterilisation equipment and cleaning materials.
Alastair has returned to work after his son’s treatment. He said surviving on benefits was a struggle and the family were lucky to keep their home
Families usually also have higher energy bills, as children having chemotherapy need to be kept warm to reduce infection risk.
Spain and Sweden place no limit on paid leave when a child is seriously ill, while parents in Portugal get up to six years of leave. Latvian parents can get up to three years, and those in Italy and Ireland can get two years of financial support. In France, Belgium and Denmark, around a year’s leave is available.
At the other end of the spectrum, Germany offers ten days of paid leave and Greece provides up to 22, while in the US parents get none.
Amy Raub, principal researcher at UCLA’s World Policy Analysis Centre, says: ‘The UK is an outlier, not just in Europe but globally.’
Childhood leukaemia specialist Dr Jack Bartram, a consultant paediatric haematologist working at a London hospital, agrees that parents need financial support. ‘Every day I see parents who are doing their best to support their children through illness but are under immense strain due to financial worries,’ he says.
Teacher Kathryn Edwards has been off work since her eight-year-old son Kaiden was diagnosed with medulloblastoma – a malignant brain tumour – in June. Since then, Kaiden has spent months having surgery, chemotherapy and proton beam therapy. His treatment is due to finish in September. Kathryn says she feels ‘lucky’ because her employer, a special educational needs school, allowed her to take six months of her own sick leave at full pay, due to stress. She gets another six months at half pay, but this will end before Kaiden’s treatment does.
‘I have no idea what we are going to do then,’ says Kathryn, 42, who lives in High Wycombe, Buckinghamshire, with her husband Simon, 41, an electrician, and Kaiden’s brothers Jacob, 14, and Elias, two.
Last year, Young Lives vs Cancer launched a crisis fund offering grants to families who are struggling to pay their bills, and has already awarded 1,000 of them totalling more than £300,000.