The parents of a six-year-old boy who died from a rare cancer have launched a campaign to highlight how families with critically-ill children are being financially "crushed" by a lack of statutory support when they need to take time off work.
The Tragedic Case of Hugh Menai-Davis
Hugh Menai-Davis was a happy, healthy five-year-old until he suddenly developed severe stomach pains in October 2020. After a GP initially suggested gastroenteritis over the phone, his mother, Frances Menai-Davis, grew concerned about his abnormally swollen stomach and took him to hospital.
Tests revealed Hugh had rhabdomyosarcoma, a rare muscle-affecting cancer diagnosed in only about 50 children in the UK each year. He underwent ten months of gruelling treatment, including 16 weeks of intense radiotherapy at Addenbrooke’s Hospital in Cambridge, during which both parents had to sacrifice work to be at his bedside.
Although treatment initially seemed successful, the cancer remained. Hugh died in September 2021.
A 'Devastating' Gap in the System
Hugh's father, Ceri Menai-Davis, 42, explained that the nightmare of their son's illness was compounded by the stress of worrying whether they could afford to be with him. They discovered a critical flaw in UK support systems.
Currently, parents of babies born unwell are entitled to financial help, but this provision stops once the child is one month old. For parents of older critically-ill children, the options are stark: take up to four weeks of unpaid leave, use five days of unpaid carer’s leave, or apply for benefits, which are often slow and exclude many.
"Parents are being forced to make impossible decisions between staying by their child’s bedside or going to work to keep a roof over their heads," Ceri Menai-Davis said. "That pressure should never sit on a family in crisis."
The Push for 'Hugh's Law' and Early Support
The family is now campaigning for a new statutory provision, dubbed Hugh’s Law. This would entitle parents of children in long-term hospital care to financial support. The government has agreed to consider the policy as part of a review launched in November. An estimated 4,000 children a year spend more than two months continuously in hospital.
In a significant early victory, Premier League club Brentford FC will become the first UK company to adopt the principles of Hugh’s Law. From Monday, its staff will be entitled to 12 weeks of full pay if a child becomes seriously ill.
Nity Raj, Brentford FC’s general counsel, stated there was "no question" about introducing the support after hearing Hugh's story. "Anyone who faces the tragic situation of a critically ill child is undoubtedly experiencing an extremely challenging and distressing time; work should not be an added pressure or worry," he said.
For Hugh's parents, the campaign gives purpose to their pain. "When Hugh passed away, we made a vow that we would work as hard as we could to change the life of at least one person in his name," Ceri Menai-Davis said. "To see Hugh’s name written into policy feels like purpose pulled from pain."
