Parents of critically ill children ‘crushed’ by lack of support, say campaigners | Society

Parents of seriously ill children are being “crushed” by the lack of legal financial support when they have to take time off work, the parents of a six-year-old boy who died of cancer have said.

Hugh Menai-Davis was diagnosed with a rare form of the disease when he fell suddenly ill in October 2020. The boy, then aged five, was happy and healthy before developing severe stomach pain.

A GP initially told Hugh’s mother, Frances Menai-Davis, over the phone that it was probably gastroenteritis and would go away in a few days. She decided to take Hugh to the hospital after becoming concerned about his abnormally swollen stomach.

Tests showed Hugh had a rare type of cancer called rhabdomyosarcoma, which affects the muscles attached to bones and is diagnosed in around 50 children each year.

He underwent 10 months of treatment, including 16 weeks of intense radiotherapy, when his parents had to sacrifice their jobs to be at his bedside at Addenbrooke’s Hospital in Cambridge.

Although treatment was initially successful – Hugh was “jumping around the house” and the family thought he had beaten the disease – the cancer persisted. Hugh died the following September.

His father, Ceri Menai-Davis, said the nightmare of seeing their son seriously ill was made worse by wondering if they could afford to be at his bedside in hospital. They realized there was a “devastating” gap in support for families whose children are seriously ill.

Currently, parents of babies born sick are entitled to financial support under UK law – but this stops when the child reaches one month of age.

Ceri Menai-Davis, 42, said that meant parents of seriously ill children had to either take four weeks of unpaid leave, five days of unpaid caregiver leave, or apply for benefits, which are often slow to process and exclude many.

“Parents are forced to make impossible decisions between staying at their child’s bedside or going to work to keep a roof over their heads. This pressure should never weigh on a family in crisis,” he said.

The family is lobbying for a new legal provision – known as Hugh’s Law – to entitle parents of children in long-term hospital care to financial help.

Ministers agreed to examine the policy as part of a review launched in November. Around 4,000 children spend more than two months continuously in hospital each year.

Premier League football club Brentford on Monday will become the first UK business to adopt the principles of Hugh’s Law, under which its staff will be entitled to 12 weeks’ full pay if a child becomes seriously ill.

Menai-Davis, from Hertfordshire, said it was “upsetting” to see the club adopt his proposals and that the government is considering introducing them as policy.

“When Hugh passed away, we made a vow to work as hard as possible to change the life of at least one person in his name,” he said. “What families tell us every day is that alongside the absolute nightmare of watching their child fight for their life, there is a constant and overwhelming fear around money and work.

“Even if it only helps one parent, one family, then we succeeded. Seeing Hugh’s name in policy feels like a goal drawn from pain. Wherever Hugh is, I know he would be proud of his mother and father.”

Nity Raj, Brentford FC’s general counsel, said there was “no doubt” the club would offer this support when it heard of Hugh’s case.

He said: “Anyone faced with the tragic situation of a seriously ill child is undoubtedly going through an extremely difficult and distressing time; work should not be an added pressure or worry.

“Our people are important to us and staff wellbeing is a priority for the club. By adopting this policy, which includes paid leave and job protection, we hope we can provide a source of support and reassurance at a time when it is most needed so that families can focus on their caring responsibilities.”