Parents of critically ill children are being \u201ccrushed\u201d by a lack of statutory financial support when they need to take time off work, the parents of a six-year-old boy who died of cancer have said.<\/p>\n
Hugh Menai-Davis was diagnosed with a rare form of the disease when he fell ill suddenly in October 2020. The boy, then aged five, had been happy and healthy before he developed severe stomach pains.<\/p>\n
A GP initially told Hugh\u2019s mother, Frances Menai-Davis, over the phone that it was probably gastroenteritis and would pass in a few days. She decided to take Hugh to hospital after growing concerned about his abnormally swollen stomach.<\/p>\n
Tests showed Hugh had a rare type of cancer called rhabdomyosarcoma, which affects muscles attached to the bone and is diagnosed in about 50 children every year.<\/p>\n
He underwent 10 months of treatment, including 16 weeks of intense radiotherapy, when his parents had to sacrifice work to be at his bedside at Addenbrooke\u2019s hospital in Cambridge.<\/p>\n
Hugh Menai-Davis died in 2021.<\/p>\n
Although the treatment was initially successful \u2013 Hugh was \u201cjumping around the house\u201d and the family thought he had overcome the disease \u2013 the cancer remained. Hugh died the following September.<\/p>\n
His father, Ceri Menai-Davis, said the nightmare of seeing their son seriously ill was worsened by worrying whether they could afford to be at his hospital bedside. They realised there was a \u201cdevastating\u201d gap in the support afforded to families whose children are seriously ill.<\/p>\n
At present, parents of babies who are born unwell are entitled to financial support under UK law \u2013 however, this stops once the child is a month old.<\/p>\n
Ceri Menai-Davis, 42, said this meant parents of critically ill children were expected to either take four weeks of unpaid leave, five days of unpaid carer\u2019s leave, or apply for benefits, which are often slow to process and exclude many.<\/p>\n
\u201cParents are being forced to make impossible decisions between staying by their child\u2019s bedside or going to work to keep a roof over their heads. That pressure should never sit on a family in crisis,\u201d he said.<\/p>\n