Parents of critically ill children crushed' by lack of support, say campaigners

"She decided to take Hugh to hospital after growing concerned about his abnormally swollen stomach. 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. 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's hospital in Cambridge."

"At present, parents of babies who are born unwell are entitled to financial support under UK law however, this stops once the child is a month old. 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's leave, or apply for benefits, which are often slow to process and exclude many."

Hugh Menai-Davis fell ill suddenly in October 2020 and was diagnosed with rhabdomyosarcoma, a rare muscle-attached cancer affecting about 50 children per year. He underwent 10 months of treatment, including 16 weeks of intense radiotherapy, and initially appeared to recover before the cancer returned; he died in September 2021. Parents had to sacrifice work to be at his bedside at Addenbrooke's hospital in Cambridge. UK statutory financial support covers babies born unwell only for the first month, leaving parents of older critically ill children to rely on unpaid leave or slow, exclusionary benefits. Families face impossible choices between bedside care and earning income.

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