Parents caring for seriously ill children in UK could get financial support under ‘Hugh’s law’

Thousands of parents who are forced to become full-time carers after their child becomes seriously ill would be entitled to financial support and job protections under new “Hugh’s law” proposals being floated by the government.Hugh’s law is named after Hugh Menai-Davis, who was six when he died in 2021 just under a year after being diagnosed with a rare form of cancer and undergoing 10 months of intensive treatment, much of it in hospital.Hugh’s parents, Ceri and Frances Menai-Davis, subsequently launched a campaign to fight for extra employment protections for parents whose lives are turned upside down when their child becomes seriously ill.The proposal is one of a number of pay and workplace changes designed to help unpaid carers return to work, include a right to paid carer’s leave, and a new maternity leave-style “right to return” to work after a period of intensive caring.Launching the consultation, starting on Tuesday, the employment rights minister, Kate Dearden, said: “Whether you’re caring for an elderly parent, a partner with a long-term illness, or a child fighting a serious disease, you shouldn’t have to choose between your job and those you love.”Ministers are concerned too many unpaid carers find it impossible to balance work and caring responsibilities, and as a result either reduce their hours or quit paid work completely, costing the economy billions each year.The Menai-Davises said the consultation represented a “significant moment” for thousands of families who faced the impossible choice between staying by their child’s bedside or going to work to keep a roof over their head.Ceri Menai-Davis said: “When Hugh was diagnosed with cancer, our world stopped overnight. Like thousands of parents every year, we were suddenly expected to become full-time carers whilst trying to hold together our jobs, finances, family life and our own wellbeing.“We quickly discovered that whilst there is a framework to support the child through treatment, there is very little support for the parents standing beside them.”An estimated 11,000 children a year experience serious health conditions requiring substantial care involvement, with about 4,000 families experiencing hospital stays of at least two months and requiring parents to be by their children’s side.Under the proposal, eligible parents would get the legal right to time off from work during a period of acute family crisis and access to a minimum level of financial support and employment protection in line with premature birth and bereavement arrangements.“Hugh’s law is not about special treatment. It is about recognising the reality that when a child is diagnosed with a life-threatening illness, the whole family enters crisis,” said Frances Menai-Davis.He added: “The child receives a treatment plan, but parents are left trying to navigate employment, finances, caring responsibilities, and the emotional trauma of fighting for their child’s life. That has to change.”According to Its Never You, which runs the Hugh’s law campaign, Sweden offers 120 days a year of paid leave to care for sick children. California eight weeks of paid family leave, Canada 35 weeks of caregiver benefits, and France up to 310 days of financially assisted leave.Helen Walker, chief executive of Carers UK, said: “Too many carers currently have no choice but to reduce their hours or leave work altogether because workplace support and employment rights do not reflect the realities of caring.”