When Hugh was diagnosed with cancer at age five in October 2020, his father faced a harsh reality shared by many parents of seriously ill children: balancing the urgent needs of treatment with financial pressures. Hugh’s father recounts the steep costs involved, from travel and parking near the hospital 60 miles away to everyday living expenses, totaling around £8,000 over the course of treatment. Despite running his own business and having some flexibility, he acknowledges that countless parents in less accommodating jobs face an impossible choice between earning an income and being present for their child’s care.

Hugh died in September 2021 at age six. In response to their experience, Hugh’s parents founded a charity, It’s Never You, to support families confronting similar crises. Their work has highlighted a systemic gap: in the UK, parents of critically ill children have no statutory entitlement to paid leave to care for their child beyond early parental and neonatal provisions available only in the child’s first year of life. As a result, many parents exhaust annual leave, take unpaid absence, reduce hours or leave work entirely, leading to widespread financial hardship.

The charity’s research reveals that 95% of parents face financial difficulties following such a diagnosis, with nearly 90% cutting work hours or leaving employment. These challenges coincide with deteriorating mental health for 79% of affected parents. The legal framework currently does not address the unique situation of parents needing to be physically and legally present to consent to medical treatment.

To address this, Hugh’s Law has been proposed as a targeted solution offering paid, protected leave for parents and primary caregivers of seriously ill children. The proposal emphasizes eligibility based on a simple hospital confirmation rather than complex assessments, flexibility to accommodate the variable course of illness, and job protection with a pathway back to work. Advocates stress that the policy is intended as a limited safety net for a relatively small group facing extraordinary hardship, not an open-ended entitlement.

Employers have a stake as well. The loss of experienced staff due to resignations or dismissals carries costs in recruitment and training. Some organisations, including Brentford FC, have voluntarily implemented policies aligned with Hugh’s Law, covering more than 30,000 employees across various industries. Nevertheless, advocates argue that voluntary adoption is insufficient and that statutory rights are needed to ensure equity regardless of employer goodwill.

The Children’s Commissioner for England, Dame Rachel de Souza, has supported improved paid leave policies that begin at the outset of serious illness and remain available through recurring hospital admissions or worsening conditions. A University of Liverpool policy briefing also noted that the UK is among a minority of OECD countries that offers no compensation for parents unable to work due to a child’s illness, and found that paid leave benefits income stability, employment retention, productivity, and reduces staff turnover.

Following years of campaigning, the UK government launched a formal consultation in June on employment rights for unpaid carers and parents of seriously ill children, specifically addressing proposals like Hugh’s Law. The consultation period ends September 1. Advocates underscore the urgency of converting consultation into concrete legislation to prevent families from facing financial ruin while caring for their sick children, a situation no parent should be forced to confront.