Children's Commissioner Dame Rachel de Souza has called for legislation guaranteeing parents of seriously ill or disabled children the right to 12 weeks of paid leave at 90% of normal pay. The intervention addresses what campaigners describe as an impossible situation: families forced to choose between caring for a child facing life-threatening illness and maintaining employment income.
Dame Rachel's formal consultation response, published on 31 August 2026, backs the paid leave entitlement and argues that eligibility should be verified through a certificate from a relevant healthcare professional. According to the Children's Commissioner's office, the measure would lift the "immense pressure" and lost earnings that families endure when a child develops a debilitating condition.
She said:
Parents should not be forced to choose between being at their seriously ill child's bedside and keeping their job.
The commissioner has also advocated for a "right to return to work" following extended caring-related absences, similar to protections available under maternity leave law. This safeguard would enable families whose children have complex or fluctuating needs to remain in employment while providing necessary care.
For unpaid carers more broadly, Dame Rachel called for unpaid carer's leave to be increased from five to 10 days annually, alongside the introduction of a new paid carer's leave entitlement. According to employment law analysis, the government consultation is considering multiple payment options for such leave, including 90% of normal pay, 50% of normal pay, statutory parental pay, or Statutory Sick Pay.
What parents have experienced
Dame Rachel reported that parents have described the "impossible choices" they face when dividing time between caring for seriously ill and disabled children and maintaining employment. These accounts form the basis of her push for statutory protections that do not currently exist in law.
The campaign for paid leave rights has been driven by Frances and Ceri Menai-Davis, whose son Hugh died of cancer at age six in 2021. The couple have advocated for what has become known as Hugh's Law—a change to employment law requiring employers to guarantee three months' salaries to parents whose child faces serious physical or mental illness. According to the Hugh's Law campaign, the government consultation explicitly includes this proposal as part of the reforms under consideration.
Ceri Menai-Davis said in June:
There's no specific right that allows the parents to legally be by the bedside of the child in hospital. If you're a parent with a child, there is nowhere else you are going to be other than their bedside.
In a sign of growing recognition for the principle, Brentford FC became the first organisation to officially adopt the principles of Hugh's Law on 12 January 2026, providing paid leave and job protection for parents of critically or seriously ill children.
Current legal framework and gaps
Under existing law, parents currently rely on unpaid parental leave, unpaid carer's leave of up to five days annually, flexible working requests, and dependants' leave unless individual employers offer more generous support. This patchwork of provisions leaves many families financially vulnerable during periods of serious childhood illness.
Government consultation and next steps
The government's consultation on employment rights for unpaid carers and parents of seriously ill children is scheduled to close on 1 September 2026. According to the Department for Work and Pensions, ministers will then consider responses and decide whether to strengthen employment rights for families facing serious childhood illness. The NHS Employers summary indicates that any new provisions are not expected to come into force until 2027.
Kate Dearden, minister for the future of work, said:
Serious childhood illness is a heartbreaking situation for families. I've been incredibly moved by the powerful stories we have heard, and we will move quickly to consider how we can strengthen support and employment rights for families facing serious childhood illness.
Key facts
- Dame Rachel de Souza is calling for 12 weeks of paid leave at 90% of normal pay for parents of seriously ill or disabled children
- The government consultation closes on 1 September 2026, with any new rights expected to take effect in 2027
- Hugh's Law, named after Hugh Menai-Davis who died of cancer aged six in 2021, proposes three months' guaranteed salary for affected parents
- Unpaid carer's leave would increase from five to 10 days annually under the commissioner's proposals
- Eligibility would be verified through a certificate from a relevant healthcare professional
