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Dame Rachel de Souza, the children’s commissioner, has urged the government to establish a legal entitlement for parents of seriously ill or disabled children to receive paid leave from work. She proposes that this leave should amount to 12 weeks at 90% of the employee’s usual pay, aiming to alleviate the significant financial and emotional burdens families endure when caring for children with severe health conditions.
Her comments coincide with ongoing government consultations about how best to provide financial assistance to families and unpaid carers responsible for children with serious illnesses in England, Scotland, and Wales. Dame Rachel emphasized that parents should never have to choose between being with their gravely ill child and maintaining their employment. She highlighted the difficult decisions many families face as they try to balance caregiving with job responsibilities.
In addition to advocating for paid leave, Dame Rachel supports extending unpaid carer’s leave from the current five days to ten days annually and introducing a form of paid carer’s leave. She also endorsed the proposal for a “right to return to work” after taking extended leave, which could enable parents of children with complex or fluctuating health needs to manage their work and caregiving duties more effectively.
This call for reform follows the campaign led by Frances and Ceri Menai-Davis, whose son Hugh died of cancer at age six in 2021. They have pressed for changes in employment law to guarantee a minimum of three months’ salary for parents during periods when their child faces a serious illness. Ceri Menai-Davis highlighted the lack of statutory rights allowing parents to stay at their child’s hospital bedside, saying, “If you’re a parent with a child, there is nowhere else you are going to be other than their bedside.” The government’s consultation on these proposed changes is set to conclude shortly, with minister Kate Dearden pledging to review the submissions carefully with the aim of enhancing support and employment rights for affected families
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