Parents of children with serious illnesses or disabilities should have a legal right to 12 weeks of paid leave from work at 90% of their normal pay, according to Children's Commissioner Dame Rachel de Souza.
De Souza stated that this measure would help lift the "immense pressure" and lost earnings that families endure when a child develops a debilitating condition. She emphasized that parents should not be forced to choose between caring for a seriously ill child and maintaining their employment. "Parents should not be forced to choose between being at their seriously ill child's bedside and keeping their job," de Souza said.
Her call to action comes as the government continues its consultation on how to provide financial support to families and unpaid carers looking after ill children. The consultation is scheduled to close on Monday.
Parents have shared accounts of making "impossible choices" when balancing the demands of caring for seriously ill or disabled children with the need to hold down a job. De Souza also advocated for a "right to return to work" after extended leave periods, which could assist families whose children have complex or fluctuating needs to remain employed while providing necessary care.
For unpaid carers, de Souza recommended increasing unpaid carer's leave from five to 10 days per year and introducing some form of paid carer's leave. Her intervention follows campaigning by the parents of Hugh Menai-Davis, who died of cancer at age six in 2021. His parents, Frances and Ceri Menai-Davis, have pushed for changes to employment law to guarantee three months' paid leave for parents whose children face severe physical or mental illness.
"There's no specific right that allows the parents to legally be by the bedside of the child in hospital," Ceri Menai-Davis previously stated. "If you're a parent with a child, there is nowhere else you are going to be other than their bedside."
Minister for the future of work, Kate Dearden, acknowledged the gravity of the situation, stating, "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."