Parents of seriously ill children should be given paid leave, says children's commissioner
"We should never force parents to choose between holding down a job and being by their child’s bedside," said Children’s Commissioner Dame Rachel de Souza.
Seven individuals have been arrested on suspicion of murder after the death of a newborn baby in South Yorkshire.
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The Children’s Commissioner has called for paid leave for parents with seriously ill or disabled children, saying they should not be forced to choose between “holding down a job and being by their child’s bedside”.
The Government is currently consulting on both paid leave for parents in such circumstances and for unpaid carers – who are currently only entitled to unpaid time off work.
Children’s Commissioner Dame Rachel de Souza said parents across the country have told her of the “impossible choices” they have made “splitting time between caring for their seriously ill and disabled children and trying to hold down a job”.
The Commissioner is urging the Government to introduce 12 weeks of paid leave at 90% of normal pay for the parents of disabled children or those with serious mental or physical health conditions and to extend unpaid carer’s leave from five to 10 days a year.
“Whether a child is diagnosed with cancer, sustains a brain injury, develops complex medical needs or experiences a serious mental health condition, they will need their primary carers to provide love, care and support throughout this time," she said.
"We should never force parents to choose between holding down a job and being by their child’s bedside.”
Dame Rachel said the paid leave must be part of wider reform to the NHS and children’s social care to better support children and families who are “stuck” in hospital because of a lack of support.
She backed the introduction of “Hugh’s Law”, which proposes paid leave for parents of seriously or terminally ill children and is named after six-year-old Hugh Menai-Davis, who died in 2021 after suffering from cancer.
Hugh’s parents, Frances and Ceri Menai-Davis, have campaigned for this change in legislation and criticised the lack of mental health support for families who experience “unimaginable loss”.
The Commissioner said Hugh’s Law should be introduced alongside a form of paid carer’s leave and a right to return to work after a longer period away – helping parents care for children who have complicated or fluctuating needs whilst staying in employment.
Ceri Menai-Davis, co-founder of the It’s Never You charity, said: “No parent should be forced to choose between being beside their seriously ill child and keeping a roof over their family’s head.
“The Government must now listen to families, act on these recommendations and turn Hugh’s Law into legislation.”
A recent report by the Commissioner found that hundreds of children are in hospital unnecessarily on any given day because they do not have the right support to go home.
The discharge delays mean these children are missing out on childhood activities and youngsters needing hospital care are waiting for beds, according to an analysis of NHS England data in the report.
More than 260,000 youngsters spent three or more weeks of their childhood in hospital and 1,300 were there for more than a year, the report published in March found.
Minister for the Future of Work Kate Dearden said: “Serious childhood illness is a heartbreaking situation for families.“I’d like to thank Ceri, Frances and all of those campaigning in the memory of their children.
“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.”