Parents ‘risk losing homes’ to be with their sick children, campaigner says
Parents of seriously ill children are taking work calls from hospital rooms and risking losing their homes to stay by their child’s bedside, a campaigner said.
Ceri Menai-Davis, whose six-year-old son Hugh died in 2021 from cancer, said he has seen parents trying to “navigate” the workplace while their children received life-saving treatment.
Mr Menai-Davis and his wife Frances are campaigning for the introduction of “Hugh’s Law”, which proposes paid leave for parents of seriously or terminally ill children for up to 12 weeks.
Speaking to BBC Radio 4’s Today programme on Monday, Mr Menai-Davis, co-founder of the It’s Never You charity, said the proposed law would allow parents to be with their child during the most “harrowing” time of their lives.
He said: “Hugh was diagnosed in 2020, so we started his first chemotherapy day on the first day of the second lockdown, and so we spent six months isolated during his major treatment.
“But we witnessed parents – in effect at that time being paid to be by the hospital bed with furlough, which was around at that time, but when Covid started lifting, the restrictions started lifting – we watched parents try and navigate the workplace in the hospital room next to their child, taking Zoom calls, writing reports, being pressured by bosses, whilst on the other side of the screen, their child is receiving life-saving treatment.
“Chemotherapy makes you violently sick sometimes, and other things that go along with it, and I hear parents daily talk to us about losing their homes, maxing credit cards out, families splitting up because they can’t deal with the pressures of the finances that goes along with a sick child, and as a society where we’re supposed to be helping people, the most vulnerable. I think this is one of the things that we can really target.”
The Children’s Commissioner, Dame Rachel de Souza, has backed the introduction of “Hugh’s Law”.
She 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 UK 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.
She said: “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.
“We should never force parents to choose between holding down a job and being by their child’s bedside.”
The UK 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.
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.”
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