The government will launch a consultation into giving employment protection and financial assistance to the parents of critically or terminally ill children next year, despite blocking these amendments to the Employment Rights Bill in July.
Hugh’s Law, named after Ceri and Frances Menai-Davis’s six year old son who passed away from a rare form of cancer in 2021, would give parents job protection and entitlement to statutory paid leave from the first day of their child’s diagnosis.
While Hugh’s parents have called a consultation a step in the right direction, they are calling on the government to deliver real change.
Speaking to Politics UK, Ceri said: “After 3 years of tireless campaigning we are pleased that the Government has confirmed a consultation on Hugh’s Law will begin in 2026.
“That recognition matters and is welcomed, but we are cautious as a consultation does not change lives, legislation does.
“Right now, parents of critically ill children are left without protection. They face an impossible choice between being at their child’s bedside or keeping their job.
“Other forms of leave; maternity, paternity, adoption, bereavement are protected in law. Yet the sudden, devastating reality of a child’s illness has no equivalent safeguard.”
Currently, paid leave and job protection is only given to parents whose children fall unwell in the first 28 days after birth. After that, parents lose their entitlement to the financial support which allows them to stay at their child’s bedside.
Parents of children over 29 days old rely on taking unpaid Carer’s Leave, unpaid parental leave, or claiming Disability Living Allowance (DLA). However, Carer’s Leave is limited to one week per year, with the process of waiting to apply for DLA and the application itself potentially taking 32 weeks – over half a year.
The announcement came after a parliamentary drop-in on Tuesday (2nd September) held by Ceri and Frances’s charity It’s Never You, which they established after Hugh’s passing. The drop-in received cross-party support from Labour, Conservative, Liberal Democrat, and Ulster Unionist MPs.
Ellie Thompson, founder of Billy’s Batallion, a charity focussed on fighting DIPG, a form of pediatric brain cancer, told Politics UK: “I recently attended the parliamentary event for Hugh’s Law with my MP, Chris Coghlan, who has pledged his full support. Losing my little boy, Billy, to a brain tumour last year, I know first-hand just how important this legislation is.
“It is vital that the government step up to support families better throughout the worst times of their lives. Current law places parents in a cruel and commonplace predicament to choose between their child’s care and their family’s financial survival.
“Billy’s Battalion is proud to support It’s Never You, a charity founded by parents who, like us, have lived through the darkest days imaginable.”
Posting on X in support of next year’s consultation, Labour MP Grahame Morris wrote: “Parents shouldn’t be forced to take unpaid leave or risk losing [their] job while their child is fighting for life. The financial, emotional & mental strain is devastating”.
Independent MP Chris Hinchliff similarly pledged his support on X, stating: “Parents of seriously ill children should never have to choose between paying the bills and being at their child’s bedside.”
“The Labour Government announcing a consultation is a crucial step – now we must ensure it delivers for families,” his post continued.
Ceri also noted the need for the consultation to enact legislative change, telling PoliticsUK: “We need stronger commitment from the Government that any consultation findings will be enacted.
“Parents can’t wait years for ‘reviews’ while families fall into financial ruin. The UK lags behind over 30 OECD countries who already offer this protection.”
A government spokesperson told Politics UK: “We recognise that serious childhood illness represents a challenging and stressful time for families, which is why we have committed to a public consultation on support for parents facing this situation.”
They continued: “We will continue working with It’s Never You as we develop this consultation, and we pay tribute to their tireless campaigning in memory of their son Hugh.”
The charity has already faced delays in getting Hugh’s Law passed through parliament. According to ITV, Labour ordered its peers in the House of Lords to vote against their proposed amendments to the Employment Rights Bill.
Analysis of the debate, held on 16th July this year, indicates financial concerns caused the delays in passing Hugh’s Law, referred to as “amendment 97” in the Bill.
According to It’s Never You, around 4,000 children are hospitalised for two months or more, with the cost of caring for chronically ill children during this two month period estimated at £750 per month.
The charity suggests that it would cost the government six million pounds to provide financial support to these 4,000 parents for the two months before they are eligible to receive DLA.
However, the government suggests the costs could be much greater depending on eligibility across the UK and estimated uptake.
During the debate, Labour whip Lord Katz explained: “The actual cost could be significantly higher, depending on how serious illness and other eligibility criteria are defined. Therefore, the overall financial impact will depend on the final definitions and scope used to determine eligibility”.
However, he did suggest that Hugh’s Law could be introduced at a later date, committing to consulting on possible support for the parents of seriously ill children.
He also stated that other methods of support should be considered, noting the importance for the government to explore all avenues of approach and cost to ensure “good law” and “the very best outcome for parents”.
Following the debate, the government faced backlash from Ulster Unionist Party MP Robin Swann, who said that Employment Rights Minister Justin Madders MP had “turned his back” on Ceri and Frances, who had attended positive meetings with government ministers.
In response, the minister suggested the government was not turning its back on families, but rather “having the biggest expansion in workers’ rights and family-friendly policies that we’ve seen in a generation.”
Posting on X after receiving news of the consultation, It’s Never You stated that they would be moving into “Phase 2” of their campaign. This includes pushing the government to turn the consultation into legislation, pushing “again in the House of Lords”, and pushing MPs to “keep asking the difficult questions”.
Ceri reinforced the charity’s determination to enact legislative change, telling PoliticsUK: “We will continue to press harder for action. Hugh’s Law isn’t a luxury, it’s about dignity, fairness, and giving families the basic right to be with their child when they are needed most.”
Images supplied by Ceri and Frances Menai-Davis.
