Proposal for law supporting parents of critically ill children blocked by Labour
Under current law, parents of newborn babies who become unwell within the first 28 days of life are entitled to paid leave and job protection to be by their child's bedside.
But if their child is diagnosed with cancer at 29 days old, the parents no longer have the right to financial support.
Ceri and Frances Menai-Davis, who lost their young son to cancer, are campaigning for the government to bring in Hugh's Law, which would give parents statutory rights if their child is critically ill.
It would have given parents the right to statutory paid leave and job protection from day one for parents whose child is diagnosed with a critical or terminal illness, up to the age of 16.
The campaigners had been hopeful that the Employment Rights Bill could be amended by the lords after positive meetings with government officials - but to their disappointment, Labour ordered its peers to vote against the proposal.
Asking for an explanation, Ulster Unionist MP Robin Swann said Employment Rights Minister Justin Madders MP had "turned his back" on the parents.
Responding, the minister said: "We're not turning our back on parents or children. We're actually having the biggest expansion in workers' rights and family-friendly policies that we've seen in a generation.
"Clearly, we're not going to be able to satisfy every issue in this area. But that's the point of this review. We're looking at the system in the round. It needs improving, needs modernising. And that's what we intend to do."
Why did Labour block Hugh's Law? Minister Justin Madders MP responds
Ceri said it was "deeply disappointing" to see Labour reject the proposals, given they appear to have cross party support.
Despite ordering peers to reject the amendment, Labour whip Lord Katz suggested in the House of Lords that the government could still bring in Hugh's Law at a further date.
"We will consult on support for parents of seriously ill children, including the proposal for Hugh's Law," he said, describing the campaign as an "extremely important matter".
Ceri and Frances set up the charity It's Never You and began campaigning for a law change in memory of their six-year-old son Hugh, who died of cancer in 2021.
"After he passed away, and during the time that he had treatment, we witnessed parents just going through the worst time, obviously looking after their child, but also the worst time financially.
"And we realised at that point there is nothing in place in the UK that provides support, financial support to parents of a sick child."
At present, parents of critically ill children must rely on unpaid Carer's Leave, which is capped at just one week per year. Disability living allowance is available to claim on behalf of the child, but parents must wait 90 days before applying and an application can take up to 20 weeks to be processed.
Ceri and Frances say the situation means there is a "cruel gap in support", not based on the severity of a child's illness but the date they are diagnosed.
But the government's offer of a consultation does not fill them with much hope.
"While we welcome the government's offer of a consultation, we are concerned that this could become yet another review that fails to deliver real change.
"The proposed consultation won't begin until 2026, with no guaranteed outcome or legislative timetable. That is simply not good enough for families in crisis right now."
Ceri added: "We have again reached out to ministers in the Department for Business and Trade and to the deputy prime minister, whose bill this amendment was part of, requesting a meeting and open dialogue. To date, we have had no response.
"The fight for Hugh's Law continues. This is no longer a niche policy concern. It is becoming a matter of public conscience. Families deserve urgent action and Hugh's Law must be addressed with the seriousness and speed this crisis demands."
A government spokesperson said: "We recognise the challenges that parents face when caring for seriously ill children, and we know many employers will show compassion and understanding in these circumstances.
'We pay tribute to the tireless campaigning from It's Never You in memory of their son, Hugh. We will continue to work with them as part of our review of carer's leave, which will look at further support for parents of seriously ill children.'
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