'No one should be forced to beg for time off when their child is fighting for their life'

ITV News

24-06-2025

"No one should have to beg for time off when their child is fighting for their life," two parents have told ITV News in a plea to Keir Starmer to change the law in the name of their late son.
Ceri and Frances Menai-Davis are campaigning for the government to bring in Hugh's Law, which would give parents statutory rights if their child is critically ill.
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 say it means there is a "cruel gap in support", not based on the severity of a child's illness but the date they are diagnosed, leaving many parents without income or job security at the worst possible time.
Hugh's Law "would offer families stability in their darkest hours, it's a moral obligation, not a luxury," Ceri said, adding that parents are often forced to quit their jobs to stay by their poorly child's side.
"Parents are being forced to sell homes, clothes and chose whether they can eat or feed their child," he said.
Ceri and Frances were inspired to start the charity It's Never You and campaign for a law change in memory of their six-year-old son Hugh, who died of cancer in 2021.
"Those are the first words that Frances said to me when he was diagnosed back in 2020: 'You always think it's someone else. It's never you'," Ceri said.
"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."
They are hoping to amend the Employment Rights Bill, which is making its way through Parliament, to enshrine a new 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.
'This is about basic equality,' said Frances. 'All Parents of sick children face emotional devastation and financial stress and yet there is no guaranteed support. Help should not be cut off when a child turns 29 days old, the stress, the anxiety and the worries are still all the same.'
Their local MP, Chris Hinchliff of the Labour Party, urged Prime Minister Keir Starmer to listen to the couple.
"We've got to get this done. We can't just keep kicking the can down the road."
He added: "We've got support for children up to 28 days, but from 29 days that day one financial support that families desperately need at the worst possible time isn't there.
"But these are still children that need their parent with them when they're sick by their bedside. And we've got to have the support that makes that possible. So I really hope that the government will listen to us and we'll take these proposals forward."
He added that the financial implications for the government of bringing in the support would be "tiny".
"We're thinking about seven million pounds a year. In the grand total of government spending, that is minuscule. But I'm absolutely certain that given everything that we are doing as a government to try and support working people, we can find that money."
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 have had several meetings within government to push for the law change and the disability minister has acknowledged their campaign but Sir Stephen Timms said there are "there are no current plans" to introduce the law.
But former Paralympian Baroness Tanni Grey-Thompson has tabled an amendment to Employment Rights Bill in the House of Lords where it appears to have support.
Lord Katz - a Labour whip in the House of Lords - responding to the amendment in the chamber, suggested the government were considering the proposals.
"The government is reviewing an existing... entitlement to carer's leave and considering whether further changes may be helpful in supporting those who provide care to loved ones alongside work and employment," he said.
Ceri and Frances are hoping a majority of peers back the amendment so the bill is sent back to the Commons for reconsideration.
Minister for Employment Rights Justin Madders said: "We recognise the difficulties that parents face when caring for critically ill children, and we know many employers will show compassion and understanding in these circumstances.
"We will look at further support for parents of critically ill children through our Carer's Leave review to help modernise the world of work and provide good jobs for carers through our Plan for Change."