North East MPs backing calls for better support of parents of seriously ill children
The MPs are supporting Hugh's Law
Three North East MPs are supporting a campaign for parents of serious ill children to have the right to paid leave and better support.
City of Durham's Mary Kelly Foy, Hartlepool's Jonathan Brash, and North Durham's Luke Akehurst are all backing Hugh's Law.
Ceri Menai-Davis, who is from Hertfordshire, lost his six year-old son Hugh to a rare form of cancer in 2021.
Hugh's Story
Ceri Menai-Davis, who co-founded the charity It’s Never You in memory of his son Hugh, completed a huge walking challenge earlier this month, carrying the names of 450 children affected by illness and Hugh’s shoes in his backpack alongside a letter signed by 125 MP's and peers. He placed the shoes on the steps of Number 10.
MP's who have signed the Hugh's Law petition
MP's who have signed the Hugh's Law petition
Hugh was diagnosed with rhabdomyosarcoma, a rare soft tissue cancer, in 2020. What began as what seemed like a simple stomach upset turned into a devastating diagnosis within just a week.
Ceri told us about the diagnosis.
“Almost five years ago this week, my eldest son, Hugh, was diagnosed with a rare soft tissue cancer called rhabdomyosarcoma. It came from nowhere. He was fine at school and then, within seven days, we were being told he had cancer,” Ceri said.
Hugh spent ten months being treated at Addenbrooke’s Hospital, including six months as an inpatient, undergoing intensive chemotherapy and radiotherapy. He rang the bell to mark the end of his treatment in May 2021, but tragically relapsed and passed away two weeks after his sixth birthday that September.
"It's never you"
Ceri and his wife were left trying to cope not only with their son’s illness, but also with the emotional and financial strain of spending months in hospital, away from work and home.
“We felt like the parents of these children were being let down,” he said. “There’s so much support focused on the child, and rightly so, but very little for the parents trying to hold everything together.”
That experience led the couple to create It’s Never You, named after his wife’s words on the day of Hugh’s diagnosis: “You always think it’s someone else. It’s never you.”
The charity provides parents with emotional and practical support, from free counselling and financial help through their Hughy Fund, to peer networks and guidance through our Children’s Cancer Platform.
Hugh's Law
They are also leading the campaign for Hugh’s Law, the right for parents to take paid leave when their child is critically ill, something he says is absent from today’s society.
"You have to press pause on your life... pressing pause means everything stops and your world stops spinning because your child is sick in bed in a hospital and needs months of treatment to even get them out of the hospital again.
"So you should have no worries about the outside world, but the outside world keeps spinning, even though yours has stopped. And that includes the electric metre ticking over, your mortgage needs to be paid and all the other bills. And your children need to be fed well. If you have to press pause in your life, that means your money stops coming in.
"Currently, parents can leave work, but all they're entitled to is sick pay or holiday leave. There's no statutory leave and pay for these parents to leave work. There is, if your baby is born sick or falls sick within the first 28 days of life, through the Neonatal Leave and Pay Act, where they can get up to 12 weeks paid leave to be by the bedside of the child. And the government recognises, in a statement, we understand that parents need to be by the bedside of a child that's sick in hospital, but that's not recognised if your child is 29 days old up to 16 years old. And so to have in the first 12 weeks of an illness, a mum or a dad or guardian, being able to focus solely on the child and have a minimal amount of money coming in, you'll be able to keep the lights on. You'll keep the wheels ticking over, and also you'll give them a guarantee that you know you're not going to lose your job...
"We want to make sure that these parents are maintained and retained at work. And also, it's not just about that, it's about further down the line when the child gets better, these parents want to go back into work. They don't want to leave the workforce. They've trained their whole lives for this, something like this should not prevent them from pursuing their dreams."
New Proposal
Working with Baroness Tanni Grey-Thompson, Ceri has helped table a new amendment to the Children’s Wellbeing and Schools Bill, which would require the Secretary of State to report to Parliament on the barriers that prevent parents from being by their child’s bedside during hospital care.
The proposed report would examine:
- The adequacy of current support for parents and families.
- Barriers such as financial pressures, work commitments, and mental health struggles.
- Options for better support, including how to reduce these barriers.
- The impact that improved parental support would have on a child’s care, wellbeing, and family life.
The amendment also ensures that both the House of Commons and the House of Lords would have to debate the report, making the issue a matter of public accountability.
Ceri hopes that, if passed, the amendment will be the first step towards enshrining Hugh’s Law in legislation.
“It’s a long road ahead, but this is the start,” he said. “If one parent gets more time with their child because of this, then Hugh’s legacy will already be changing lives.”
"I promised my son that when he died, everyone would know who he was"- walking to Downing Street
Ceri told us during the walk he had people join him and show support to their cause, and that it was filled with emotions.
"I took the shoes that he wore into that hospital on the 6th September but never wore out and placed them outside the hospital and took a picture and I'd looked at that picture now and then when I was doing the walk just to think, this boy inspires me to do what I've done because what he did and what he went through was just so courageous, more than I can ever imagine what I could go through...
“It was humbling,” he said. “He (Hugh) was with me all the way. I promised my son that when he died, everyone would know who he was, and I’ll keep going until real change comes.”
"In the same situation, I'd probably want to curl up and not do anything, what he went through and just the bravery, what he did drives me on and helps me do all these silly things that I do in his memory."