Parents whose children require lengthy hospital care would receive better support under a proposed law inspired by the death of a six-year-old boy.
Tory former minister Sir Oliver Heald will seek to table his Children in Hospital for Extended Periods (Report to Parliament) Bill on Tuesday.
It would make ministers examine the advantages of offering financial assistance to parents whose children undergo prolonged hospital care in a bid to allow them to “concentrate on helping their child rather than worrying about losing money”.
The driving force behind the Bill originates from the personal experience of Sir Oliver’s constituent, Ceri Menai-Davis, who lost his six-year-old son Hugh to a rare form of cancer in September 2021.
Mr Menai-Davis and his wife experienced the challenges of attending and staying in the hospital for weeks while their son’s health deteriorated whilst receiving “no financial help” at all.
Sir Oliver is expected to say: “My constituent is self-employed and lost out financially putting his son’s care first and was only able to manage because of his strong personal position economically, but he feared for others less fortunate who found themselves in this situation.
“I have raised this financial issue with ministers in the Department for Work and Pensions and Health, and been pointed to some limited help such as a parent using annual leave entitlement or unpaid parental leave for dependants, and also that there is bereavement leave.
“But there isn’t any state benefit specifically for parents whose finances are affected because they have been unable to work due to spending time with their child in hospital.”
The Tory former minister will explain that while Universal Credit may partially compensate for the loss of income, eligibility depends on individual circumstances.
He will also say parents who have worked for the same employer for at least one year are entitled to 18 weeks of unpaid parental leave for each child, which can be taken until the child’s 18th birthday.
There isn’t any state benefit specifically for parents whose finances are affected because they have been unable to work due to spending time with their child in hospital— Sir Oliver Heald
Sir Oliver will argue there is currently no provision to address situations such as the one faced by Mr Menai-Davis and his family.
Outlining the merits of his Bill, the North East Hertfordshire MP will add: “This would not cost a great deal as so few cases of this sort occur, but it would mean in tragic circumstances such as these, all parents can concentrate on helping their child rather than worrying about losing money.”
In the wake of the loss of his young son to cancer, Mr Menai-Davis and his wife transformed their pain into action by establishing the charity It’s Never You.
Opening up about his family’s struggles, he told the PA news agency: “You always read it in the papers about children getting cancer and children dying. But you actually never think it’s going to be you until that point, when sadly it is you.”
He said he and his wife contemplated how they could make a meaningful impact, opting to address the lack of bereavement and financial support for parents of very ill children in hospital.
“When Hugh died, we received no bereavement support. We got no-one phoning us up from anywhere. The GP never phoned us up. I tried to reach out immediately for support for PTSD,” he said.
He went on: “What we wanted to do, we wanted to create something that can advise all parents on what to do. And we created It’s Never You and the UK’s only social media platform for parents of children with cancer, where they can access all this information on there.”
On the financial strain faced by families with children in hospital, he said: “I was in a fortunate position where I’m financially okay. But we witnessed other families going through it that literally had no money and even still to this day with the charity. There is no financial help.
“The financial aspect is a massive thing because while you’re treating a child, you’re also worrying about how you’re going to pay your mortgage. And there’s no mortgage break for a sick child. There’s nothing in place whatsoever.”
On what the passing of the Bill would mean to him, he said: “Through my work at the charity, we speak to lots of parents. If you have just lost a child, the last thing you want to do is go and fight that battle again. You just want to escape that world.
“I felt differently, I felt like I had a fire in me to go make sure that he didn’t die in vain and to help others.
“If something like this goes ahead and does get passed, eventually, then my feeling is that Hugh’s memory and his legacy will change the landscape for parents across the UK, because he’s given us the energy to push for this.”
Sir Oliver will present his Bill via the 10-minute rule motion procedure, which allows him 10 minutes to outline his proposals.
The Bill is unlikely to make further progress in its current form due to a lack of parliamentary time to debate Bills tabled by backbench MPs.
