We must do more to support parents of children receiving care in hospital for extended periods

My constituent Ceri Menai-Davis contacted me after the loss of his six-year-old son Hugh to a rare cancer on 18 September 2021. He and his wife, Frances, had a terrible ordeal for more than 10 months, attending hospital and at times commuting daily, as they watched their son rapidly decline over a number of months in hospital from a sporty youngster to his sad passing. When Mr Menai-Davis contacted me at the end of 2021, they had just set up a charity called It’s Never You, which are the words that Mrs Menai-Davis said to her husband when they got the diagnosis. They wanted to help parents of very ill children in hospital with mental and physical support and to call for some financial help.

Cases where children are in hospital for extended periods are rare. The reply I received to a written question showed that about 4,000 children a year spend more than two months continuously in hospital. Of course, not all of those are cases where the parents go to hospital every day or stay there.

Mr Menai-Davis asked if I could arrange for him to meet a Health Minister to lobby for better care of parents. I did that, and the then Minister of State, Edward Argar, held a meeting with us on 24 March 2022, where he heard about a range of practical problems with care for parents in hospitals, including the availability of food and mental support. The Minister asked for full details, and we prepared documents, which we sent to him, to inform the work on the new generation of children’s hospitals, including on facilities for parents of very sick children. He responded constructively on issues of outreach to parents, food for parents staying in hospital with children, improved facilities for families in the new hospitals programme and linking NHS charities with the work of It’s Never You.

Through my constituents’ charity, parents or guardians of sick children benefit by connecting with a community of peers, finding support, including moral support, sharing experiences, and getting professionally sourced and reliable information via a social network. That is done not by the statutory authorities but through the Children’s Cancer Platform, which is the UK’s only platform built exclusively to support parents in this difficult situation. The charity has started to put wellbeing bags into hospitals such as Addenbrooke’s and Great Ormond Street; they are about to go into Oxford University Hospitals as well. The bags are well received. The charity is also present in Manchester, Birmingham, Cardiff, Leeds and many more places. It has partnered with several charities across the UK and aims to form an umbrella, whereby all relevant charities can be found in one place.

Addenbrooke’s in Cambridge is, of course, the major hospital for East Anglia, and it is also the site for a new children’s hospital. The team there have had productive meetings with Mr Menai-Davis in which he has shared insights, which the team have described to me as “inspiring”. However, the aspect of this Bill raised by my constituent is the financial impact on parents of having to spend months in hospital supporting sick young children. My constituent is self-employed, and it cost him a lot to put his child first. He was able to manage only because of his strong personal position economically, but he feared for others who were less fortunate and found themselves in the same position. He gave me examples of people his charity is helping.

I have raised the financial issue with Ministers in the Department for Work and Pensions and the Department of Health and Social Care and have been pointed to some limited help, such as a parent being able to use their annual leave entitlement or unpaid parental leave for dependants. There is also bereavement leave, but there is not any specific state support for parents whose finances are affected because they have been unable to work due to spending so much time with their child in hospital.

A family in that situation may be able to claim universal credit or, if they are already on universal credit, to get an increase to compensate partly for the drop in their income, depending on the individual circumstances. Parents who have worked for the same employer for at least a year are entitled to 18 weeks’ unpaid parental leave for each child, which can be taken until the child’s 18th birthday, but there is nothing specific to deal with a situation such as occurred here.

In the Bill, I am asking for a report to be made to Parliament by the Secretary of State on “the merits of providing financial support for parents of children receiving care in hospital for extended periods.”

That would not cost a great deal as there are so few cases of this sort, but it would mean that, in tragic circumstances such as these, all parents could concentrate on helping their children rather than worrying about money. In a way, the Bill is also about Ceri Menai-Davis and his wife Frances being able to help other parents who find themselves in the situation that they found themselves in. In some ways, it is a

Sir Oliver Heald MP

The Rt Hon Sir Oliver Heald is the Conservative MP for North East Hertfordshire, and was first elected in 1992.