Career Breaks: Parents of Seriously Ill Children

Robin Swann Excerpts

Monday 3rd February 2025 Westminster Hall

[Robin Swann (South Antrim) (UUP)]

It is a pleasure to serve under your chairmanship, Ms Vaz. I thank the hon. Member for Keighley and Ilkley (Robbie Moore) for introducing the debate and pay tribute to Christina for starting the petition that allowed the issue to be brought to this Chamber. I also wish Skye continuing good health.

No parent should have to choose between work and supporting a sick child through a terminal illness, life-limiting illness or serious illness that leads to an extended stay within a hospital facility. As was mentioned by the hon. Member for Keighley and Ilkley, the charity It’s Never You, founded by Ceri and Frances Menai-Davis, has petitioned for Hugh’s law. From its research, it has estimated that this issue affects up to 4,000 children per year across the UK who are spending 60 days or more in hospital. That is a rough estimate, but although 4,000 sick children may seem small compared to what our health service supports, that is 4,000 families who experience the likes of the challenge faced by Christina and Skye’s family.

I will deviate slightly now, because it is personal experience that so often shapes debate around here and how we bring forward progress. Our youngest son, Evan, was diagnosed pre-birth with a congenital heart defect. He had a single kidney and atresia of the bowel. We were told before Evan’s birth that we could expect an extended stay in hospital to support him through his initial stages of life. He celebrated his first birthday in hospital; he spent the first 13 months of his life in the Barbour ward of the Royal Belfast Hospital for Sick Children. I pay tribute, as I am sure many parents would, to the workers on children’s wards who take on additional caring responsibility given the additional strains put on family life.

Although today’s petition looks at the financial implications of having a child in hospital over an extended period, many families also face emotional challenges in how they try to find not just a work-life balance, but a family-life balance as well. Many have other children at home who need support. I value the strength of today’s petition, because it is what this place should be about. We need to support families and individuals on a very local, specific, individual basis. Surely, if we have been elected to this place, that is what we should be about. I thank the right hon. Member for Rayleigh and Wickford (Mr Francois) for encouraging this debate and the petition, because subsequent surveys have indicated just how crucial this issue is.

I look forward to the Minister’s response. There is an expectation on Government that surely we could do something for the families and children who find themselves in these circumstances. Unfortunately, as a Government, as politicians and as a health service, we leave the work to be carried out by charities and families. I speak from experience. When I was Health Minister in Northern Ireland dealing with these circumstances, we had the Northern Ireland Children’s Health Coalition, which was 13 local charities that came together to look for a young patients fund to support parents in this situation financially. If the best we can really do is to look to charities to carry that work forward, there is a failing in what we and this Government want to be about.

It was estimated that the financial cost to a family was £351 per day. There is a suggestion that even unpaid leave would be welcome, but we also have to look to what the call is from Hugh’s law in regard to supplying financial support. In response to the petition, we surely have to consider how we can support families and children so that we take part of the financial stress away. That would also alleviate the emotional stress put on the parents and families who support the children who have extended stays in hospital.

In closing, I thank the Petitions Committee for granting this debate. I thank the contributors and I especially thank Christina for starting this initiative and getting the debate to this place.