Baroness Grey-Thompson (CB)

My Lords, I will speak to Amendment 97 in my name. First, I thank the Ministers for taking the time to meet to discuss this important matter, and specifically the noble Lord, Lord Katz, and his team, for meeting over the weekend. This is a simple amendment about protecting the families of sick children. It is being called Hugh’s law. Hugh died of cancer at the age of six. His name is now etched into this amendment, not as a symbol but as a legacy. I would like to thank Hugh’s parents, Ceri and Frances, for being here again today. They are sitting in the Gallery, as they did in Committee. Since Hugh’s death, his parents have devoted their lives to ensuring that no other family has to endure the trauma of watching their child suffer through endless treatments, sleeping on hospital floors with their life on pause, and without financial protection, job security or peace of mind. I cannot imagine anything worse than watching your child die and having to make the choice between being with them or potentially losing your home. This is an important time not just for parents but for siblings. I know that my noble friend Lady Finlay of Llandaff, who is unfortunately not able to be in her place today as she is attending a funeral, would have wanted to talk about the trauma and impact on the wider family situation. In the time it will take us to complete this stage of the Bill, more than 1,000 parents across the UK will be told that their child has a life-threatening illness. Some will be in hospital for weeks; others, tragically, will never leave. Unlike most of us here today, Hugh’s parents do not have to imagine that moment; they have lived it. They know the unbearable fear, the crushing helplessness, and the impossible choice between work and being at their child’s bedside. They are campaigning for this because they know that the current system fails these families. It leaves them exposed, unsupported and forgotten by a framework that recognises the needs of newborns but not of children like Hugh, who were older than 29 days when they fell ill.