Baroness Grey-Thompson (CB)

My Lords, I rise to speak to Amendment 134, which is in my name and that of my noble friend Lady Finlay of Llandaff. The aim of this amendment is simple but vital. It seeks to provide day one financial support for parents of children diagnosed with a serious or life-limiting illness. It would create a new statutory right for parents to take a period of paid leave from employment to care for their seriously ill child. This right would apply to parents of children aged between 29 days and 16 years old who are receiving or have received specified types of medical or palliative care. The duration of this leave, including rate of pay, would need to be set out in regulation. This amendment is tabled in honour of a young boy named Hugh, who sadly lost his battle to rhabdomyosarcoma, a rare form of cancer, at just six years old. His parents, Ceri and Frances Menai-Davis founded the charity It’s Never You to help support the parents of children who have been diagnosed with serious illnesses. They have been campaigning for three years to change the law and are here in the Gallery tonight to listen to this debate. Throughout Hugh’s treatment, Ceri and Frances saw first hand the immense challenges faced by parents—not just the emotional and physical strain of caring for a seriously ill child but the severe financial pressures that come with it. Each year, around 4,000 families in the UK spend two months or more in hospital with their child, who is undergoing treatment for a life-threatening illness. These parents are being forced to make the impossible choice of earning a living or being by their child’s bedside. The current system is leaving these families unsupported at the most vulnerable moment in their lives. Many are selling their homes, their clothes and turning to crowdfunding sites like GoFundMe just to cover basic living costs, which can go against them in any application for universal credit. At present, no parent is entitled to any financial support in the first 90 days of their child’s illness. After 90 days, they can apply for disability living allowance, which would help with the costs of caring for their sick child. But even then, successful DLA applications can take up to 20 weeks to be approved. Of the families surveyed by It’s Never You, 90% believed that immediate financial support would have made a critical difference to the hardships they faced following their child’s diagnosis and treatment. This amendment seeks to build on important progress made through the 2023 Neonatal Care (Leave and Pay) Act. Under this Act, parents of babies admitted to neonatal care within the first 28 days of life and who require a hospital stay of seven continuous days or more, are now entitled to up to 12 weeks of statutory leave with pay for those eligible. This leave is also in addition to existing maternity or paternity entitlements. Regarding these recent legislative changes, the Minister, the noble Baroness, Lady Merron, remarked: “No parent should have to choose between being with their vulnerable newborn or returning to work … We are giving parents peace of mind so they can focus on their family.” Considering this statement, I would like to ask the Minister just one question. The Government clearly recognise that no parent should be forced to have to make such choices between their child’s health and employment. So why are they so reluctant to provide essential financial support to those vulnerable parents who are in equally devastating situations?