Date published: 02 December 2025 by Sophie Wichman
Speaking today about the Health and Social Care Committee Expert Panel: Evaluation of Palliative care in England report, Zillah Bingley, Rainbow Trust's Chief Executive, said:
“We welcome this important evaluation of palliative and end-of-life care. We are pleased to see Rainbow Trust’s evidence reflected in the report, and that the experiences of the families we support have been heard at this national level.
“The report confirms that children’s social palliative care is still not recognised, planned for or commissioned with the urgency it requires. Although all Integrated Care Systems referenced palliative and end-of-life care in their Joint Forward Plans, only 71% included any focus on children and young people. This must change if the system is to deliver equitable care for all ages.
“Conclusions drawn in the report based on the evidence heard state that priorities vary for the Integrated Care Boards (ICBs), creating a ‘postcode lottery’ in the provision of palliative and end of life care services. It also found that these services are under significant strain and that the specialist palliative care workforce is in a ‘critical situation,’ with serious workforce shortages within children and young people’s palliative and end of life services.
“Children’s palliative and end-of-life care is not delivered by the NHS, social care and hospices alone. The wider voluntary sector, including Rainbow Trust’s home-and community-based social palliative care, plays an essential role yet receives no routine statutory funding. If Integrated Care Boards are to commission and fund palliative and end-of-life care effectively, they must fund the whole landscape, not only NHS and hospice provision.
“The evaluation also highlights major gaps in bereavement support, with many families unable to access help when they need it. Rainbow Trust supports families before, during and after the death of a child, and bereavement for the whole family must be funded as an integral part of children’s palliative care.
“This report offers a timely opportunity to build a comprehensive, all-age approach to improving palliative care. With the Department of Health and Social Care expected to respond within two-months, and a further evidence session planned in the new year, this is a clear moment for change. As the NHS Modern Service Framework moves towards implementation, Rainbow Trust wants clarity on next steps, timelines and who will be involved in shaping decisions. We stand ready to offer Minister Stephen Kinnock our support and expertise, and we want to ensure that Rainbow Trust has a seat at the table as this work progresses.
“Integrated Care Boards must commission across health, social care and the voluntary sector so that every family, wherever they live, can access the practical, emotional and social support they need at the hardest of times.”
