We have welcomed today’s ministerial update (4 June 2026) setting out the UK Government’s plans for improving access to high quality palliative care for babies, children, young people and adults in England. We are now urging ministers to go further by setting out a sustainable funding and workforce model for children’s palliative care – and being specific about children in their palliative care goal.
In its interim report on the work it is doing to develop a palliative and end of life care modern service framework (MSF), the government sets out its goal for palliative care services across England. It also signals several areas in which will act, including how its approach to holding local NHS bodies to account for planning, funding and providing palliative care will change.
Nick Carroll, Chief Executive Officer of Together for Short Lives said: “I welcome the government’s commitment to focus on the specific needs of babies, children and young people living with serious illness in the modern service framework. I support the decision to include performance and accountability metrics for children’s services, and thank ministers and officials for meaningfully engaging Together for Short Lives and other representatives of the children’s palliative and end of life care sector in the process so far.
“I am pleased to see NHS England’s decision to specifically ask health and care systems to assess the palliative care and end of life care needs of their local populations – and to strategically commission the services they could benefit from.
“Every child deserves many moments of happiness together with their loved ones. But for many families who need palliative care, the system is falling short, leaving parents and siblings feeling isolated and alone, and children missing out on life-changing support.”
We are concerned that babies, children and young people are not specifically mentioned in the palliative care goal that the government has set out. All those representing children with serious illness and the professionals and services that care for them have been clear that citing children in the goal will be vital if we are to make sure local NHS bodies and councils meet families’ distinct needs.
Nick Carroll said: “In a system where families of children with serious illness are often overlooked, it is vital that ministers are more specific in their goal: the final MSF should explicitly state that every baby, child, young person and adult who needs palliative care or care at the end of life will have equitable access to high quality support, shaped by what matters to them, their families and carers.”
“As the MSF moves towards completion, it will be important for ministers and officials to work with us to urgently make sure that all families of children with serious illness can access high quality care, when and where they need it, through a system which is sustainably funded and staffed. Only by doing so can the government realise the ambitions they have set out today."
Nick Carroll, Chief Executive Officer of Together for Short Lives