On Monday, Andy Burnham became Prime Minister promising to be a “circuit-breaker for Britain”, rebuild public services and create what he described as a more preventative state. Of everything he said in his first speech, one commitment stood out above all others: his pledge to help people live well by investing in success, rather than paying for failure.
That ambition is welcome, because it goes to the heart of what children and families with serious illness need from public services: earlier support, better coordination and care that prevents avoidable crises.
If the government is serious about building a preventative state, it must recognise that prevention is not only about stopping people from becoming ill. It is also about helping people live as well as possible when illness cannot be prevented. For thousands of babies, children and young people with serious illness, and their families, prevention means avoiding crises, reducing unnecessary hospital admissions and ensuring families receive timely, joined-up care before they reach breaking point.
For a family caring for a child with complex symptoms, prevention can mean having specialist advice available to manage symptoms, or being able to access care at home rather than making a potentially distressing trip to hospital. These are not abstract system benefits; they are practical interventions that protect children’s quality of life and keep families together when they are under immense pressure.
Done well, children’s palliative care is exactly the kind of preventative approach the Prime Minister says he wants to champion and the appointments of Yvette Cooper as Health Secretary and Diana Johnson as Minister of State offer an immediate opportunity to translate this ambition into action.
Yet, as ministers consider NHS reforms and the future of adult social care funding, they must ensure that children with serious illness are not overlooked. Their distinct needs mean children’s palliative care must be built into decisions about planning, workforce, funding and accountability from the outset, and not treated as an afterthought.
This is particularly important given the postcode lottery families continue to face when accessing high-quality children’s palliative care.
Across England, the way in which services are planned, funded and provided varies drastically. Whether a family can access the support they need, including 24/7 end of life care at home, too often depends on where they live rather than what they need. That cannot be right.
The forthcoming Modern Service Framework (MSF) for palliative and end of life care provides a real opportunity to address this unwarranted variation. By setting clear expectations and clarifying responsibilities, it can help ensure that every child with serious illness receives consistent, high-quality support. I commend and thank Stephen Kinnock, the outgoing care minister, for beginning the process to develop it.
National standards and guidance alone will not solve the problem. Integrated care boards (ICBs) must be meaningfully held to account for how they commission the care children and families need, including whether they provide access to specialist children’s palliative care, 24/7, where families need it. Without that accountability, variation will persist, and families will continue to face an uneven system.
The new government’s commitment to investing in success rather than paying for failure is also highly relevant to the future funding of children’s palliative care. In fact, in many ways, children’s palliative care is the ultimate test of that commitment.
Today, children’s palliative care services, including children’s hospices, are supporting more children with increasingly complex needs than ever before. Through vital symptom management support, hospice-at-home services and end of life care at home provision, these services help families avoid unnecessary hospital stays and ensure children’s quality of life is as good as it possibly can be. Yet, the sector is facing a £310 million funding gap and significant workforce shortages, including among specialist paediatric palliative medicine consultants and NHS community children’s nurses.
If ministers want a health service that intervenes earlier, works more effectively and delivers better outcomes for patients, investing in children’s palliative care must be a critical part of the solution. It cannot be an optional extra.
That means providing sustainable, multi-year funding for the health elements of children’s palliative care, supporting the workforce needed to deliver care closer to home, and ensuring services are commissioned in a way that delivers consistency and value for money.
Ultimately, the success of this new government will be judged not only by the reforms it announces, but by the difference those reforms make to people’s lives. The Prime Minister has spoken about helping everyone to live well, rebuilding public services and creating a more preventative state. For children with serious illness and their families, those ambitions must translate into something tangible: reliable support, joined-up care and equitable access to sustainable services regardless of where they live.
