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Our NHS provides lifeline palliative care to seriously ill children – but we need to ensure access is available to all

News and comment

As we mark 75 years of the NHS, it is absolutely right that we celebrate the contribution that the service makes to our society. But if we are to truly achieve Beveridge’s vision of a comprehensive medical service for all – including children with life-limiting or life-threatening conditions – then we need a step change in the way in which the NHS plans, funds and staffs children’s palliative care.

In the 1940s, when Sir William Beveridge and Aneurin Bevan set out their vision of a welfare state in which treatment covering every form of disability would be available to all, I doubt they could have imagined an NHS providing complex palliative care to children and young people with serious, life-limiting illnesses. Neither could they have imagined that some children could live for many years, supported at home by their families 24 hours a day, due in part to advanced medical technologies and practices.

But this is the reality for thousands of children and families, who, day after day, rely on the crucial care and support provided by NHS nurses, consultants, therapists, pharmacists, support workers and many others, in hospitals, at home and in children’s hospices. Away from the front line, they are supported by commissioners, policy professionals and administrators, all working tirelessly to try to ensure children receive the care they should expect.

I pay tribute to them all.

The principle of healthcare free at the point of use remains a powerful one and ensures that children and families with even the most complex needs receive care regardless of their financial means. The UK Government and NHS England (NHSE) have made some welcome progress in recent years: thanks to the the Health and Care Act 2022, there is a legal duty on integrated care boards (ICBs, the local NHS bodies that plan and fund our healthcare) to commission palliative care as they consider appropriate.

We also now have a number of clear NHS policies which provide an imperative for providing palliative care to seriously ill children and their families.

That more children and young people are living longer with these conditions is a testament to the success of the NHS and wider innovation in health and care. Better diagnostics, treatment and technology have all contributed to the number of children with life-limiting illness trebling in the last 20 years. But if the NHS model is to truly work for all in the future, ministers and NHS leaders need to act urgently.

Urgent action required

Worryingly, the extent to which seriously ill children and their families in England can access palliative care services which achieve the standards set out by the National Institute for Health and Care Excellence (NICE) depends on where they live. I am particularly concerned about children and families’ access to end of life care at home, 24 hours a day, seven days a week, provided by professionals who have access to specialist advice.

NHS community children’s nurses (CCNs) provide the bedrock of children’s palliative care, but we know we have too few of them. If safe staffing levels recommended by the Royal College of Nursing (RCN) were being adhered to, 5,500 CCNs would be working in England. Yet there were only 843 employed by the NHS in England in March 2023.

There are also too few specialist paediatric consultants, allied professionals and other care staff with the skills and experience to provide palliative care to children and young people.

The long-term NHS Long Term Workforce Plan, published by NHSE on 30 June, includes important initiatives to increase our health workforce. The 27% expansion in training places by 2028/29, the doubling of the number of medical school places and the 10,500 increase in training places for nursing associates by 2031/32 are all welcome.

I am concerned, however, that the plan says very little about the needs of disabled children or those with long-term conditions – let alone those who need palliative care. NHSE states that it will look at extending dual registration courses in children and young people and learning disability nursing. But it has assessed that there is currently a sufficient number of training places to meet demand for children’s nursing.

Together for Short Lives has identified a £2.3 million annual funding gap in children’s palliative care education and training, which must be addressed.

I am also concerned that the workforce plan only focusses on people employed by the NHS – despite the fact that voluntary sector providers, including children’s hospices, rely on the same sources for the professionals they need to run their lifeline services. In 2022, the average vacancy rate for children’s hospice care roles equivalent to Agenda for Change bands 5-9 inclusive was over 18%, compared to 12% in 2019.

It makes no sense to exclude voluntary sector providers from workforce modelling when they are integral parts of our health system.

There are also serious challenges in NHS funding for children’s palliative care. Together for Short Lives has identified a £300 million gap which the UK Government must fill if children are to receive palliative care that meets NICE standards.

We estimate that, in England, children’s hospices’ charitable expenditure was £140 million in 2022/23. Nearly 70% of that was funded from charitable sources, with the remaining 30% coming from patchy and unsustainable NHS and local authority funding. That is why Together for Short Lives is campaigning to save the £25 million NHS Children’s Hospice Grant, for NHSE to distribute it centrally as it does now and for officials to increase it annually in line with inflation.

In the longer-term, ministers should hold ICBs to much greater account to make sure they fulfil their palliative care duty, so that children’s hospice and palliative care services are funded equitably for the long-term.

The long-term future of the NHS is inextricably bound up in the future of social care which is critical in supporting children and families to remain at home and out of hospital. The £573 million annual local authority funding gap facing social care for disabled children means that too many families of children and young people with life-limiting conditions are not receiving the lifeline short breaks and practical support they need. Without it, many are at breaking point. Until we have a long term, sustainable plan for social care it is difficult to see the NHS having capacity to meet the challenge of an ageing population.

On its 75th birthday, we should never forget that our NHS has helped ensure that more children with life-limiting and life-limiting conditions are living longer lives, bringing more joy and more precious time for families to spend together. But access to the palliative care that provides families with the support they need to care for their children is patchy and unsustainable. Ministers must act now to ensure an equitable service to all, consistent with original ethos of the NHS.

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