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We must find new ways to navigate the perfect storm

News and comment

There is a perfect storm brewing for children’s palliative care.

We know that the number of children living with life-limiting illnesses is growing and that many children are living longer. We suspect, from what we observe that the clinical and social complexity of many of these children and young people has also grown significantly. More than half of admissions to Paediatric Intensive Care Units are children with life-limiting conditions.

More children. Living longer. More time making memories as a family, more parents sharing priceless moments with their babies; more young people making the transition to adulthood. This is a cause for celebration.

However, this growth in need is taking place in an environment of contracting public resources. Significant reductions in local authority budgets have impacted massively on social care and while NHS resources have increased, it has struggled to keep pace with rising clinical costs of delivering support to this group of children. Despite children’s palliative care now being established as a maturing clinical specialism, there is still significant reliance on the voluntary sector to fund services that families rely on – from the most specialist doctors to crucial family support at home. This has been exacerbated by growing workforce pressures – a system-wide shortage of nurses, doctors and allied health professionals is putting more pressure on a stretched children’s palliative care sector. And this pressure is happening against a backdrop of low public awareness around the role of the sector, taboos around talking about seriously-ill children, and high profile cases where coverage has risked further undermining public understanding around children’s palliative care.

This is not to ignore the amazing support on offer to children and families, in hospital, at home and in children’s hospices. Nor is it a suggestion that children’s palliative care is unique in being adversely affected by austerity. But if demand continues to go one way, and resources the other, over the next decade we need to consider if the current model is a realistic and sustainable one.

Looking ahead

The last strategic review of children’s palliative care in England took place twelve years ago. Since then the landscape has fundamentally changed in terms of population, service configuration, commissioning and resources.

Which is why Together for Short Lives plans to look forward 10 years and, drawing on expertise from within and outside the children’s palliative care sector. We want to understand how the needs of children and families are likely to continue to change by 2030 and how prepared children’s palliative care services are to meet this need. We hope that, together, we can identify what needs to change to ensure children and families get the support they need from communities and services which are resilient and sustainable. This might include system wide changes to improve the commissioning of services; new models of children’s palliative care to meet the needs of the most complex children in hospital, children’s hospice and in the community; and national and local government action to better support children and young people who need palliative care

We plan to kick this far reaching review at our UK conference in March. Aptly titled Time for Change – a new vision for children’s palliative care, this two day event in Manchester will bring together those at the leading edge of children’s palliative care. It will explore what the changing policy and practice landscape and means for staff and services, and how we can prepare and adapt our practice, services and workforce to deliver the best care to seriously ill children and families. It will also explore some of the ethical and decision making questions raised by high profile end of life cases and how services can better prepare and support families.

We hope this will be the start of a conversation to identify new ways to navigate the stormy waters. If you are someone with an interest in the care of children with life-limiting illness and can help us shape this vision for 2030, we would love to hear from you.

Andy Fletcher is CEO of Together for Short Lives

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