Children’s palliative care is an active and total approach to care for children with life-limiting or life-threatening conditions that embraces physical, emotional, social and spiritual support from the point of diagnosis, throughout a child’s life, their death and beyond for the wider family.
It can include the management of distressing symptoms, provision of respite care, emotional and wider family support, and care at the end of life and bereavement support. And this spread of disciplines is necessarily delivered by a range of services and teams, both within the NHS and in the voluntary sector.
This definition of children’s palliative care (CPC) has informed both the work we do at Together for Short Lives and the development of the wider sector nationally and internationally. And at its heart is the idea of CPC being for children with ‘life-limiting or life-threatening’ conditions.
But how specifically do you define a life limiting or life threatening condition? And does every child with such a diagnosis actively need palliative care at any given time? What about babies and children without a definitive diagnosis?
These aren’t academic questions: how we answer them can have a direct impact on the CPC services that government agencies and health commissioners should be required to plan and fund. And answering them inaccurately or unclearly can ultimately lead both to services not being available to children when they should be, or some children not being able to access the services that do exist.
Which is why this summer Together for Short Lives has been working closely with the wider CPC sector to review and update our current understanding of how we can identify which children need palliative care.
Where we are
In 1997 the Association for Children’s Palliative Care (ACT) – one of the charities that later merged to become Together for Short Lives – and the Royal College of Paediatrics and Child Health (RCPCH) jointly published the first system to categorise life-limiting and threatening conditions in childhood. The categories, developed by a panel of experienced professionals described four archetypes of disease and they have been a key influence in the development of CPC, used by national policy makers, commissioners and professionals to inform mapping exercises, needs evaluations, service commissioning, advocacy and recruitment to research.
While Professor Lorna Fraser’s work has provided data on the prevalence of life-limiting and life-threatening conditions among children, this data doesn’t identify how many of these children need active palliative care at any one time. Some children are surviving longer, often into adulthood. And we know that there is overlap with children with other severe disabilities and complex needs.
At the local level there are now differences emerging between how CPC professionals and services are defining the population of children in their area who need palliative care. For example, many hospices have traditionally used the four 1997 definitions as the basis for their eligibility criteria, but in recent years because of the changes in numbers of children surviving, complexity of care and improved technology many are reviewing their criteria and moving away from accepting children within some of the categories.
Understanding the true demand for CPC services is therefore very challenging, and it also leads to inequities in access across different areas – the result is that too many children and young people are being identified as needing palliative care too late in their disease trajectory, or, in many cases, not at all.
Redefinition
To address some of these issues this summer has seen Together for Short Lives kick off an ambitious 12-month programme to review and update the categories with a series of events around the country. The events have been designed to ensure we fully engage with a diverse range of stakeholders from across the sector. Chaired by Paul Brown, an independent communications and engagement specialist, we’ve aimed to create an environment where all thoughts and opinions can be openly and honestly aired.
So far we have engaged with 91 people at the events, including families and young people, health and social care professionals working in both the voluntary and statutory sectors, policy makers, commissioners and academics.
The contributions so far have been superb, and we have another four events planned over the next nine weeks in Belfast, Manchester, Cardiff and Bristol. We’re also planning an online event for those who can’t attend in person, and we’ll be then looking to synthesize feedback and develop a report with a proposed new framework in March 2024.
This is crucial work for us to help develop better children’s palliative care services and reach the right children at the right time, and we want as many people across the sector as possible to be involved – if you want to find out more or get involved with this important work please get in touch with at definitions@togetherforshortlives.org.uk
Dr Helena Dunbar is Together for Short Lives Director of Service Development and Improvement.
