National Vision for Children’s Palliative Care
Together for Short Lives is developing a UK-wide National Vision for Children’s Palliative Care to establish a shared direction for the sector over the next ten years.
The Vision Project will bring together lived experience, professional expertise, service insight and the existing evidence base to identify:
- what children and families should be able to expect
- the most important changes needed across services and systems
- where greater consistency is required and where variation is appropriate
- and the priorities for action over the next decade
The Vision Project is intended to complement, rather than duplicate, existing national policy and service frameworks, and to provide a shared direction across the organisations and systems involved in supporting children with palliative care needs and their families.
How your contribution will be used
Your responses will be considered alongside the existing evidence base and engagement with families and young people across the UK.
Together, this will help inform the draft National Vision and identify the issues that require deeper exploration through professional roundtables, workshops and targeted discussions.
The final Vision Report will set out a shared direction for the sector, priorities for action, and the areas where change is needed across services, systems and national policy. We will share the findings from this engagement and explain how they have shaped the final Vision Report.
Who we want to hear from
We want to hear from professionals both within and beyond specialist children’s palliative care.
This includes those working in general and subspecialty paediatrics, neonatal and maternity care, community and primary care, social care, education, adult and transition services, commissioning, research, hospices, voluntary organisations, policy and other areas that influence the care and support children and families receive.
You do not need to work in a specialist palliative care service to contribute.
What we are asking you
There is already a substantial evidence base describing many of the challenges facing children’s palliative care, including academic research, policy and service evidence, grey literature and evidence submitted through wider national work.
This survey is not intended to repeat that evidence or audit individual services.
Instead, we are asking you to draw on your professional experience and expertise to help us understand:
- where the existing evidence may be incomplete, misunderstood or oversimplified
- which underlying issues most need to be addressed
- the important decisions the sector still needs to work through
- approaches, models and ways of working that we should learn from
- and what needs to change over the next ten years
What we mean by children’s palliative care
For this work, children’s palliative care includes babies, children and young people with:
- life-threatening conditions where treatment may be successful
- progressive life-shortening conditions
- severe medical complexity or fragility where there is a significant risk of deterioration or early death
Palliative care can begin before birth or at diagnosis or recognition, run alongside active treatment, and continue through periods of stability, deterioration, end-of-life care and bereavement. It encompasses physical, emotional, social and spiritual needs, with a focus on quality of life for the child and support for the whole family.
Before you start
The survey should take around 10-15 minutes to complete.
It is being run by Kaleidoscope Health and Care on behalf of Together for Short Lives. All survey data will be anonymised before analysis, stored securely by Kaleidoscope Health and Care, and destroyed within four months of the project ending. Your answers will not be linked to information that could identify you.
For further information, please contact Ally Osterberg at ally@kscopehealth.org.uk.
Please complete our survey by 11:59 PM on Monday, 2nd November 2026