National Vision for Children’s Palliative Care
At Together for Short Lives, we believe every child with a serious illness should have the best possible quality of life, with as many moments of happiness as possible with the people they love.
We are developing a UK-wide National Vision for Children’s Palliative Care to set out what children and families should be able to expect, what needs to change, and the priorities for improving care and support over the next ten years.
Families’ experiences are central to this work. We want to understand what has made the biggest difference to your child and family, where support has been difficult or missing, and what you think needs to change for families in the future.
Who this survey is for
Children’s palliative care is care and support for babies, children and young people who:
- have a life-threatening condition where treatment may or may not be successful
- have a progressive condition that is likely to shorten their life
- have severe medical complexity, where their health can change or deteriorate significantly
Children’s palliative care is not only care at the end of life. It can begin before birth or when a serious condition or need is first recognised and can be provided alongside treatment throughout a child’s life. It can include support with symptoms and medical care, emotional and practical support, short breaks, education and everyday life, planning ahead, and support for the whole family.
You may never have heard the care or support your family receives described as ‘palliative care’. If this description reflects your child’s needs or your family’s experience, we would like to hear from you.
How your response will be used
What you tell us will be considered alongside existing evidence and further discussions with families, young people and professionals across the UK.
Together, this will help us develop the National Vision by identifying:
- what children and families should be able to expect
- the changes that matter most
- and the priorities for action over the next ten years
We will share the findings from this engagement and explain how they have shaped the final Vision.
Survey responses will be anonymised. Findings may be included in the National Vision and related reports, but nothing will be published that identifies you, your child or family.
Before you start
The survey takes around 10 minutes.
Some questions ask about experiences that may have been difficult. You are in control of what you choose to share.
- Every question is optional. You can skip a question or stop at any time.
- There are no right or wrong answers. A few words are as welcome as a longer response.
- Taking part, or choosing not to, will not affect any care or support your family receives.
- Your responses will be anonymised before they are analysed.
The survey 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 the information that could identify you.
For further information, please contact Ally Osterberg at ally@kscopehealth.org.uk.
If anything raised by the survey feels difficult or you would like support afterwards, you can contact the Together for Short Lives helpline on 0808 8088 100 or helpline@togetherforshortlives.org.uk.
Please complete our survey by 11:59 PM on Monday, 2nd November 2026