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Building a National Vision for Children’s Palliative Care

Shaping the future together

Every child deserves many moments of happiness with the people they love. But children’s palliative care across the UK is at a crossroads. More babies, children and young people with serious illnesses are living longer and with increasingly complex needs. Yet access to support remains inconsistent, inequitable and financially fragile. Together, we have an opportunity to shape a better future.

Tell us what really matters for the future of children’s palliative care

We want to hear from families, professionals, services, charities, academics and policymakers across the UK.

Complete our survey by 2 November 2026 and tell us what matters most for the future of children’s palliative care.

Why are we developing a new vision?

Children’s palliative care has changed significantly in recent years.

More children are living longer with complex conditions and many families rely on support from multiple services across health, social care, education and the voluntary sector. At the same time, services are facing growing demand, workforce pressures and financial challenges.

While excellent care exists across the UK, access remains unequal. Too often, the support a child and family receives depends on where they live rather than what they need.

This project is an opportunity for our sector to come together and answer a fundamental question:

What should excellent children’s palliative care look like over the next decade, and what do we need to do together to achieve it?

Together for Short Lives is bringing families, professionals, services, charities, academics and policymakers together to create a shared vision for children’s palliative care over the next 10 years.

The vision will help create a shared case for change, strengthen the sector’s collective voice and set out practical recommendations for services, charities, funders and policymakers.

We want to hear from:

  • Families of babies, children and young people with serious illnesses
  • Children and young people
  • Children’s hospices
  • NHS services and professionals
  • Social care professionals
  • Educators and academics
  • Charities and partner organisations
  • Commissioners and policymakers
  • Local and regional professional networks

Whether you bring lived experience, professional expertise, evidence or policy insight, your perspective matters.

Share the consultation

Please help us reach as many people as possible by sharing the survey with:

  • Families
  • Colleagues
  • Professional networks
  • Partner organisations
  • Local services and commissioners

The more voices we hear, the stronger the vision will be.

Hayley, Clinical team manager, at Naomi House hospice

Take part in our survey for professionals
Image of a mum, daughter, and hospice professional sitting together on a sofa

Take part in our survey for families
A hospice professional plays with a child in the hydrotherapy pool at Naomi House Hospice

Frequently asked questions

Frequently asked questions

What is the National Vision for Children's Palliative Care?

The National Vision for Children’s Palliative Care is a UK-wide project to define what excellent palliative care should look like for babies, children, young people and families over the next decade.

Why is a new vision needed?

More children are living longer with increasingly complex needs, while support remains inconsistent and services face growing pressures. The vision will help the sector develop a shared ambition for the future and identify the changes needed to achieve it.

What are the timescales for delivery?

  • September and October 2026: What really matters? Consultation and engagement.
  • November 2026: Analysis and Vision Summit 1. Reviewing what we’ve heard and identifying the priorities that matter most.
  • December 2026 to January 2027: Developing the draft vision – turning consultation findings into a draft vision and recommendations.
  • January to February 2027: Consultation on the draft vision, including testing and refining the vision with families, professionals and partners.
  • March 2027: Publication of the vision – Launching the National Vision for Children’s Palliative Care.

How does this relate to the Modern Service Framework and other policy developments?

The vision is designed to complement, not duplicate, existing policy developments across the UK. It will take a broader, sector-led view of what excellent children’s palliative care should look like and how organisations can work together to make it a reality.

Will the vision apply across the whole UK?

Yes. The project will draw on experience from England, Northern Ireland, Scotland and Wales while recognising that health and care systems differ across the four nations.

How will families be involved?

Families are central to this work. Their experiences will help shape the vision through surveys, discussions, workshops and consultation activities.

Who is deciding what the vision includes?

The content of the National Vision for Children’s Palliative Care is being developed and agreed by a dedicated steering group, convened by Together for Short Lives and facilitated by Kaleidoscope Health and Care. The steering group acts as the project’s decision-making body, shaping the vision’s content, priorities and overall direction.

The group includes representatives from across the children’s palliative care sector, including all four UK nations, children’s hospices, Hospice UK, clinical, academic and social care experts, professional bodies, allied health professionals, psychologists, and family and young people’s voices.

The steering group works alongside a wider engagement programme that gathers feedback and ideas from across the sector. While the engagement programme ensures a broad range of voices are heard, the steering group is responsible for considering that input and making decisions about what is included in the final vision.

Decisions will be made by consensus wherever possible. The group will continue its work until the vision is launched in early 2027.

What difference will the vision make?

The vision will provide a shared blueprint for the future of children’s palliative care, supporting advocacy, service improvement, policy development and partnership working across the UK.

Stay involved

This is the start of a conversation about the future of children’s palliative care. We’ll share updates, emerging findings and further opportunities to get involved throughout the project.

If you want to know more, or have any questions, please email info@togetherforshortlives.org.uk