Development and alignment

Rationale for the framework

In response, practitioners requested a move away from rigid diagnostic lists toward a model that focuses on holistic recognition and clinical risk.

A core driver for this update was the philosophy that palliative care is “everyone’s business” and should be an active part of care from the point of recognition, rather than being viewed as a “last resort”. Furthermore, the toolkit seeks to help professionals distinguish between a child’s “complexity of care” and their “eligibility for palliative services”. This ensures that specialist resources are directed to children who truly need expertise while supporting families with stable but complex needs through alternative pathways.

Alignment with national standards

To ensure the toolkit is practical for modern healthcare, it has been meticulously aligned with national UK guidance.

It translates high-level standards from NICE (NG61 and QS160) into actionable clinical behaviours, such as the early use of parallel planning and the formal recording of Advance Care Plans. It also respects the NHS England service specifications by framing specialist palliative care as a tiered response. This clarifies that while all teams should provide core support, specialist teams are triggered when a child’s needs – such as refractory symptoms or complex ethical decisions – exceed what the local team can manage alone.

Development of the framework

The categories and toolkit were co-developed with the support of the Association for Paediatric Palliative Medicine (APPM), drawing on national clinical expertise to ensure the framework is evidence-informed and aligned with current paediatric palliative care practice. This partnership has strengthened the credibility of this work across the sector.

This work would not be possible without all the professionals and families (over 200) who took part in our engagement events, particularly the organisations and professionals listed below who were part of the working groups who helped inform the detail in the framework.

A final thanks to True Colours Trust, who funded the initial engagement events.

Members of the working groups

• Alison Shepherd, Kentown Specialist Palliative Care Nurse, University Hospitals of Morecambe Bay
• Dr Amy Volans, Consultant Clinical Psychologist & Family Therapist, RAaFT Regional Advice and Facilitation Team, East of England Children’s Palliative Care Service and Diana Children’s Community Palliative Care Team, East London NHS Foundation Trust
• Anna Oddy, Children’s Complex and Palliative Care Advanced Practitioner, Manchester
• Dr Ann Goldman, Together for Short Lives Advisory Council
• Association for Paediatric Palliative Medicine (APPM) members
• Belle Wooldridge, Education Programme Lead, Together for Short Lives
• Dr Charlotte Mellor, Consultant in Paediatric Palliative Care, Bristol Royal Hospital for Children
• Dr Christine Mott, Consultant in Paediatric Palliative Medicine, Birmingham Women’s and Children’s NHS Foundation Trust and Acorn’s Hospices and Co-Chair of APPM
•  Dr Clare Fenn, Paediatric Trainee, Rotherham NHS Foundation Trust
• Clare Jones, Nurse Coordinator, Claire House Children’s Hospice
• Dr Ella Aidoo, Consultant in Paediatric Palliative Medicine, Evelina Children’s Hospital
• Francesca Messenger-Jones, Clinical Lead for Community Children’s Nursing South Cumbria,
• Dr Gayathri Subramanian, Consultant Paediatric Intensivist, Royal Manchester Children’s Hospital
• Grace Stewart, Head of Children’s Hospice Services, Northern Ireland Children’s Hospice
• Dr Helen Bennett, Director of Care, Alexander Devine Children’s Hospice Service
• Dr Helena Dunbar, CEO, Kentown Support.
• Dr Jo Griffiths, Consultant in Paediatric Palliative Medicine, All Wales managed clinical network & Swansea Bay University Health Board
• Julie Bayliss, Nurse Consultant Paediatric Palliative Care, GOSH
• Katie Horrocks, Kentown Specialist Palliative Care Nurse, North Cumbria Integrated Care NHS Foundation Trust
• Katie Tallowin, Associate Director of Services and Impact, Together for Short Lives
• Dr Kate Renton, Consultant in Specialist Paediatric Palliative Medicine, University Hospital Southampton/ Naomi House Hospice
• Dr Laura Nohavicka, Paediatric Palliative Medicine Consultant, Helen & Douglas House Hospice, Co-Chair of APPM.
• Lesley Fellows, Nurse Consultant, Claire House Children’s Hospice
• Lisa Pullen, Lead Nurse for the South-West Children’s Palliative Care Strategic Clinical Network
• Lis Meates, Director of Service Delivery and Development Forget me Not Hospice
• Dr Maria Cable, End of Life Transition Project Officer
• Dr Naomi Taylor, Consultant in Paediatric Palliative Medicine, Martin House Children’s Hospice
• Pam Mathias, Head of Care Ty Gobaith Children’s Hospice, North Wales
• Professor Lorna Fraser, Professor of Palliative Care and Child Health – Cicely Saunders Institute, King’s College London
• Professor Myra Bluebond-Langner, Professor of Palliative Care for Children and Young People Emeritus, UCL Great Ormond Street Institute of Child Health
• Professor Ulrika Kreicbergs, Louis Dundas Chair in Palliative Care for Children and Young People, Louis Dundas Centre for Children’s Palliative Care, UCL Institute of Child Health
• Sadie Thomas-Unsworth, Consultant Clinical Psychologist, University Hospital Bristol and Weston Foundation Trust
•  Tara Kerr-Elliott, Children’s Palliative Care Nurse Specialist/ Educator, Great Ormond Street

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