CYP: For Professionals

Children’s and Young People Palliative and End of Life Care

Children and young people (CYP) represent a third of our country. Improving access to the right services at the right time is a key priority for the North West CYP Palliative Care Networks for children and young people aged 0-25 and those important to them.

The North West Palliative and End of Life Care (PEoLC) Network covers Cheshire & Merseyside, Lancs & South Cumbria and Greater Manchester and works with children’s palliative care services. The Children’s and Young Peoples (CYP) palliative care network has three zonal steering groups who meet quarterly.

The CYP network works closely with hospice/hospital/community teams, commissioners and the ICB to improve quality and access to palliative care for children, young people and their families/carers and those important to them.

Our programme of work has been developed in line with the CYP National Service Specification, Ambitions for PEoLC and NICE Guidance.

Improving Access

Establish a baseline of specialist palliative care services, including access to advice 24/7.

Improving Quality

A programme of education and training to support the workforce to have the skill, knowledge and confidence to deliver high quality care.

Improving Sustainability

Support sustainable funding of PEoLC across the North West based on up-to-date information collected through a Point Prevalence study and workforce survey.

Advance Care Planning

Advance care planning is the process of discussing the wishes, preferences and care needs with children, young people and their families/carers, documenting those discussions and sharing that information with the health professionals involved in the individual’s care.   To support healthcare professionals, we offer Basic Awareness Training on CYP ACP.  This training is free to attend. Email for more information.

CYP Advance Care Plan Collaborative – main page
CYP Advance Care Plan with ReSPECT Version 5 of the CYPACP is now available on the website

You will find a choice of four documents:

CYPACP Version 5 – Standard (all ages) – generic without ReSPECT

CYPACP Version 5 – Standard (all ages) – generic with ReSPECT

CYPACP Version 5 – Antenatal generic without ReSPECT

CYPACP Version 5 – Antenatal generic with ReSPECT

There are some basic guidelines available on how to complete an advance care plan with some tips on completing the form, which is a Word document.

Note: The Word document is flexible to use, but some of the formatting may try to change as you complete the document, particularly when pasting in from other documents.  If you have any issues with the document, please contact 

Advanced Communication Skills Training

Advanced Communication Skills Training (ACST) is a training programme that helps healthcare professionals hold difficult conversations with children, young people and their families/carers.  In the North West there are a variety of offers for ACST. Email for more information.

Association for Paediatric Palliative Medicine (APPM) Clinical Guidelines (1st edition) 2023

The APPM clinical guidelines offer evidence-based, peer-reviewed clinical guidance to clinicians working with children and their families to support symptom management, palliative and end of life care. The first three on seizures, agitation and GI Dystonia, are now  available on the APPM website.  These guidelines were developed with the support of Cochrane Response (funded by NHS England) and the APPM Clinical Guidelines group.

Basic Symptom Control in Paediatric Palliative Care – new edition May 2022

The basic symptom control manual now in its 10th edition is now available to download.

National CYP Service Specification

This document provides a children and young people service model for delivering specialist level palliative care (SLPC) services from identification of need through to end of life.

The Palliative Care Journey

When a child/baby or young person is diagnosed with a life limiting or life-threatening condition a journey begins. Throughout this journey babies, children, young people and families will need information and support.

This website is a suite of documents, which aims to support professionals caring for babies, children and young people with life limiting or life-threatening condition and contains a range of practical help to enable the best of care to be delivered. It covers all ages from new-born to young adult life and is based on symptoms and needs rather than any particular diagnoses. Documents include forms, checklists and information sheets covering different subjects that may be of use. These documents can be photocopied and shared. This is a framework which requires each setting to add their own individualised documentation specific to the practice area. It should enable current best practice to be available to babies, children, young people, and their families wherever they may be. It can be used in any setting where it could be of value and can be used by any of the many disciplines that is vital for the successful care of these babies, children and their families. Each section reflects the information needs one may have throughout the babies, child or young person’s journey.

The documents are categorised according to the stages of the journey:

Starting Out – Sensitive, open and honest delivery of child and family focused services

On the Road – Multiagency assessment of patient’s family and needs

Getting there together – Patient and family support in their choices and goals for quality end of life

Finding a new path – Access to appropriate support and bereavement services

More information can be found here.

National Child Mortality Database (NCMD)

Website: NCMD | The National Child Mortality Database . There is a really useful section for professionals; sign up to receive updates.

Pan-Lancashire Child Death Overview Panel (CDOP)

Website:  Child Death Overview Panel – Children’s Safeguarding Assurance Partnership (

North West Paediatric Operational Delivery Network

North West Paediatric Critical Care, Surgery in Children & Long Term Ventilation Operational Delivery Network

  • Meet the Operational Delivery Network (ODN) team
  • View a map of stakeholders across the region
  • Access:
    • Guidelines & documents
    • Patient information leaflets and charities
    • ODN news, events and meetings
    • Links to partner websites