Advance care planning for children and young people: Information for young people and caregivers

What is advance care planning?

  • Advance care planning is a process where professionals, caregivers and young people work together to discuss, agree, and document priorities for care where there is a possibility that young people may die or experience life-threatening complications
  • Caregivers use the advance care planning process to share their values and wishes to provide the ‘best care’ for their child
  • Some young people will have an Advance Care Plan for many years before they reach the end of their life
  • An Advance Care Plan is always a work in progress. Each time a plan is agreed, it must be accessible to all services that might care for the young person and their family both for routine care and in a crisis. For an example of a document to help organise the care planning process please see the downloads section on the top right of this page
  • All service providers should use it to guide the care they provide
  • The existence of an Advance Care Plan does NOT mean a limitation of treatment
  • Advance Care Plans are communication tools not legal documents
  • The young person and their caregivers can change their minds and revise their Advance Care Plan at any time

The Child and Young Person's Advance Care Plan collaborative has more comprehensive information for caregivers, parents, children and young people

Recommended Resources

Children and Young Person's Advance Care Plan Collaborative

Published 1st January 2025

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Related Services

Support with advance care planning

Advance Care Planning in Ealing Care Homes
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Advance Care Planning in Ealing Care Homes

T. 0300 123 4544

This service is for adults with a terminal illness to provide a Universal Care Plan (UCP) to support patients end of life wishes and preferences.

It is delivered by a Registered Nurse (RN) with comprehensive training and current experience in end of life and palliative care.

These nurses support the GP Team in creating high quality UCPs for all residents in Care Homes within Ealing borough already needing 24-hour care.

Community Team for People with Learning Disabilities Ealing
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Community Team for People with Learning Disabilities Ealing

T. 0300 123 4544

The Ealing Community Team for People with Learning Disabilities provides specialist assessment, support and interventions to people with learning disabilities and their families/carers. The team can help to provide expert support to their patients at life’s end and assist with co-ordination and planning across services including liaison with social care and the voluntary/third sector.

International Children's Palliative Care Network
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International Children's Palliative Care Network

The network is committed to providing information on available resources related to the field of children’s palliative care. 

Marie Curie
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Marie Curie

T. 0800 090 2309

W. https://www.mariecurie.org.uk/

Marie Curie provide support for patients and carers through terminal illness.

Find information and support through the telephone helpline and online chat via their website.

Other services include Marie Curie nurses, Hospice care, helper and companion services.

Young Minds
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Young Minds is a national charity which supports both young people, their parents and loved ones through loss.

Services that support children

District Nurses Night Service Hounslow
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Referrals to the night service can be made Monday to Sunday 5.00pm to 7.00am.

The Association for Paediatric Palliative Medicine (APPM)
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The Association for Paediatric Palliative Medicine (APPM)

W. https://www.appm.org.uk/

The Association for Paediatric Palliative Medicine represents all doctors, nurses and allied health professionals working in the area of Paediatric Palliative Medicine in hospital, hospice and community settings. It seeks to support practice and training for all doctors and other health professionals working in this area of medicine. 

Together for Short Lives
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Together for Short Lives have a helpline and family support hub to provide help and advice for those caring for a child with a serious illness.

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