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

Share

Downloads

Related Services

Child palliative care teams

Amparo support following suicide
Close

This free Specialist Bereavement Service, delivered by Amparo for residents in mid and south Essex, provides emotional and practical support for anyone who has felt the impact of suicide at any time (recent or historical).

The  service is completely confidential and can provide short-term or longer-term support. It is also available to bereaved children (Aged between 4 and 11 with agreed appropriate adult)  and young adults (Age 11 upwards).

Experienced Liaison Workers, aim to make initial contact within 24 hours of a referral being received, offer residents:

  • Support in their homes or wherever is most comfortable to the resident.
  • One to one individual support
  • Help with any media enquiries
  • Practical support when liaising with the Police or Coroners including preparing for and attending inquest
  • Help overcoming feelings of isolation

Please complete the referral form: https://amparo.org.uk/refer/

Bliss
Close

Bliss offers a wide range of free services for the families of premature and sick babies including a video call support service.

Child Bereavement Network
Close

The Childhood Bereavement Network (CBN) is the hub for those working with bereaved children, young people and their families across the UK. Support is provided by the network members.

Child Bereavement UK
Close

Offer a telephone support service for bereaved young people up to age 25, their families/ carers or individuals or families who have lost a child. 

 

Child Death Helpline
Close

Child Death Helpline is operated by a dedicated team of volunteers who are all bereaved parents. The helpline provides support to a parent who has lost a child of any age, under any circumstances, and however recently or long ago, we’re here to help. They also offer support to grandparents, siblings and the extended family, as well as professionals who have been impacted by the death of a child.

Children's Community Nursing Service: Provide CIC
Close

Children's Community Nursing Service: Provide CIC

T. 0300 1310 111

The Children's Community Nursing Service team provides nursing care for children and young people with a health need including palliative care in their own home or the community and includes training and support for families and carers. The primary aim is to prevent hospital admission, attendance and length of hospital stay through supporting a family to care for their child at home or within their local community.

This service covers Mid Essex excluding Halstead.

CRUSE Bereavement care
Close

CRUSE Bereavement care

T. 0808 808 1677

W. http://www.cruse.org.uk/

CRUSE Bereavement care helps children and adults through bereavement with support, information and campaigning.

Farleigh Hospice Yo-Yo Project
Close

Yo-Yo is a community bereavement service for children and young people aged 4 to 18.

We offer a range of support options including:

  • 1 to 1 support
  • Counselling
  • Music, Art and Play Therapy
Grief Encounter
Close

Grief Encounter is a national charity offering a free helpline and online support for children and young people wishing to access bereavement support.

They also offers counselling support in classrooms, online or at their premises in North London. A referral form is available on their website.

International Children's Palliative Care Network
Close

International Children's Palliative Care Network

W. https://icpcn.org/resources/

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

Little Havens Hospice
Close

Little Havens provides specialist care and support for babies, children and young people requiring specialist in-patient care for symptom management, respite and end of life care.

Lullaby Trust
Close

The Lullaby Trust raises awareness of sudden infant death syndrome (SIDS), provides expert advice on safer sleep for babies and offers emotional support for bereaved families.

Rainbow Trust
Close

Rainbow Trust Children’s Charity supports families who have a child aged 0 to18 years with a life-threatening or terminal illness.

Stillbirth and neonatal death
Close

Stillbirth and neonatal death (Sands) is the leading stillbirth and neonatal death charity in the UK. They ensure that anyone affected by the death of a baby receives the best possible care and support for as long as they need it. 

Sands provides bereavement support services both nationally through its Freephone helpline, mobile app, online community and resources, and locally through a UK-wide network of around 100 regional support groups. 

Sudden Unexplained Death in Childhood Foundation
Close

Sudden Unexplained Death in Childhood Foundation

W. https://sudc.org/

The Foundation is a worldwide organisation, American based, whose purpose is to promote awareness, fund research and serve those affected by sudden unexplained death of children.

The Association for Paediatric Palliative Medicine (APPM)
Close

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. 

The Compassionate Friends
Close

The Compassionate Friends (TCF) is a charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other similarly bereaved family members who have suffered the death of a child or children of any age and from any cause.

Get support using the telephone helpline or online support groups.

The Good Grief Trust
Close

The Good Grief Trust helps all those affected by grief in the UK and brings bereavement services together, to ensure that everyone receives the tailored support they need to move forward with their lives.

The trust is run by the bereaved, for the bereaved and aim to normalise grief and raise awareness of the impact of grief on a national platform. 

 

Together for Short Lives
Close

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.

Winston's Wish
Close

Winston's Wish is a national charity offering a free helpline and online support for children and young people wishing to access bereavement support.

They also provide resources and further training for schools and healthcare professions.

Young lives vs Cancer
Close

Young lives vs Cancer support young people under 25 with cancer, and their families, to get the help they need during their cancer treatment and beyond, including bereaved families living with emotional distress. 

Young Minds
Close

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

Feedback