A Child’s 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.

A Child’s Palliative Care Journey is a suite of documents, which aims to support professionals caring for babies, children and young people with life limiting or life threatening condition. It contains a range of practical help to enable the best of care to be delivered. The suite of documents covers all ages from newborn 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.

A Child’s Palliative Care Journey 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 shown below.

Starting Out

Sensitive, open and honest delivery of child and family focused services

On the Road

Multiagency assessment of patients 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