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 shown below.

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