Engaging with children, families and service providers

ICBs can help to make sure that the palliative and end of life care they commission is responsive to the needs of their population by involving children and young people in the commissioning process, development of strategies and delivery of PEoLC on a recurring basis.

Professionals and organisations providing children and young people’s palliative and end of life care can often provide helpful routes to engaging children, young people and families. Many provider organisations have forums and groups for parents, young people and/or siblings which ICBs could consider using.

ICBs may also wish to consider engaging with local forums of parent-carers and youth healthcare forums.

The Council for Disabled Children provides resources and events to help co-produce services with disabled children and young people.

On page 22 of its report Exploring the Education, Training and Support Needs of Those who Provide Care for Children and Young People With Learning Disabilities and Learning Difficulties, the Council for Disabled Children and Health Education England provide guidance on making use of community resources and building in co-production at all levels which ICBs may wish to take into account.

In its resource What is Co-Production, the National Network of Parent Carer Forums provide guidance on how coproduction can work for families of disabled children.

NHS England has produced this worksheet on coproduction.