24/7 Children's and Young People (CYP) Specialist Palliative and End of Life Care (PEoLC) Sussex

This contract is for the provision of specialist palliative care for children in Sussex. The palliative care needs for children encompass a wide range of conditions (e.g. genetic, neurological, cardiac, oncology) who often have complex, evolving care requirements.

This service will provide an active and total approach to care, from the point of diagnosis throughout the child's life, death and beyond. Children and young people approaching the end of life and being cared for at home will have 24-hour access to both children's nursing care and advice from a consultant in paediatric palliative care.

The service will include:

Continuous Clinical Access - provision of 24/7 specialist paediatric consultant advice and nursing support for end-of-life care, ensuring families can access clinical expertise at home, in a hospice, or in a hospital setting at any hour.

Holistic Approach - a "total approach to care" that addresses physical, emotional, social, and spiritual needs from the point of diagnosis through bereavement.

Service Deliverables:

o Specialist Assessment - leading assessments to ensure care is provided at the right time and location in the child's journey.

o Symptom Management - providing 24/7 symptom management advice and developing formal plans to manage distressing symptoms.

o Anticipatory Care Planning (ACP) - facilitating clear plans that outline the family's wishes and expected interventions.