The Expert Parent Carer Voice is a diverse group of parents who have cared for, or are caring for, a life shortened child with complex health care needs.
We have firsthand experience of, but not limited to:
•Palliative Care for babies, children and young people inc. Hospice Care.
•Complex care planning inc. Advanced Care Planning and End of Life Planning.
•Rare degenerative neurological disorders inc. home, hospital and hospice medical procedures and equipment.
•Profound and Multiple Learning Disabilities.
•SEND Needs within Education settings.
•Bereavement and Trauma.
•Transitioning of complex needs to adult services, inc. Social Care.
•Charity involvement and support.
•Coordination of Multi-Disciplinary Teams.
•Continuing Health Care, commissioning and Personal Health Budgets inc. staff recruitment, retention, PAYE and training.