Launch of the NSW Paediatric Palliative Care Programme Website

Minister for Health, Hon, Jillian Skinner, launched a new website that will strengthen paediatric palliative care in NSW by supporting families and health providers in their local community. The website will provide a central point to access information about palliative care.

Families of children with a life-limiting illness will have better support no matter where they live in NSW. The new NSW Paediatic Palliative Care Programme  website provides a broad range of specialised information, including on bereavement. There is education available for hospital and community based health professionals aiming to improve knowledge and care for children and their families receiving palliative care.

The website development has been a collaborative state-wide approach to develop shared resources supported by the NSW Paediatric Palliative Care Programme. The NSW Paediatric Palliative Care Programme was established in 2014 and represents the three specialist palliative care services in NSW -The Children’s Hospital at Westmead, Sydney Children’s Hospital, Randwick and John Hunter Children’s Hospital, Newcastle. 

The programme focuses on improving family centred care and strengthening partnerships within specialist palliative care services and between specialist paediatric palliative care and primary care providers so that families are supported through the course of the illness and after the death of their child with appropriate, high quality, co-ordinated palliative care. A broad multidisciplinary approach includes the family and makes use of available community resources. Palliative care can be provided in health care facilities, in community health settings and in children’s homes.

The website is an important tool providing access to information.

Photo:  Dave and Liz, parents of Charlie aged 6, who recieves palliative care, They are pictured here with 8 year old Ally and baby Ethan and Hon Gillian Skinner, Minister for Health.

Charlie has a progressive and complex metabolic illness and needs close and constant care by his family.The main role of palliative care has been to provide symptom management, physiotherapy, occupational therapy and psychosocial support for Charlie, his parents, sibling and grandparents.