NSW Paediatric Palliative Care Programme

There are three specialist paediatric palliative care (PPC) hospital-based services in NSW and one hospice. The Children’s Hospital at Westmead (CHW); Sydney Children’s Hospital (SCH), Randwick; John Hunter Children’s Hospital (JHCH), Newcastle; and Bear Cottage Children’s Hospice, Manly. Together these services are known as the NSW Paediatric Palliative Care Programme (NSW PPC Programme) and aim to provide a statewide approach to supporting the delivery of care to children with a life limiting illness and their families.

The NSW PPC Programme is a statewide, consultative and interdisciplinary palliative care model for patients aged 0-18 years (in addition to accepting antenatal referrals).

Statewide service delivered through three consultative hospital teams and one hospice

Multidisciplinary teams

Consultative teams encompassing inpatient, outpatient and home visiting models

After hours patient and carer phone support

Delivering paediatric palliative care to support patients, carers and clinicians

The paediatric specialist services representing the NSW PPC Programme support palliative care service provision to patients and families across the inpatient, outpatient and community setting throughout the illness of the child.  Inpatient respite is available at Bear Cottage, Manly. Each consultative service operates as an interdisciplinary model to coordinate and link patient care with local hospital and community health services, ensuring families are well supported at home or in a  location as close to home as possible. Home visits occur where possible. Virtual care is also used to provide outreach support to patients, families and their locally based  health providers.

The members of the NSW PPC Programme provide:

• outreach support for patients and families across the hospital and community setting in all metropolitan, regional and rural NSW locations – including culturally appropriate support for Aboriginal and Torres Strait Islander patients and families
• guidance, support and education to local hospital and community health staff who are involved in patient and family care across NSW
• patient and family consults via virtual care options which can include other involved health care professionals
• coordinating referrals to community health care professionals when needed to support patient and family care at home
• medical after hours advice to NSW healthcare professionals (for admitted and non-admitted patients)
• inpatient care at Bear Cottage for respite, symptom management or end of life care.

Making a difference with a statewide PPC model

• Improved integration and collaboration across all health services involved in a child and family's care
• 'Pop-up' interventions across metropolitan, rural and remote locations provide education and training tailored to the individualised needs of a child as their condition changes throughout an illness
• Access to a multidisciplinary team delivering holistic, interdisciplinary care
• Access to bereavement support
• Access to Aboriginal Health Practitioner support
• Enhanced service delivery model
• Data and quality improvements monitored regularly at a state level
• Statewide working groups established to progress key initiatives.

More about the NSW PPC Programme

• The NSW PPC Programme website has a broad range of information, resources and support for health professionals and families.
• Each of the services involved in the NSW PPC Programme are keen to develop partnerships with healthcare professionals across NSW to optimise care for children with life limiting illnesses.