PCA has established the National Register of Palliative Care Consumers and Carers to facilitate opportunities for palliative care consumers and carers to engage in health care policy, research, service delivery, and improvements with agencies.
The National Register is a list of interested and available consumers and carers with lived experience of palliative care across Australia, who wish to give an independent voice to those living with a life-limiting illness, people who are receiving palliative care, their family, carers and for the volunteer workforce who supports them.
In palliative care policy contexts consumer and carer involvement has been shown to:
- Demystify palliative care
- Increase public awareness of, and support for, palliative care services
- Assist palliative care services to better understand and respond to the needs of consumers, especially under-served populations.
What is the National Register?
The National Register is a group of people with a lived experience of palliative care from across Australia. Our representatives have a varied range of experiences with palliative care and are able to use their lived experience and communication skills to share their stories and provide input into public policy and service delivery related to palliative care in Australia.
The National Register is designed to foster opportunities for consumer and carer engagement at a national or jurisdictional level in a supported environment. PCA is dedicated to supporting members of the National Register by best practice and has adopted principles of quality consumer and carer participation based on best practice and recommendations in global literature on the subject.