We want to hear about your experience

Access to high-quality palliative care is critical for people with a life-limiting illness, their families and carers, and is recognised by the World Health Organization as a fundamental human right. It is also an essential element of a well-functioning health system. 

Sharing information about your experience – good or bad – with Palliative Care Australia (PCA) can help us advocate for better palliative care for all Australians with a life-limiting illness, their families and carers. Real stories highlighting the challenges people face in accessing care are critical in our work to improve those systems. 

We’re keen to hear about experiences with different parts of the service system including: 

• specialist palliative care 
• primary care 
• other parts of health care, for example general health care received in a hospital or community setting 
• residential aged care 
• aged care at home 
• disability support (including the National Disability Insurance Scheme)  
• volunteer programs 
• other social and community supports, or  
• anything else you think shaped your experience of care. 

If you would like to share your story with us, please use the form below. 

PCA acknowledges that people’s experiences of palliative and end-of-life care may be challenging or traumatic; sometimes involving serious system failures. While PCA is not able to take action on individual cases, the following organisations may be able to provide you with more information or assistance. 

Concerns or complaints 

• Palliative Care Australia’s state and territory member organisations are the peak bodies for palliative care in each jurisdiction, and may be able to provide localised information or advice.   

• The Australian Health Practitioner Regulation Agency (AHPRA) oversees professional training, standards and conduct of all Australian health professionals, and has information on how to register a concern or complaint. 

• Each Australian state and territory has a dedicated independent body or commissioner responsible for receiving and investigating health complaints. 

• • Australian Capital Territory – Human Rights Commission 

• • New South Wales – Health Care Complaints Commission 

• • Northern Territory – Health and Community Services Complaints Commission 

• • Queensland – Office of the Health Ombudsman 

• • South Australia –Health and Community Services Complaints Commissioner 

• • Tasmania – Health Complaints Commission 

• • Victoria – Health Complaints Commission 

• • Western Australia – Health and Disability Services Complaints Office 

• Aged care services 

• • Aged Care Quality and Safety Commission 

• National Disability Insurance Agency 

• • NDIS complaints and feedback  

• • NDIS decision appeals program – for internal and external appeals of NDIS decisions 

• • NDIS Quality and Safeguards Commission – for complaints about providers and workers 

If you are experiencing distress you can contact Lifeline on 13 11 14 or Beyond Blue on 1300 22 4636. If you would like information about mental health support, contact Medicare Mental Health on 1800 595 212 or visit Medicare Mental Health.
 

Where to find more information about palliative care services 

• The palliative care organisation in your state or territory. 

• Your GP or other health professionals can provide information about palliative care services in your area.  

• You can also use the National Palliative Care Service Directory to find palliative care services near you. 

• Ask Izzy provides a list of independent disability advocacy services. 

• The Older Person’s Advocacy Network provides individual advocacy for people using or seeking aged care. 

• Carers Australia provides information for carers.