Kidney transplantation for First Nations Australians: from ‘These sorts of people don’t do very well’ to ‘Hunting Transplants’ and ‘Return to Country’

Patient precentors Peter Henwood, Neil Wilkshire and
David Croker from Purple House in the Northern Territory
gave first hand accounts of the education process. Video

by Dr Angela Burge, CCS GEDI committee

On Fri 8 July, Professor Paul Lawton shared his valuable insights as part of the NAIDOC week Central Clinical School Seminar Series. We were fortunate that he was able to be joined by a First Nation Peoples panel, with extra special thanks to Peter Henwood, David Croker and Neil Wilkshire from Purple House direct from the Northern Territory (NT), who provided a firsthand perspective on the challenges and opportunities that the health system faces in providing adequate care to the huge number of Australians affected by kidney disease. See CCS GEDI web page for video.

Importantly, the significant lack of parity between renal transplants in indigenous renal patients, dramatically reducing their survival rates in the NT, was highlighted as a critical national healthcare issues that needs to be immediately addressed.

Prof Lawton presented confronting statements and devastating statistics that demonstrated the systemic and long-standing racial bias that has failed to provide Indigenous Australians with the same health outcomes as their non-Indigenous counterparts. But what created the most impact to those in the audience, setting this NAIDOC week presentation apart from other research seminars, was hearing first hand from First Nations Peoples that had been patients and had now become passionate advocates and providers of cultural and community support in Darwin. Peter, David and Neil had some wisdom to share on some of these issues. 

‘Everyone knows someone on dialysis’

The sheer magnitude of the disease burden is difficult to comprehend. Multiple generations and branches of families continue to be affected, meaning that communities are all too familiar with friends and family members having to relocate in order to access treatment, removed from their support networks. But as Paul indicated, although everyone knows someone on dialysis, not enough know someone who has had a kidney transplant, a systemic failure that needs to be addressed, and one The Purple House are doing through their advocacy and community discussions in the top end.

‘You just have a yarn’

This wonderful summary belies the complexities of discussing treatment options in the face of misinformation and strongly held cultural beliefs in accessible locations such as shopping centres and on the street. ‘Wherever people feel comfortable’ in many cases is not a health care professional’s office. As the Purple House precentors said, they have a lived experience and the cultural background which can support and educate indigenous renal patients that doctors like Paul Lawton himself, can’t provide.

Prof Lawton and his preceptor colleagues exemplify the 2022 NAIDOC theme of ‘Get up, stand up, show up’ and it was a privilege to hear about their experiences. It also highlighted the need for healthcare providers and researchers to consult with their consumers to help identify the barriers and facilitators for access to evidence-based care and design delivery models alongside the people that use them. 

Purple House exemplifies the power that consumers and advocates with lived experiences have to support patients. It offers a range of support services to Aboriginal individuals, families and communities including 18 remote dialysis clinics enabling people to get back to their country and family, respite while dialysing in Alice Springs or Darwin, and non-residential aged care services to clients in Alice Springs, Yuendumu and Mt Liebig. It also provides critical education to people who are new to dialysis as well as support and advice to other healthcare services about provision of culturally safe care. 

For more information about the work of Purple House, please visit https://www.purplehouse.org.au/

Please find the link to the recording here https://www.monash.edu/medicine/ccs/equity-diversity-inclusion