Best of 2013: Remote Australia's renal refugees

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Renal UnitKiwirrkurra is 700km of bad roads west of Alice Springs. I have been visiting the community during the last 12 months, as part of my work with a leading social services organisation. Its senior community members talk about the need to show the young men how to behave with their partners and families, and how to put their community first; how older men need to take these younger men out to country, sit down with them and share this hard fought wisdom. 

Old people on remote communities are the glue that keeps them strong. They negotiate cultural and contemporary life in these places. When they pass away, the community suffers a tangible loss. The community becomes more chaotic. The emotional wellbeing of the whole community is destabilised.

Kiwirrkurra has lost a lot of its old people to renal failure either by death or distance. Renal failure, too, forces many women and men from their important roles. Many choose not to make the journey to Alice Springs for dialysis, seeing life away from country and family to be a fate worse than death.

Often people with renal failure don't come to town alone; many family members accompany them. This sense of family has both positives and negatives. The tight-knit family will add homelessness to its woes in overcrowded accommodation in Alice Springs. However they feel it is better to suffer together than in isolation.

Life on dialysis is tough. You are tied to the machine three days a week for five hours at a time. You feel tired and sick. The machine is an assault on your body, trying to do in a few hours what healthy kidneys do all the time.

These conversations have become more urgent recently because more and more older people are being told they have to go to Alice Springs to be put on the machine.

This is one of the ways the system fails these people. The Mandarins in governments of all colours calculate the cost of dialysis in term of cost to their individual departments, not across government. In Central Australia the cost of one dialysis patient coming to town is multiplied by the added burden to housing infrastructure in regional centres, increased health costs for family members accompanying the patients, increased law and order issues resulting from overcrowding and moving people from their traditional land.

Really they are issues that are faced by any population forced to become refugees. These people are refugees as they are essentially forcibly removed from their land to either stay alive or maintain family bonds and look after the person with renal failure. Politicians seem unwilling or lacking in courage to see these issues more broadly than their department or personal career ascendances, failing both the individual and broader Australian community.

I have been with many visitors to the 'Purple House' in Alice Spring impressed by the great work they do there. My partner has been the CEO there for a decade and in that time I have got to know many exceptionally strong Pintupi people fighting to get there people back to country. An Aboriginal community controlled health service, they began with an auction of paintings at the Art Gallery of NSW 13 years ago. They raised over $1 million.

Their aim was to improve life for dialysis patients and to return people home to participate in community life. Their name, Western Desert Nganampa Walytja Palyantjaku Tjutaku — 'Keeping all our families well' — recognises that if people are forced to leave their communities to access dialysis treatment, not only are they sick and homesick, but their communities are lessened too.

They deliver dialysis in Alice and in remote communities, currently Kintore, Lajamanu, Hermannsburg and Yuendumu. They are working hard, with little government support, to establish dialysis in Kiwirrkurra and Warburton. They take a holistic view of health and community. This is at odds with the corporate business of health care provision. But this is an issue of social justice not only for the people with failing kidneys but also for the communities they leave behind.

Jesuit Social Services are in this space also, working with the Atyenhenge Atherre Aboriginal Corporation in Santa Teresa and Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation to achieve nurse assisted dialysis in Santa Teresa. This has been promised twice now by government, but with the recent change in government, service agreements are yet to be seen.

Another exciting capacity building-project for both Jesuit Social Services and Western Desert Nganampa Walytja Palyantjaku Tjutaku is the development of a consumer group giving people in the territory on dialysis a voice so they can advocate for themselves.

Our society grapples with significant moral issues regarding refugees and climate change in the mainstream media on a daily basis. I see Aboriginal peoples access to country in a similar way. Ceremony is often connected to geographical locations and this ceremony is vital to the passing down of knowledge to future generations. It is a moral question for all Australians how we value the beliefs and customs of First Australians.

Are they worth being inconvenienced for? Do we value this culture highly enough? Do we possess enough courage to make a stand in solidarity with Aboriginal people, valuing their connection with land and their right to live in ways consistent with their beliefs?


John Adams headshotJohn Adams is program development manager at Jesuit Social Services, Alice Springs. This article was originally published on 8 October 2013.

Renal Unit image by Shutterstock.

Topic tags: John Adams, Jesuit Social Services, Alice Springs, dialysis

 

 

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John is spot on. He and his partner are legends in the Centre and deservedly so. I have an article written on Indigenous ear health you might be interested in. www.malpa.org.au
Don Palmer | 15 January 2014


Dialysis and transplant treatment for renal failure are not always the best option for the elderly. I have observed the last horrible 10 years of life of a patient, with renal failure, who was provided with all the best care that our medical system can provide. This included over 3 years on dialysis, a kidney transplant and numerous returns to hospital to deal with emergencies. These finally included a 10 hour cancer operation and then radio therapy, during which she died. It took 3 years to discover the rampant cancer. This patient was not given any options. After this experience it seems to me elderly patients should be given a choice. To my surprise, when I put this idea to a renal specialist, he agreed. He told me after discussing the options with one patient who decided not to receive any radical treatment, he died after 5 years. But during that time he never once said he regretted the decision not to undertake any major medical treatment for his renal failure!
Gerard Leahy | 15 January 2014


How much does a dialysis machine cost? How can a small social justice group in a parish in Sydney help?
Toni Byrne | 16 January 2014


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