Access to dialysis: Anangu speak out

First posted on 26 February 2010 under Kidney Disease.
This article has been updated and archived.
Tags: advocacy & dialysis

Summary

For many years, Anangu have been asking governments to establish dialysis services on the APY Lands.[i] These requests became more urgent in early 2009 when the Northern Territory Government decided it would no longer let people from the APY Lands relocate to Alice Springs for renal dialysis.[ii]

Since November 2009, a number of Anangu have written directly to Members of Parliament and/or the media about this issue. Some of these letters have also highlighted the challenges Anangu face accessing dialysis in places like Adelaide.

Anangu voices

Leonard Burton

Leonard Burton is an Anangu man. He comes from a small homeland near Amata, a community on the APY Lands 20 kilometres south of the Northern Territory border.

In February 2010, Mr Burton wrote to the South Australian Minister for Health (Hon John Hill MP). In the letter, he described some of the difficulties and alienation he experienced after relocating to Adelaide for dialysis:

I am writing because I have a problem with my kidneys. I have had to leave my country and my people to come down to Adelaide because I am on dialysis. There is no dialysis machine in the APY Lands and we cannot go to Alice Springs any more for dialysis. I need help from you as the Minister for Health to help me and my Anangu people have a dialysis machine on the APY Lands.

When we go on dialysis we have to leave the APY Lands. We have to go and be strangers a long way from our own people and our own country. We feel sad being such a long way from our country. Everything is different and we feel like we are losing our culture…

Up in the Lands people respect me. People listen to me. But down here I feel lost. I feel like important things in my life are slipping away. If I was able to be up in [the] Lands and on dialysis it would be different…

Down here it is hard for everything. We don’t know how to live in the city, it is so different. I feel the government workers don’t respect me and keep telling me I’m doing the wrong thing. Instead of getting to know me [it seems] like they just think I’m a problem.

I hope you can support us Anangu as we ask for a dialysis machine on the Lands.[iii]

Click here to download a copy of the full letter (file size: 57KB)

Colin Brown

Colin Brown is an Anangu man from Pukatja. His wife had end-stage renal disease. In November 2009, Mr Brown wrote to the Federal Minister for Indigenous Affairs (Hon Jenny Macklin MP):

My wife … is on dialysis, so we are living in Adelaide, a long way from our home country…

The Alice Springs Hospital says they cannot provide dialysis for people from the APY Lands because they say the APY Lands are in a different State, not the Northern Territory … they say “no” if we are on one side of a line on a map and “yes” if we are on the other side. For us Anangu, our families and our lands cross over the lines that whitefellas have made for the State and Territory borders…

I know quite a few Anangu who are on dialysis or soon will be. They cannot go to Alice Springs. They will be stuck here in Adelaide too. For the rest of their lives the have to be near the dialysis machine. They will need their families to come down to Adelaide too…

If we had a renal unit in the APY Lands people could still live in their communities and on their country and have dialysis. Families would not have to move a long way away from their own places. Maybe to start off on dialysis they would still have to go to Alice Springs or Adelaide, but then they could come home and have dialysis in the APY Lands…

I am asking for you to support my request for a dialysis unit in the APY Lands.[iv]

Mr Brown’s wife passed away in early 2011.

Fayeanne Jones

Fayeanne Jones lives and works in Pipalyatjara. In March 2010, she told her story in a letter to State and Federal Members of Parliament:

Recently [my partner] went to Adelaide to be with and help his father who, just three weeks ago, went on dialysis. There are lots of Aboriginal people in Alice Springs and Adelaide who are from the APY Lands on dialysis. They feel homesick and want their families more than ever and are always ringing them. … Instead of going to towns or cities why not build a hospital for dialysis patients on the lands…

My mother lives in Perth W.A. and has been on dialysis, for about eight years. She always talks about being in her own country and eating healthy bush food, and being with us, her family. I [have] been travelling backwards and forwards up and down between Perth and Pipalyatjara for eight years now … I really wish they would have some dialysis machines in remote areas…

Aboriginal people would like to have dialysis hospitals on the remote lands. That way they can feel happy with [the] families and friends and live a healthier life.[v]

Residents of Topsy Smith hostel

A number of people on dialysis in Alice Springs live at the Topsy Smith Aboriginal Hostel. On 26 January 2010, 13 residents – 11 women and 2 men – wrote a combined letter to State and Federal Members of Parliament. In the letter, this group of Anangu called on governments to “start working with us now to make dialysis available in remote communities in central Australia and the western desert.” The letter continued:

The best would be to have dialysis units in every main remote community. That would save a lot of heartache and a lot of money: our money, and the governments’ money.

Please start listening to us about dialysis treatment in our communities. Anangu must be trained and supported to do this work…

Perhaps not all politicians and government people understand how our families are scattered and our communities made weak because of the way our struggle with kidney diseases and diabetes is handled by governments and health services.

That’s why we are writing this letter; we want you to understand.[vi]

Nura Ward

Nura Ward is a 71-year old Anangu woman from Pukatja. In February 2010, she was admitted to the Alice Springs Hospital where serious kidney problems were identified. In response, the hospital began making plans to transfer Mrs Ward to Adelaide.

On 23 February 2010, the NPY Women’s Council highlighted Mrs Ward’s situation in a media release in which her niece (Melissa Thompson) commented:

It was bad enough when people had to go on dialysis and live in Alice Springs, but this is much, much worse. We might never see Nura again. She came in to hospital and now they want to shift her to the city, to Adelaide. That’s a very cruel thing, especially for an old lady…

What will she do there – with no family, no arts centre with other women around, no close friends? Will she sit in a room by herself waiting to get hooked up to the machine every few days? …

At least in Alice there are other renal patients and patients’ wives – some relatives and childhood friends from her country. She’ll be lost and lonely like the others who have to live far away for dialysis.

She is upset and doesn’t want to go. But it’s not just about Nura. This is happening to Anangu from the Lands because governments can’t work out how to provide services and accommodation properly for these people with kidney failure. Can’t they see them coming? Can’t they count? It’s been happening for years but they don’t listen… Now [Anangu] get this choice – go to Adelaide or go home and get ready to die.[vii]

Click here to download a copy of the media release (file size: 395KB)

Anangu speak out at dialysis forum

On 29 September 2010, the NPY Women’s Council held a half-day forum at Umuwa on the APY Lands. The forum was an opportunity for Anangu women from across the Central Australian tri-state region to discuss the ongoing renal dialysis crisis and express their views on the future provision of dialysis treatment.[viii]

Click here for an account of the forum’s discussion.

Anangu in Alice Springs

In July 2011, a group of eleven men and women from seven APY communities wrote a combined letter in which they described how difficult it is for them to live in Alice Springs and called for dialysis to be available on the APY Lands:

On the APY Lands, Aboriginal people have got no dialysis. We really want to go back to our own country, to the APY Lands …We know that some people who are living in the Northern Territory have already got their own dialysis machines in their own communities, but we’ve got nothing in our communities… we want to go back to our own country to help our old people to look after our young people and be with our families; to teach our young ones to dance the corroboree and have ceremony…

When we must live in hostels [in Alice Springs], our families can visit but they cannot stay. So we are separated and this makes us sorry and sad.[ix]

Click here to download a copy of the full letter (file size: 663KB)

Kinyin McKenzie

Kinyin McKenzie is an Anangu man from Pukatja with end-stage renal disease living in Alice Springs. In January 2012, Kinyin raised his concerns about the need for dialysis to be available on the APY Lands in a letter to The Advocate (an Alice Springs newspaper). The letter generated a number of newspaper articles.

Click here to download a copy of Kinyin’s letter (file size: 236KB).

Click here, here, here and here to read some of the newspaper articles.

This article has been archived and will no longer be updated. It will, however, remain accessible online as a source of background information for anyone wishing to undertake further research on this issue. Information included in the article was current at the time it was archived. Keep in mind, however, that Ministerial changes and names of departments, among other things, may have since changed.


[i] For example, in the first half of 2006, Wiru Palyantjaku – an Anangu Task Force charged with identifying service delivery needs and targets – called on the government “to seek funding for the provision of dialysis machines” on the APY Lands by 2011 so that “people get treated locally” (Wiru Palyjantjaku, 2006, “Priority Areas Workshop,” draft document, p14). See also: Tregenza, J. 2002, “Review of the delivery of services to people with disabilities on the Anangu Pitjantjatjara Lands,” p29. Also: Parliament of South Australia, 2004, Report of the Select Committee on Pitjantjatjara Land Rights, pp218, p34.

[ii] For more information on this decision and subsequent developments, click here.

[iii] Burton, L. 2 February 2010. Letter to Hon John Hill MP.

[iv] Brown, C. 8 November 2009. Letter to Hon Jenny Macklin MP

[v] Ms Jones’ letter was composed in early March 2010. The Paper Tracker understands that copies of this letter were sent to, among others: Hon John Hill MP, Mr Rowan Ramsay MP and Ms Lyn Breuer MP.

[vi] This letter, composed on 26 January 2010, was signed by Pantjiti McKenzie, Nyukana Baker, Jillian Seven, Kutungu Munti, Maringka Bennett, Marlene Pareroultja, Sarah Goodwin, Goodwin, Shirley Watson, Rosie Patterson, Rene Kulitja, Kanytjupai Armstrong, Simon McKenzie and Richard Kulitja. The letter was sent to, among others, Hon Jenny Macklin MP, Hon Nicola Roxon MP, Hon Warren Snowdon MP, Hon Mike Rann MP, Hon John Hill MP and Hon Jay Weatherill MP.

[vii] Thompson, M. cited in NPY Women’s Council. 23 February 2010, “It’s no life for an old lady. Remote renal patient told: ‘Go to Adelaide or go home to palliative care’.” Media release.

[viii] Smith, M (NPYWC). 29 July 2010. “Invitation” to 30th anniversary celebration of the Ngaanyatjarra Yankunytjatjara Women’s Council.

[ix] This letter, dated 8 July 2011, was signed by Kinyin McKenzie, Nyukana Baker, Kanytjupai Armstrong, Tjukapati Brumby, Billy Nelson, Yami Connel, Tony Campbell, Kutungu Mundi, Rupert Goodwin, Sarah Goodwin and Goodwin Wangka.

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