APY Lands: dialysis forum in Umuwa

First posted on 12 October 2010 under APY Lands, Kidney Disease & Umuwa.
This article has been updated and archived.
Tags: advocacy, dialysis & health

Introduction

Professor Alan Cass

Professor Alan Cass

On 29 September 2010, the Ngaanyatjarra Pitjantjatjara Yankunytjatjara (NPY) Women’s Council held a Cross Border Renal Dialysis Forum in Umuwa to “discuss the current renal dialysis crisis in Central Australia.”[i]

Around 200 people attended the forum.[ii] While most participants were Anangu women from the cross-border region,[iii] others came from Adelaide, Port Augusta, Alice Springs and Kalgoorlie. This smaller group included some Anangu women who require regular dialysis treatment and are therefore unable, at present, to live on their traditional lands.

Professor Alan Cass also attended the forum. Since August 2010, Professor Cass has led a team of researchers that is undertaking a government-funded investigation into the delivery of kidney treatment services to people from Central Australian remote Aboriginal communities.[iv]

The forum lasted for two and a half hours.

An interpreter translated each speaker’s contribution – as required – from Pitjantjatjara, Yankunytjatjara or Ngaanyatjarra into English (or vice versa).[v]

Opening remarks

The forum began with some introductory remarks from the Coordinator of the NPY Women’s Council (Andrea Mason). This included an outline of the events that had led to the establishment of Professor Cass’s research project and the scope of that work.

Professor Cass then briefly addressed the forum. He noted the high incidence of kidney disease “in this country that the NPY Women’s Council represents” and emphasised the importance of hearing directly from Anangu about the impact that kidney disease has on their families and communities. Professor Cass spoke of his commitment to make “sensible, practical sustainable” recommendations that will meet the future “health, cultural and social needs of patients with kidney disease.”[vi]

Anangu stories

In all, about 20 Anangu women addressed the forum. This included women from Pukatja (SA), Pipalyatjara (SA), Kaltjiti (SA), Mutitjulu (NT), Aputula (NT), Kaltukatjara (NT), Warakurna (WA) and Warburton (WA).

Each woman spoke from direct experience. Some were dialysis patients themselves. Others were the wives, mothers and sisters of people on dialysis. Still others had advanced renal disease and spoke of their fears as to what the future might hold for them.

For example, Kanytjupai Armstrong comes from Pukatja. At the forum, she described the impact of having to move to Alice Springs for dialysis:

Being far away from family and country is really distressing. We talk with each other, the dialysis patients, and all say the same thing that to be away from our family and country is devastating. Over and over again we feel that despair, [that] depression. Our spirits are with our family and country…

We want to be back in our country, back with our families so that we don’t have that distress…

I can see my family when they come to visit but that’s not the same as being together properly as a family all the time… and knowing what’s going on in their lives.

Maringka Burton lives at Railway Bore homeland on the APY Lands. She told the forum she has two close relatives on dialysis, one in Alice Springs and one in Adelaide. She said:

I feel like I’m torn in half – one arm here, one arm there. How do I look after [both relatives]? How do I [care] for them both? I can’t get down to Adelaide to visit because I can’t afford it… It’s especially hard when the person who is away gets sick … when that happens you feel like there should be assistance to [help you visit] … I want to say how upset I am for those two family members far apart and no one to visit them.

Nura Ward resides in Pukatja and is living with renal disease. She told the forum:

I was born and bred on these lands. How on earth could I go all the way to the city, away from my family and country, knowing there was no possibility for them to come down and stay with me, no accommodation, no facilities … There’s no way I could think about being so far away… I’d just be in total despair all the time …

I know that before long I will have to go on dialysis. I’ve already got the fistula in place. They’ve told me in about six months time. So I’m thinking ahead and really want there to be the funding. We’ve already got quite good new clinics in all of the communities but now we need the extra funding to enable [dialysis] to be provided on the Lands. Maybe it’s going to be in [Pukatja], maybe in Mimili, or Amata – I’m not sure but somewhere so we can stay on our own country.

Rene Kulitja comes from Mutitjulu, an Anangu community alongside Uluru. For many years, Rene and her husband, Richard, worked in the tourist industry. Since 2002, one of Rene’s paintings has adorned a Qantas jet.[vii] In 2004, Richard accepted an international tourism award in Washington on behalf of Anangu Tours.[viii] The couple moved to Alice Springs when Richard needed dialysis:

Yulara is a huge place for tourism and significant for Anangu … In the past [my husband] worked seven days a week looking after those tourists. I also did a lot of work with tourists. How can it have come to this point where the two of us who made such a contribution to tourism in that area are now stuck far away from home and can’t get back to that place?

Another woman recounted the experience of her sister who has remained in Pipalyatjara after her partner was moved to Adelaide for dialysis:

She has a lot of grief about being torn between wanting to be able to visit her partner … and needing to stay closer to home. How can she? She just can’t make it down to Adelaide. So we need that one place that’s closer to home and [we] want people to understand how difficult it is and how the stress makes it worse for people who are already sick, that extra pressure of being without their loved ones. We want them to be able to be close to each other.

A number of women spoke about the anxiety families experience when someone moves away for dialysis:

We don’t know where that person goes and it’s really sad… Some go to Adelaide and that’s a long way. The family is sitting there and they don’t know where that person goes… We are all sitting here – as the women – worried, with the worries inside our heart.

Others described the way family members skip treatment so they can come home for a while:

[My sister] keeps coming home and missing treatment. I can’t stop her … I love my sister. When I can’t visit her, she always comes back… So we need that funding, that money, so we can get the facilities we need in our own country where we belong.

My son gets really homesick… when he does get home he can’t stay long and [then] he has to be evacuated.

On a more positive note, towards the end of the forum, Julie Anderson, an Anangu woman from Aputula, spoke about her experience of home-dialysis, prior to a successful kidney transplant. Her sister (Mary Anderson) emphasised the considerable challenges the extended family had overcome to support her sister.

Options and obstacles

During the forum, a number of treatment options were flagged, along with potential obstacles and long-standing problems.

The possibility of establishing a permanent dialysis facility on the Lands was strongly supported by some, but questioned by others in terms of its viability. For example, some people suggested that interruptions to electricity supply would make it impossible to provide dialysis at the community level. Other countered that the completion of the new Central Power Station at Umuwa – along with the retention of back-up generators – should remove any power supply problems. Questions about water quality and its impact were also raised and debated, with some people calling for an independent water survey to be undertaken.

Others spoke of the need for a mobile renal truck to be built that could enable people on dialysis “in town” to make short trips home.

A number of women highlighted the expense of visiting family members on dialysis in Alice Springs and the difficulty of finding accommodation, even for relatively short periods of time.

While one woman on dialysis spoke of living permanently in Adelaide, most women spoke of Adelaide and Perth as being too far away from country and called for more dialysis – and associated accommodation – to be available in Alice Springs.

Professor Cass’s remarks

Towards the end of the forum, Professor Cass was called upon to provide some information on possible service options. The following is an edited version of his remarks:

Thank you for your stories. It’s very important to hear the terrible impact that having to move from your lands, your family and your community has. We know from your stories there are many people across the NPY lands who need treatment.

There won’t be just one type of treatment that suits everybody because some people might be younger and stronger… some people might want to do the treatment themselves and other people might need more help.

A good and organised renal treatment – and there are some very good things happening [already] – will need strong support from Alice Springs and Adelaide and Perth … because that’s where a lot of the kidney doctors and where a lot of the expertise is. But what we need is a way to support people to get treatment as close to home as possible…

Across this [NPY] region … there will be people using different types of dialysis and that is good. We should try to match the type of dialysis that best suits the person and where they live and where they can access treatment.

Many people have [access to dialysis] machines. They live in town. That will remain important. What we need to look at is different ways where we can try to get people home…

Some people … feel they are looking after themselves very well if they can do their own dialysis. I know and I have heard of Aboriginal men and women doing their own dialysis in many parts of the country. So that is part of the answer.

You also know that at Kintore they have the nurses to help people on the machine. So there you have that example where people can go and spend some time on the land with family and community, but … spend most of the year in town. People tell us that’s very important because [they] can go home for business on the lands and to be with family – [it’s] not perfect – but it does help them a lot.

Other types of dialysis being used now are where there might be a mobile van with a machine in it or something like a demountable that can come out to parts of country and be used for dialysis.

So all of these different ways of giving dialysis will need to be part of the answer.  For me, the important thing is to hear what is important to you and to see how we can try to best keep people strong and how we can try to help them to stay in touch with their family, their community and their land while they have dialysis treatment…

We all want to work together to try very hard to address your health, social and cultural issues that you’ve told us about…

We know what a very real problem this is for you and … are working to try to come up with some answers that are real and that will address some of these very important problems for you…

When I talk to people like you, people tell me, ‘How do I keep my community strong so that they don’t get kidney disease?’ We won’t forget that and will talk about that and we will work with your clinics and think about ways we can prevent the young people getting sick and keep the community strong.

Next steps

Professor Cass and his research team are due to finalise their report to government by the end of 2010.[ix] As part of that work, members of the research team will consult with Anangu and other stakeholders in APY communities, Alice Springs, Adelaide and other locations.

Consultations in some APY communities are scheduled to be held in the week beginning 18 October 2010.[x]

Click here to download an information sheet on the Central Australia Renal Services Study
(file size: 226KB)

The NPY Women’s Council is continuing to advocate on the behalf of Anangu on dialysis and their families. The Council is currently preparing a report on renal disease and access to dialysis. The stories and aspirations shared at the forum will be included in that document.

The Paper Tracker attended the dialysis forum at the invitation of the NPY Women’s Council.

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] Smith, M (NPY Women’s Council). 29 July 2010. “Celebrating 30 years 1980-2010,” invitation.

[ii] The forum was held in a large shed in Umuwa. The Paper Tracker estimates that about 100 people sat inside the shed during the forum, while another 100 listened outside. The NPY Women’s Council subsequently reported that around 150 women had attended the organisation’s Annual General Meeting (held the previous day) and that a number of other women had arrived the following day. The Council also noted that it had served 300 lunches on the day of the forum (Mason, A (NPYWC). 8 October 2010. Email to J. Nicholls).

[iii] The NPY Women’s Council represents women from communities in a tri-state “cross border region” that includes remote parts of South Australia, Western Australia and the Northern Territory. In all, the region covers about 350,000 square kilometres (see: NPY Women’s Council. 2007. “About us”, webpage. Available at: http://www.npywc.org.au/html/about_us.html. Accessed 10 October 2010.

[iv] George Institute. September 2010. “Central Australia Renal Services Study,” information sheet.

[v] Ms Kathy Tozer was the interpreter.

[vi] In this article, direct quotations are taken from a transcript of the forum discussion prepared by the Paper Tracker. A final and more formal account of the forum is being prepared by the NPY Women’s Council.

[vii] Rene Kulitja’s painting is called ‘Yananyi Dreaming’ and was painted onto a Qantas 737-800 jet in 2000 (see: Qantas. 2010. “Flying Art,” webpage available at: http://www.qantas.com.au/travel/airlines/aircraft-designs/global/en. Accessed 11 October 2010.

[viii] This award was presented to Richard Kulitja by Queen Noor of Jordan at the National Geographic headquarters in Washington DC in June 2004 (see: ABC. 10 June 2004, “Anangu Tours Wins 2004 World Legacy Heritage Tourism Award,” Message Stick Online. Available at: http://www.abc.net.au/cgi-bin/common/printfriendly.pl?http://www.abc.net.au/message/news/stories/s1128753.htm. Accessed 11 October 2010.

[ix] George Institute. September 2010. “Central Australia Renal Services Study,” information sheet.

[x] This date was confirmed by the research team’s project manager (Ms Samantha Togni) during a conversation with the Paper Tracker’s Jonathan Nicholls on 11 October 2010. See also: Campe, B (OATSIH-DoHA). 29 September 2010. Email to J. Nicholls.

The Paper Tracker works hard to provide accurate and up-to-date information. We will correct any inaccurate information as soon as it is brought to our attention. Please contact us if you have additional information or can provide us with an update.