by Amal Awad
Wyatt has visitors from Indigenous communities wanting solutions or advice. ‘I enjoy the good conversations. Sometimes I’ll get jarred, but that’s part of the job that I have. That’s also part of me being from our community because people do have expectations of us.’
An example of being jarred is when an elder from Wyatt’s own country chastised him for not making sure that the needs of older Noongar people are addressed. ‘Then, when she finished telling me off, or jarring me, then we had a conversation about the challenges, what we need to do, this strategic way that they’ve got to engage others as well, and what I can do.’
Wyatt asked for numbers – how many Noongars are now needing aged care so they can help them. ‘And part of the challenge is our people, when you don’t know what you don’t know, then you don’t ask the right questions …’
‘Are you finding that people are generally responsive to that? They’ll say that they’ll help you?’
‘Yeah, they do. One thing about our people, it doesn’t matter where you are, and you would have seen that at the Purple House, people pitch in and help. And if we need something badly, then we work together and by doing what we can to achieve some of the outcomes. And certainly the Noongar women and the elders who came to see me have said that they will continue to work on this issue and get me that information so that I can start to work on their needs. I’ve got a sense of, luckily, the age range in Perth metropolitan area, but I also need to know people who live outside of Perth in Noongar country who aren’t accessing any services so we can help them as well.’
He says there’s a whole range of different programs that the health system runs, and Indigenous populations need to access them. ‘I’ve got some work being done on plotting where all the GPs are, plotting where all the community-controlled health services are, where all the hospitals are, and then where the Aboriginal populations are. Because what I want to do is look at the points of access near that community that we should see them dovetailing to, and getting support from, and that’s the important element about making sure people know what services are around, and what they’re offering.’
‘Keeping our spirit alive and strong’
In central Australia, people say that the spirit is held by the kidney. ‘So if you’ve got sick kidneys, you’ve got a sick spirit,’ says Sarah Brown, the CEO of the Purple House, or the Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation. ‘It’s Pintupi,’ she explains of the language, which is from west of Alice Springs, out near the Western Australian border.
The Purple House is an Aboriginal community-run organisation. Twelve directors sit on the board, all Pintup/Luritja people from remote communities of the Western Desert, some dialysis patients themselves.
‘Our name means “keeping” or “making all their families well”, so it was in recognition that if people are away from their country and their family, and their sacred sites, then they’re sick and homesick, and life has lost a lot of its meaning,’ explains Sarah. ‘But also they’re not there in the community to pass on their cultural knowledge to their kids and their grandkids.’ The whole community is lessened because of it.
The Purple House is an organisation dedicated to supporting patients in Alice Springs, helping as many of them as possible to get home and be ‘on country’. Their mission is to improve the lives of people suffering renal failure, reuniting them with their families; and more broadly to reduce the impact of kidney disease on Aboriginal communities. It is set out clearly through three strategic goals, depicted in a circle: in the centre is ‘on country’ (ngurra) – ‘help people to be on or return to country’; surroundings that constitute ‘a good life’ (kurrunpa wanka) – ‘help patients and their families to live the best life possible’; and on the outer is ‘right way’ (tjukarurru wangkantjaku) – ‘the organisation will work hard to do the best we can for the patients, families and stakeholders’. Sarah emphasises that this also means the ‘right way culturally’.
In December 2017 an article on the ABC website, ‘Proving the link between living on country and improved Indigenous health’, reported that ‘First Nations people who spend time on country have better health outcomes’, with a significant study, ‘Mayi Kuwayu’ (National Study of Aboriginal and Torres Strait Islander Wellbeing) underway at the Australian National University Centre for Epidemiology and Population Health.
There is a strong idea among desert communities about holding on close to people, being present for ceremony, passing on stories of country, and looking after your family well. An undercurrent is this concept of doing things the right way culturally. All of this is threatened when people leave their communities to receive dialysis three times a week in a town new to them, for the rest of their lives.
‘When they are leaving their bit of land, their sacred sites, their family connections, they’re often leaving their houses and their jobs and everything that is significant to them,’ Sarah says. ‘And having to live on someone else’s country – because Alice Springs is Arunta country, and these are Pintupi people – causes people great practical hardship, but also people said they were living in shame on someone else’s country, waiting for their next dialysis day, and waiting to die.’
In 2000, in a bid to address the growing number of Aboriginal people migrating to Alice to receive treatment for end-stage renal failure, Sarah was part of a group knocking on the doors of politicians to point out that the lack of dialysis services out bush was the reason for Alice’s growing population. They appealed to the practical mindset – that people were using public housing, hospital beds, and social workers because of this migration. At the time dialysis was only available in Alice Springs and Darwin. The aim was to have a dialysis machine in Kintore, a remote Northern Territory community a little more than 500 kilometres west of Alice Springs, but the politicians weren’t interested.
I first met Sarah at the Art Gallery of New South Wales when she was on a flying visit to Sydney. The gallery is a place that holds significance for her and the Purple House, because it was there that large, collaborative paintings were sold at a fundraiser – work from people from Kintore and Kiwirrkurra auctioned off with the help of the Papunya Tula Artists (a community-driven arts centre) and Sotheby’s. They raised over one million dollars.
It was a ‘disruptor’, says Sarah. ‘Here were these people who suddenly had their own money that no one else could tell them how to spend, and they were determined to find a way to do dialysis out bush. And they weren’t going to take no for an answer.’
The Purple House was established in 2004, and works hard to get the sickest, most unstable patients safely home on country. The organisation placed a machine in the back of the primary health-care clinic in Kintore. ‘And so we just really gently, quietly started,’ Sarah says. ‘We dialysed an old lady in Alice Springs. We got her really well, cooked her up her favourite food, which was rabbit and ox tongue,’ Sarah laughs, ‘and then we got her back to Kintore, and she was the first person to go home to a remote community in central Australia.’
The Purple House grew organically from that. Nowadays the organisation is providing dialysis as far as Warburton, past Uluru, and in Kiwirrkurra, 850 kilometres west of Alice Springs. The roads to both are mainly dirt ones.
The system is flexible. Everyone has a dialysis centre in their regional community, whether that’s Darwin or Katherine, Kalgoorlie or Perth. Next year Adelaide and Port Augusta will also have dialysis chairs. The directors will consider a person’s situation. If someone is very important to a community and doesn’t do well in Alice Springs, he or she may be given a permanent spot for treatment; the younger ones will take turns. ‘It’s the difference between being community-controlled and government-run,’ says Sarah. But the system varies depending on the area. And always, there’s a push for greater funding. Years ago the Rudd–Gillard government commissioned the Central Australian Renal Study, which looked at the issues for dialysis patients in Central Australia. Warren Snowdon,
then the Minister for Indigenous Health, presented it to Parliament in 2010, with dollars attached for the Northern Territory government, which the Purple House has been chasing for the last seven years. The Purple House has now funded dialysis in Papunya, Mount Liebig and the remote Indigenous community of Kaltukatjara.
Nonetheless the organisation needs more money than the funding allows, for running costs and paying for nurses, so it occasionally sells paintings and runs GoFundMe campaigns.
The presence of the Purple House in those communities means there is now either a separate building or a room at the back of the clinic, ‘or a something’, explains Sarah. ‘And we have dialysis machines running six days a week, fifty-two weeks a year. We have nurses living and working in those communities. And then we’ve got the Purple Truck, which has been on the road for seven years now.’
The Purple Truck is a two-chair mobile dialysis unit that can go anywhere. It is designed for the places that are culturally and spiritually significant, with small populations, where the likelihood of having permanent dialysis is quite low. The truck had an immediate positive effect on people who had no prospect of ever getting home, except for their own funeral. A hopeful twist to a dialysis story of living in a strange town, in a hostel, lonely, bumping up against the hospital system three times a week, far from home.
The day I arrive at the Purple House in Alice Springs, it’s also the day of the first dialysis at Mount Liebig, where the Purple House has recently taken over an aged care facility. ‘Our directors agreed to take it on,’ says Raewyn Kavanagh, the Purple House’s Quality Manager, a.k.a. ‘the Happiness Facilitator’ (Sarah’s unofficial title for Raewyn).
They’ve been out at Mount Liebig since July 2017, but their funding agreement only came through in October. They spent six months setting up the centre and it’s passed the quality audit, Raewyn says. It’s a home-care service, with laundry and kitchen blocks, and uses a house reclaimed from another service. The Purple House set it up as it used to be: a place ladies remember as one of respite, where they could sit inside in air conditioning when it was hot, watch TV, have lunch and hang out. ‘It’s a place where the kids can’t come in and out. It’s a bit of peace and quiet for the old people,’ explains Raewyn.
Mount Liebig is around four hours from Alice Springs, up past Papunya. ‘It’s a rough road, it’s not an easy trip to make out there. It’d have to count as one of the most isolated parts of Australia,’ says Raewyn, who has lived in Alice Springs for twelve years. Her husband drives the Ghan. ‘We came up when they put the rail line through from Alice to Darwin.’
Her role centres on Continuous Quality Improvement (CQI) – taking something and making it a bit better, and meeting quality audits and international standards.
Raewyn has been in community roles most of her working life. She has an interest in Aboriginal issues, and she praises the Purple House’s clear vision. ‘When we were taking on aged care, we had to question … this is not our core business –we do dialysis on country. But what’s become obvious now is when you’re having patients go home for dialysis, if they have an aged care service that will work in with that, they will get better care. So this is the only example that exists of aged care and dialysis side by side.’
Raewyn reflects on the impact of having to leave home, family, and wider community for dialysis. ‘Imagine if you had to go on to dialysis, but you had to go to Germany to have it, assuming you don’t speak the language. And it would be really hard and expensive for you to get home, and that would only happen through a lot of organised arrangement, so it’s probably not going to happen that they’re going to send you home to see your family.
‘So that’s how it is for people when they come to Alice Springs. They’re in a whole different world, different language, they have to navigate things like Centrelink, banking; they’re living in a hostel – so never a home, it’s always a hostel, which [has] really rubbish food and [they’re] not treated well in a hostel, always as if you’re in a motel, passing through, when actually, for a lot of people, that’s where you’re going to live for several years.’
Anyone aged fifty or over can access the service, Raewyn says, as Aboriginal people can access aged care younger than the general population. ‘A person fifty-plus has usually got some fairly significant health issues. We’ve got someone with terminal cancer; I think every single one of them has got renal issues. We’ve got one who’s got major heart problems and has had a heart attack previously.’
It’s an important service for community ties and wellbeing. Women tend to be more involved, Raewyn says. ‘The men tend to be more self-sufficient as far as organising activities, going with the men.’
The aged care service now has client assessments and care plans in place, and bush trips are helpful in learning about women’s conditions. ‘All those sorts of things come out with just spending time with them, hearing how they’re going: that is the best way to inform your assessments and understand. You can find out if maybe one of them has just lost a grandson to suicide; or maybe someone’s husband’s been diagnosed with something so they’re worrying about that, and that person might have been their carer.’
Culturally, direct questioning doesn’t work, Raewyn says. ‘If you say, “How are you?” they’ll say “Good.” And you can dig deep, and even if you know someone – certainly if you don’t know someone – they’re not going to tell you anything. If you know someone well, they might tell you a little bit. But if you go on a bush trip, they’ll tell you everything.’
This is affirmed in conversation with Deb Lillis, director of clinical services, who has been with the Purple House for just over twelve years. Currently she oversees all the clinical practices and staff within the organisation, as well as the more crucial elements of patient health. ‘I think the real value in being here for so long is getting to know very well the people I look after, and to some extent also the staff,’ she says. ‘That’s very important with Indigenous culture because you form relationships and the barriers come down. And it’s amazing what you find out when the barriers come down, and how you can help more when you understand what’s happening in people’s lives.’
Deb says the regulars at the Purple House are very allowing. ‘You’re taught general rules when you first come into this culture, and you’re quite fearful of breaking those rules … and they’re the core ones, like not mentioning the name of someone who’s recently deceased.’ But they’re keen to teach, she says. ‘They don’t get angry with you when you make mistakes. At the end of the day they’re very willing to form relationships when they realise that’s where you’re coming from too. The barriers come down very quickly.’
Language barriers are not an issue. While the interpreter service in Alice Springs can be difficult to access, Sarah tells me there are a number of workers at the Purple House with language skills, as well as Aboriginal staff. In the Top End, more than in Alice, they’ve employed ‘patient preceptors’. ‘People who are on dialysis or have had a transplant, and were really good at working their way through the system, who come and help other dialysis patients.’
In the last twelve months, the Purple House has done 6000 dialysis treatments for 157 people across all their centres. ‘So 157 people got at least some time back on country,’ says Sarah.
It’s not enough: in most places the organisation only has enough money to do one shift a day. And working against them are the beliefs that it’s up to government to fund the dialysis, and that people who have end-stage renal failure are going to die anyway, so why spend all this money on old people? Early intervention and prevention are where the money should be directed. ‘And we go, well, we’ve got to do this,’ Sarah says, patting her head and rubbing her tummy at the same time. ‘In what society do you choose between treating sick people and prevention? You’ve got to do both. We shouldn’t have to choose. We are a sophisticated society that can do both. And some of the things that communities are working on to try to reduce the incidence of
kidney disease are going to take some time.’
People are living longer on dialysis now, and people are living long enough to end up on dialysis. Ten to fifteen years ago, heart disease was on everyone’s radar because Indigenous people were dying of heart attacks in their thirties and forties. ‘There’s been a big push on heart health and managing blood pressure, and people aren’t dying so young of heart attacks, so they’re living long enough to be on dialysis. And we’ll get on top of kidney disease, and the likelihood is you’ll see that the rates of cancer in remote communities will increase. So people are just kind of tracking behind whitefella society. We’ll have cancer and dementia being bigger issues.’
A couple of years ago, the Purple House surveyed dialysis patients, asking them two questions: ‘Why do people end up on dialysis?’ and ‘Why are you on dialysis?’
In response to the first question people pointed to fast food and soft drinks, as well as high blood pressure, being overweight, not enough exercise, not enough greens, smoking, childhood infections, premature births. ‘They knew,’ Sarah tells me. ‘They had quite sophisticated whitefella knowledge about chronic disease. And they also said that you get it from your family.’
However, in response to the second question, 100 per cent of the responses – across ages, language groups and sexes –blamed sorcery. Punishment for missing ‘sorry’ business, or perhaps a brother did something wrong in men’s business and wasn’t around to receive punishment, so the person with kidney failure is getting punished instead. ‘You will have heard about pointing the bone?’ asks Sarah. ‘Someone will point a bone at someone, it’s like a hex. So one hundred per cent of people, despite the fact that they knew about this whitefella story of why kidneys get sick, believe that, for them, it was because of this other world, this spiritual world.’
