Indigenous health: outback hero helps patients with kidney disease

Find out how one organisation is improving Indigenous health by tackling chronic kidney disease and reducing hospital stays in remote areas.

Health Agenda magazine
August 2019

Alice Springs nurse Sarah Brown is known to her colleagues as ‘Napaltjarri’ – friend and partner. She is part of the remarkable venture that’s transforming outcomes for people living with chronic kidney disease across remote Australia.

But Brown describes herself as ‘chief toenail-cutter and chin-plucker’ at Purple House, the organisation she leads.

To the rest of the country she’s a HESTA Nurse of the Year, an Australian Financial Review BOSS True Leader, an Australian of the Year nominee, and CEO of a Telstra Business of the Year. 

What is kidney disease?

Kidneys have the important role of removing waste from the blood. Chronic kidney disease is diagnosed when there’s evidence of kidney damage lasting at least 3 months. Kidney disease is caused by factors like poor diet, diabetes, smoking and high blood pressure. With end-stage kidney disease (ESKD), people require a transplant or dialysis to survive.

‘Healthy kidneys are cleaning your blood all the time,’ says Brown. ‘But if your kidneys should fail, waste, toxins, salt and extra fluids build up in your blood and it’s very dangerous.

Dialysis does the job of the kidneys: it cleans the blood. If you’re on haemodialysis, you’re hooked into a machine for 4 or 5 hours, waiting while your blood gets filtered, every second day, for the rest of your life.’

ESKD is about 8 times more common for Aboriginal and Torres Strait Islander people than other Australians, reports the Australian Institute of Health and Welfare. And it becomes more common as you get older.

Art funds new approach

Previously, dialysis was only available to Central Australians in either Alice Springs or Darwin hospitals. This meant people living in remote areas were dislocated from their country and travelled far for treatment.

‘You were in a place where no one spoke your language, [you were] lonely, homesick … on someone else’s country,’ says Brown.

Brown explains that patients made a habit of jumping in the next car home, hiding from health services until they had to be taken into town for emergency dialysis, then repeating the cycle. Family, culture and community relationships were suffering, and children watched their parents and grandparents disappear for long periods, only to die far from home.

One leader from the tiny but culturally rich community of Kintore, 530km west of Alice Springs, started knocking on doors, asking, ‘Why can’t we have a dialysis machine in Kintore?’ But he couldn’t get traction with the idea.

Undeterred, the Kintore and Kiwirrkurra peoples, together with the Papunya Tula Artists, rallied the Australian art community and in 2000 held an auction of their work at the Art Gallery of New South Wales. They raised an astounding $1 million.

A kidney committee was formed and Brown was hired as CEO. In the corner of her Alice Springs living room in 2003, with her 3 kids at her ankles, she went to work on a constitution, a bank account and charity status for the new Indigenous-owned and run not for profit that would become Purple House. The official name of the Purple House is the Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation.

Keeping community connection

Sixteen years later, Purple House staffs and manages 14 remote dialysis clinics across the Northern Territory and Western Australia and is working towards opening its first in South Australia. The Purple Truck – a med-tech vehicle bright with Indigenous art – takes people home for community visits, trucking 2 dialysis chairs and a wealth of kidney health information with it. It then takes patients back to where they’re receiving care.

Patients in remote dialysis clinics sit with grandchildren on their laps, watch movies, and remain on country and on dialysis ‘sucking the juice out of life’, as Brown says.

For patients such as Ningura Napurrula, an elderly Kintore woman and internationally revered artist, the final 5 years of her life were spent at home, creating and living, thanks to Purple House. ‘And when she couldn’t have dialysis any more, everyone rallied around to give her a good time,’ says Brown. ‘She died with a belly full of lizard – which is a good Pintupi way to go.’

A fleet of nurses with specialist dialysis training live alongside the permanent dialysis units. And Purple House is up-skilling dialysis patients and other community members for jobs as cultural brokers to assist nurses, gardeners, cooks and, in some cases, trainees, with a view to get accreditation as Aboriginal health practitioners or nurses themselves. 

The house’s hub in Alice       

The operational heart of the organisation, Purple House in Alice Springs, boasts a karaoke machine, a pizza oven, a firepit for singing and cooking kangaroo tail, washing machines, a GP, an occupational therapist and an occasional hairdresser. Patients stay until they’re well enough to go home to permanent clinics on country or home for visits.

‘We reckon ours is the only dialysis unit on the planet where patients come to hang out on their days off treatment,’ Brown says proudly.

‘Purple House now provides 70% of Central Australian dialysis services and is not only changing lives, its vast program has saved many lives,’ Ken Wyatt, Minister for Indigenous Australians, said last year.

Brown says she and directors receive calls every day from communities across Australia wanting to emulate their methods.

Solutions for remote Australia

Fundraising for Purple House continues through a few streams, including support from government and philanthropy, with art remaining a core funding pillar.

November 2018 marked a huge win for Purple House, when federal health minister Greg Hunt announced a new Medicare item number for dialysis done in a remote location with a nurse or health worker.

‘Purple House is about Aboriginal people having a problem, coming up with a solution, and changing things not just for themselves, but for the whole of remote Australia,’ says Brown. ‘It’s not about running around … trying to change everything. It’s about getting to know people. Listening. Sharing. And helping them do what they want to do.’ 

Photography Shaana McNaught