Yindjibarndi elder Tootsie Daniel sits patiently underneath a tree in the front yard of her home in Roebourne, 1,500 kilometres north of Perth in West Australia’s Pilbara.
She’s waiting for a lift to a kidney dialysis centre, three hours away.
It’s a laborious ritual she is meant to go through three times a week.
“I’ve had problems getting people to take me to Port Hedland to do dialysis,” she says.
“I remember the first week when I came back [from Perth] I missed dialysis for five weeks … it was so unbearable for me.
“I was getting worried and upset … because my body was feeling it.”
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Three hours down the highway in Port Hedland, Yamatji woman Elizabeth Barry has been on the waitlist for dialysis for more than a year.
“Sometimes you do have anxiety because of that, because you know that you just got to take what you can get,” she says.
“If we don’t get dialysis we are dead. It is as simple as that … I’ll take whatever days you give me.”
Lengthy wait lists for treatment
Recent figures from the WA Country Health Service showed the average wait time for dialysis in Port Hedland was 423 days, double last year’s figures.
Locals say ballooning wait times result in a growing number of Indigenous people leaving their communities to access treatment in Perth.
“There’s lots of other people: my people, my family in Perth that want to come back home,” Ms Daniel says.
“Being in Perth is somewhere else. I’m not familiar with, no family, no friends to come visit.
“I miss seeing my family and I’m going to miss my community … it made me feel homesick.”
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First Nations people are at a greater risk of developing chronic kidney disease, with remote communities in Australia having some of the highest rates in the world.
Yinggarda woman Lucy May Bulley lives in Carnarvon, which has the highest wait time for dialysis in regional WA of 469 days.
“Someone had to die before I could get a placement in Carnarvon,” she says.
“They didn’t make room for more people, they only got four chairs.
“The biggest problem is getting nurses and doctors up, especially for us.”
ABC News: Xander Sapsworth-Collis
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Ms Bulley was working as a nurse and enjoyed diving, but gave up both due to her poor health.
“We’ve got no life really … we haven’t got the beauty of going up to go to funerals, which is a big issue for Aboriginal people,” she says.
“We can’t just pick up and go for holiday somewhere or go sit down and spend time with family, because we gotta ask for care.
“Your life is changed forever.”
‘Desperate need’ for dialysis
Across the Pilbara, an area geographically the size of Spain, the WA Country Health Service operates a sole hospital dialysis centre.
Last year, a $1.9 million dialysis clinic was set up at the Aboriginal Medical Service in Newman to ease pressure in the region’s east.
Pilbara Aboriginal Health Alliance spokesman Chris Pickett said it made no sense that the Pilbara’s largest city, Karratha, did not have a renal centre.
“Lack of investment by government, it’s as simple as that,” he says.
“They recognise the need for Port Hedland, and put chairs in the Port Hedland.
“But eight years later, when they built Karratha Health Campus, there was no provision for dialysis. It’s just mad.”
While there are some home dialysis chairs available in parts of the region, to access one patients must be able to self-administer their dialysis or have a carer to do it for them, which means it is not a viable option for many residents.
“My understanding is that about one-third of patients are able to self dialyse, other illness infirmities would contribute to this,” Mr Pickett said.
“Self dialysis is hard to maintain as caregivers need six weeks training in Perth at their own expense to support the patient.”
Mr Pickett said there was a “desperate need” for a nurse-led unit in Karratha, as self-dialysis was hard to maintain.
“The idea that they’re removed from their family supports is particularly difficult for them,” he says.
“In some cases, people just don’t comply anymore so they don’t go for their dialysis treatments, which means that they get very sick and die.”
Average wait times on the increase
The Country Health Service and the state government provided similar responses to questions on growing wait times for dialysis.
“The WA Government continues to monitor the need for dialysis services across the state, including in Karratha,” a spokesperson said.
|
Average wait times (days) for dialysis |
2021—22 |
2022—23 |
|---|---|---|
|
Carnarvon |
398 |
469 |
|
Port Hedland |
193 |
423 |
|
Northam |
463 |
364 |
|
Busselton |
709 |
328 |
|
Geraldton |
245 |
287 |
When asked about the government’s response to the long-wait times for dialysis, the spokesperson said hospital-based dialysis capacity was dependent on infrastructure and staffing.
“The Cook government is undertaking a range of measures to boost recruitment amid global workforce shortages, including in the regions,” they said.
“Patients are also able to waitlist at up to three units, providing greater opportunity to receive care on country.”