Aboriginal kidney sufferers opt to die at home

A road near Alice Springs in Australia's outback. Photo / Tourism NT

Aborigines needing renal dialysis are choosing to die in central Australia rather than travel to Adelaide or Perth for treatment, a medical advocacy group says.

Stephanie Bell, from the Aboriginal Medical Services Alliance of the Northern Territory (AMSANT), says Aboriginal people from Western Australia and South Australia, living just across the Northern Territory border, are being refused treatment for kidney failure in Alice Springs.

"They're being told that they need to go 1500km to 2000km to get access to renal care," she said.

"To expect people to travel and leave their country and their family unit to seek treatment where they do not have family support puts added stress on people's health."

Because of the nature of renal failure - a life-threatening condition primarily caused by diabetes, which can only be treated by a kidney transplant or several hours of dialysis at least three times a week for the rest of their lives - Ms Bell said Aboriginal people are being told to relocate to areas that are completely foreign to them.

"You're dealing with a population where English isn't their first language," she said.

"People are making a conscious decision that they would rather stay home ... in their communities and die.

"People are making the decision to live or die on the premise of access to renal dialysis and I don't think anyone should be felt to make that decision in the first place.

"You can't say to people, 'go home and die, because we haven't got the policy right'," she said.

Alice Springs Hospital general manager Vicki Taylor said the hospital had 197 dialysis patients on its books, but the capacity to treat only 167.

She said the hospital was able to cope with that number of patients because about 20 per cent did not attend their scheduled dialysis appointments.

Ms Taylor said an extra eight people had unexpectedly come on to dialysis at the start of the year, putting strain on the system.

"We track their renal functioning and when it gets to a certain level they have to go on to dialysis, so we prepare well in advance for people coming on to dialysis," she said.

"The substantial increase in renal dialysis patients over the past 12 months could not have been anticipated."

She said the NT health system would have coped ordinarily because the number of new patients was, sadly, mitigated by several deaths every year.

While the Alice Springs Hospital is no doubt under strain, Ms Taylor said dialysis patients in central Australia had better outcomes than those elsewhere in the country.

"Our survival time after five years is 56 per cent so that means you've got a one in three chance of still being alive after five years," she said. "The national average is 46 per cent."

Ms Taylor said the territory government would provide another 12 beds in Alice Springs, with the capacity to treat a further 48 patients, by April next year.

However, Ms Bell said she was concerned about how patients in the Territory and interstate would get treatment in the interim.

"We should be recognising that Aboriginal people particularly in central Australia have the highest rate of diabetes and renal failure of anywhere in the world," Ms Bell said.

"This is the result of decades of neglect of a whole range of other services and programmes that have not been reaching Aboriginal people."

AMSANT is calling on all three states to invest in nocturnal dialysis in Alice Springs.

It's a concept Ms Taylor said the Government was researching.

The organisation required for nocturnal dialysis was difficult, she said, because of staffing concerns and late- night transport between the hospital and remote communities.

"Our Aboriginal liaison officers did a survey about a month ago, which found just under half would participate in nocturnal dialysis," Ms Taylor said.

"Once we set it up we will get a better idea of whether or not they want it.

"We've trained four people to go back to their communities and home- dialyse and we would like those sort of strategies to also be mirrored in the those [interstate] locations close to us."

The Greens have called on federal Health Minister Nicola Roxon to intervene and have used the case of one of Australia's best known Aboriginal painters to highlight the seriousness of the issue.

It is understood Patrick Tjungurrayi, who last year won the inaugural WA Indigenous Art Award and lives in Kiwirrkurra, about 1200km east of Port Hedland, has been unable to receive dialysis at the Kintore clinic in NT, which is about 140km east of Kiwirrkurra.

"I am extremely distressed to learn of Patrick's situation, particularly as he seems to be caught in the middle of a state, territory and federal impasse," Australian Greens health spokeswoman Senator Rachel Siewert said.

"The minister needs to be leading a joint planning effort with her state and territory counterparts to ensure that there are the facilities to meet the growing demand for renal services plus the agreements in place to share resources across jurisdictions."

- AAP