Delivering dialysis services within remote indigenous communities can help reduce chronic kidney disease and keep communities intact, doctors say.

For Yalmay Yunupingu, moving to Darwin for five years so her husband, the Yothu Yindi frontman and renowned Yolngu leader Dr Yunupingu, could receive dialysis for his end-stage kidney disease was a nightmare.

Looking after her husband was no easy job, and it was compounded by the separation from their home.

"We both tried hard, looking after each other, but sometimes it was very hard ... it was a nightmare," she told a panel on renal health at the Garma Festival in Arnhem Land on Saturday.
"I was homesick nearly every day; that's how much we were missing home, and also missing the family."

Chronic kidney disease is a huge problem for Aboriginal people living in the remote Northern Territory, and many sick people choose to stay on country and not receive dialysis because they do not want to be isolated and alienated from their families, and because of cultural obligations.

The federal and NT governments this week announced more than $25 million in funding for dialysis patients in central Australia to be treated in their communities, but it remains to be seen whether there will be money for patients in the remote top end.

West Australian man Ronald Morgan had his first kidney transplant when he was five, donated by his mother.

It held out for 23 years before it failed and he had to move his family 3000 kilometres from Wyndham to Perth, disrupting his children's education and struggling to find work while he received treatment.

"The biggest thing about being sick is looking for support," he said.

Darwin-based kidney specialist Paul Lawton said he had "seen enough of the distress of Aboriginal people on dialysis, particularly the dislocation story".

Dr Lawton said a lot of the most severe cases of kidney failure could be prevented through good resourcing of primary health care services in remote communities.

Eddie Mulholand, chief executive of local health provider Miwatj Health, estimates there would be another 61 people needing dialysis in northeast Arnhem Land without proper funding.

As it stands, patients from Yirrkala are on a three weeks on, three weeks off rotation getting treatment at home and in Darwin, because of a lack of local dialysis chairs and a desire to stay close to home for as long as possible, where ties to country are very strong.

Gundumuk, a local patient, said she was happy to be able to receive at least part of her dialysis at home, which she administers herself.

"The mission is for us that we come together, Yirrkala mob, how we can get back home, because home is something we leave behind, rushing to Darwin just because of our chronic disease," she said.

"I feel really happy here at home, glad to see my family, glad to see my grandkids."

Alan Cass, of the Menzies School of Health Research, said kidney disease could fracture communities as elders get sick and are relocated together with their families.

"These are community leaders; when one person moves from Yirrkala to Darwin often a family of five goes with them," Dr Cass said.

"The impact of this disease is on the individual, on a family, on children, who have a disrupted education, on employment ... there are times when things are so intertwined we have to address health issues in order to get the outcomes we want in education, employment and community development."

KIDNEY DISEASE FOR ABORIGINAL PEOPLE:
* Kidney failure is the main health and social problem affecting East Arnhem Land
* Chronic kidney disease accounts for 50 per cent of all hospitalisations in the NT
* 1000 people in the sparsely populated region of north-east Arnhem Land have some level of kidney disease
* More than 2000 indigenous people have severe kidney disease and need dialysis treatments three times a week for five hours in hospital or a kidney transplant to survive
* Kidney disease is 50 times more prevalent in remote areas than among the wider Australian population.

(SOURCE: Miwatj Health; Menzies School of Health Research; Garma Festival August 2015)