Aboriginal people with chronic kidney disease are having to travel hundreds of kilometres for treatment and some are homeless, forced to live in the “long grass”, because of a shortage of accommodation.

Patients and their support networks have called for equal health care closer to their homes in a new report released by the Menzies School of Health Research in the Northern Territory.

Patients told of having to travel or move from their remote homes — some 1000km from Darwin — for treatment.

Others said when the hostels didn’t have enough spaces, they lived in the grass.

The Indigenous Patient Voices: Gathering Perspectives, Finding Solutions for Chronic and End-Stage Kidney Disease Report calls for more holistic care and services closer to communities.

David Croker, a Darwin man who had a kidney transplant 10 years ago, told NIT getting dialysis was a big problem for patients in remote communities.

“For a start they have no infrastructure,” he said. “There are people travelling like 900km, 1000km or even more.

“Most haven’t got dialysis units on their country so they have to come in here and try and get accommodation, which is hard.

“They can live in Aboriginal hostels or if they can’t, some are even homeless, living in what they call the long grass here.”

Mr Croker said the influx of patients could lead to overcrowding in houses when either the patient stayed with families or families came to join them from the communities.

He said patients needed dialysis three times a week for five hours each session.

“They need dialysis back on the communities,” he said.

“These people need to be back on their communities. They are missing out on the normal things that Australia takes for granted — simple little things like birthdays, funerals and missing families and their bush tucker.”

Report lead author Dr Jaquelyne Hughes said current health care systems missed the mark in helping Indigenous patients feel connected to their country, communities and culture.

“We heard overwhelmingly of how people felt lonely, distressed and isolated following relocation to access treatment,” Dr Hughes said.

“Some patients reported homelessness and desperation because of this disconnect. They are not rejecting the desire to live well; they are rejecting the only model of care available to them.

“The care available to kidney patients was designed by and for people who live close to cities. This automatically excludes people who live further away and in the bush.”

The report follows the Indigenous Patient Voices Symposium held during September in Darwin in conjunction with the 53rd Annual Scientific Meeting of the Australia and New Zealand Society of Nephrology (ANZSN).

Wendy Caccetta