” Remote Aboriginal Australians with kidney disease have demanded equitable access to life-saving treatment closer to home to prevent the removal of people from their traditional homelands.

In a new Menzies School of Health Research report, patients and carers from across northern and central Australia called on state, territory and federal government health ministers to overhaul the system to provide more holistic care.”

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Menzies IPV_REPORT_FINAL_09112017

Report lead author Dr Jaquelyne Hughes says the current model meets medical needs, but missed the mark in helping indigenous people feel connected to their country, families 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, describing having to stay in the long grass when Darwin hostels are booked out.

A Torres Strait Islander said many sick people are forced to travel up to 1000 kilometres to Cairns and Townsville to receive dialysis.

“And they cry, their tears are running, because they want to go back home, they miss their families, they miss the lifestyle of the islands, because they are islanders,” the patient said.

Many noted the disease can fracture communities as elders become ill and are relocated together with their relatives, who miss out on cultural obligations and suffer disruptions to education and employment.

“We want them (the elders) to stay in communities. They are the old people; they have to hold country and family together for us,” one patient said.

“Families living in Darwin (for dialysis) are missing out on ceremonies, funerals and other important stuff,” another person said.

Dr Hughes said the only type of care available to most indigenous renal failure sufferers was designed by and for people in cities at the expense of those in the bush.

MENZIES Press Release

Indigenous people with kidney disease living in remote and rural Australia as well as their support networks have made a resounding call for equitable health care closer to home in a report released today by Menzies School of Health Research (Menzies).

In the ‘Indigenous Patient Voices: Gathering Perspectives, Finding Solutions for Chronic and End-Stage Kidney Disease’ 2017 symposium report, renal patients and carers from across northern and central Australia highlighted the need for more holistic care and services to be made available closer to home.

Report lead author Dr Jaquelyne Hughes said current health care systems met medical care needs, but missed the mark in helping Indigenous people feel connected to their country, communities and culture while they received treatment.

“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).

Dr Hughes is one of many health practitioners urging the Australian state, territory and federal government health ministers to respond to this call to action.

“Consumer engagement is a national priority of Australian health services, and the symposium showed many Aboriginal and Torres Strait Islander people are willing to provide feedback to support the necessary health care transformation,” she said.

“We’ve highlighted the patient-reported barriers to accessing quality services for chronic and end-stage kidney disease, how and where services are delivered, how information is communicated and developing pathways and career opportunities for Indigenous Australians within the renal health care workforce.”

The report is available via the Menzies website at http://bit.ly/2znSx7d.

The Indigenous Patients’ Voices Symposium was supported by Kidney Health Australia, Astellas Pharma Australia and Novartis Pharmaceuticals Australia.