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.
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.
This story first appeared on the Sydney Morning Herald.