BUNDJALUNG Elder Patsy Bundjulahm (Butterfly) Nagas is concerned that the Northern Rivers is under-resourced for dialysis patients and that as our population ages the situation is going to get worse.
There are dialysis units at Lismore, Grafton, Tweed and Ballina hospitals, meaning patients from inland areas like Bonalbo, Tabulam, Drake, Urbenville and Malabugilmah face long distances to get treatment.
"Some Elders at Tabulam and Drake don't have their own transport, so they are forced to hitch a ride to Casino, then catch the dialysis cab to Lismore hospital, spend the day on the machine, then back to Tabulam, which means sometimes they don't get home until 1am in the morning," Aunty Patsy said. "At this stage they are drained by having been on dialysis, so some go to relations in Casino to sleep, then go home, pack up and do it again the day after.
"We definitely need machines in Casino and Kyogle."
Aunty Patsy is a member of the community reference advisory group that has been meeting for the past three years at the Casino Aboriginal Medical Service and does her own dialysis at home.
"We need a support group with the patients and also staff because we get depressed and lonely very quickly, like any chronic disease patients, but because you are tied to a machine you don't have a life," she said.
Liz Rix has been meeting with the group and is soon to present her PhD thesis on providing better dialysis services for Aboriginal patients in the Northern Rivers. She has also met with doctors, nursing staff and necrologists (kidney specialists) and is doing her research through the Sydney University School of Public Health.
Aunty Patsy said it would be helpful if medical staff had cross-cultural training, so they better understood how to help Aboriginal patients.
"What I would encourage is for more people to learn how to do home dialysis. The staff from the Ballina unit are beautiful and on call 24-7," she said. "If you can learn to do it at home, it means you get a bit of a life.
"What is needed is more prevention of chronic disease. We recently did a walk from Casino to Kyogle to support heart disease, cancer, diabetes and kidney disease.
"It's about having a proper diet and exercise."
Chief executive of the Northern NSW Local Health District, Chris Crawford said they had two strategies for helping people in outlying areas.
"One is enhanced services for home dialysis patients because home dialysis provides people with the very good dialysis. It means renal patients can dialysis in the comfort of their own home, either overnight or when it best fits in with their daily routine," he said.
Mr Crawford said they have increased the number of outreach nurses who are available to support people on home dialysis therapy.
The other strategy is education.
"Education is the key to preventing kidney disease. We have recruited a chronic kidney disease nurse practitioner and renal case managers to work with general practitioners and other medical and nursing services to improve awareness of kidney disease to help people with kidney disease look after them, so they hopefully will never need to go on a dialysis machine," Mr Crawford said.