Mentors determined to raise awareness about kidney health
IN the Top End, a group of Aboriginal mentors are taking the lead on kidney health and reestablishing the Renal Advocacy Advisory Committee (RAAC) as an independent patient voice.
Lachlan Ross, Neil Wilkshire, Peter Henwood and Cedrina Algy all have lived experience of chronic kidney disease, dialysis treatment and kidney transplantation. They’ve been working as mentors through Panuku Purple House to support patients on their renal journeys.
The theme of World Kidney Day on 9 March 2023 was ‘kidney health for all’ and the mentors are bringing this theme to Indigenous communities in the NT.
With increasing rates of chronic kidney disease disproportionably impacting on Indigenous peoples, the mentors are committed to raising awareness about kidney health with a focus on prevention. It’s important work – diagnoses of kidney disease happen at a much younger age for Indigenous peoples, compared to non-Indigenous people. Higher rates of end-stage kidney disease, requiring dialysis, are also a problem – 3 to 4 times the national average.
Lachlan Ross, a Warlpiri Elder, explained, “Our mentor work should not just be about [kidney] transplant, it should be about preventing disease in the first place. Too many young ones with diabetes are ending up on dialysis; we need to stop it before it gets to that.” The Mentor team also support patients with kidney disease that are approaching dialysis.
The mentors see the importance of having a strong patient voice. It’s vital that people experiencing kidney disease provide input into kidney health policies and practices affecting them. The mentors led the first RAAC meeting last month where a group of patients from across the Top End identified and agreed upon key priorities for renal care.
Neil Wilkshire said the aim of restarting the RAAC was to “try to make it better for our people” who often face challenges in accessing care. The RAAC helps patients to advise the health service and advocate for change. They’ll host three RAAC meetings a year over the next three years with support from Menzies School of Health Research, Panuku Purple House and NT Renal Services.
Patients are driving the agenda for the RAAC and identifying their priorities. At the first meeting, Lachlan urged the patient group to share their stories about kidney health with their families and communities and told them. “Be strong, never let life go.”
This message, and the work of the Mentors and the RAAC, are central to ensuring kidney health for all.