​​These recommendations and associated actions were developed at the 2025 Gathering, where consumers, carers, clinicians, and other stakeholders came together to identify priorities for change.

 

From the many recommendations raised, seven overarching themes emerged, reflecting the shared perspectives and lived experience of everyone who took part.

​​

​​

Aboriginal and Torres Strait Islander workforce and leadership​

Participants repeatedly emphasised the need to grow and support an Aboriginal and Torres Strait Islander workforce across clinical, community, and peer roles. This included calls for Patient Navigators, rural workforce development, and more Indigenous leadership in decision-making and governance structures. Indigenous Reference Groups were seen as vital, with support from consistent national coordination and long-term investment.

ACTIONS

• Strengthen and expand Indigenous Reference Groups to inform service delivery at every transplant unit (at a minimum)

• Create a national network, group, or committee that connects IRGs across the country

• Establish a national network or community of practice for Aboriginal health workers in kidney care

• Fund and embed roles for Aboriginal transplant educators, Patient Navigators, and cultural liaison officers in dialysis and transplant services

• Elevate the Indigenous health worker role to a senior leadership position, ensuring it is valued and visible

• Recruit more Aboriginal and Torres Strait Islander health workers across services, including in paediatric kidney care

• Partner with workforce agencies to train, mentor, and support regional staff working across the kidney care pathway​​​

​

​

Cultural safety and better communication​

A central concern was the lack of cultural safety within the health system. Participants called for place-based cultural safety training, better understanding of cultural practices and protocols, and tools like the Clinical Yarning Model to be embedded in practice.

ACTIONS

• Make cultural safety training mandatory in all services (e.g. annual in-person “Walking in Two Worlds” courses)

• Implement and standardise the Clinical Yarning model nationally across nephrology and transplant services

• Include First Nations clinicians in planning and delivery of clinical education and service models

• Address and report on institutional racism and ensure safe, culturally welcoming environments for patients and staff

​

​

Funding, structures, and reform​

Many discussions pointed to the need for sustainable funding to support programs, workforce initiatives, and wraparound care models. National coordination and planning were described as essential to avoid duplication and improve impact.

ACTIONS

• Establish a national body to represent Aboriginal and Torres Strait Islander people with kidney disease and transplantation

• Ensure funding transparency, so communities know how decisions are made and what is achieved

• Host regular national Gatherings to build capability, monitor progress, and share learning

• Create a national transplant scorecard to monitor and report outcomes by site and population group

• Develop and implement a national action plan for transplant equity with defined drivers and accountability – OR create and fund an implementation plan for Priority area 2 of the current National Strategy for Organ Donation, Retrieval, and Transplantation

• Collaborate with TSANZ, OTA, ANZSN, and governments to align funding, strategy, and implementation efforts

​​

​

Education and resources​

There was widespread support for culturally appropriate education resources that explain the transplant journey and broader kidney care pathway in clear, accessible formats. Resources should be co-designed, in-language, visual, and suitable for all ages. A centralised national hub was proposed to ensure access to up-to-date, reliable information for patients, carers, and clinicians.

ACTIONS

• Develop a minimum set of information that every patient being worked up or on the waitlist should receive, in language that is clear and understandable

• Create transplant education resources adaptable by each transplant unit, with patient videos as core components

• Work with NIKTT to develop and share culturally grounded and engaging pre- and post-transplant care resources

• Use NIKTT to coordinate national pooling of resources, sharing adaptable tools and templates across jurisdictions

• Use traffic light systems to explain kidney function and test results in a patient-friendly way

• Produce A–Z dialysis induction booklets that cover the full journey, including aftercare and warnings

• Translate resources into local languages and ensure accessibility for both patients and families

• Implement early education about transplant—before dialysis starts—and include culturally appropriate content for children and young people

​​

​

Access to care​

Participants spoke of the difficulties accessing early transplant workup, dental care, and specialist appointments. They proposed expanded mobile dialysis access (e.g. trucks), more dialysis chairs in community, and increased outreach clinic models for transplant assessment and workup.

ACTIONS

• Increase mobile dialysis trucks and increase dialysis chairs in rural and remote communities

• Fund and deliver home dialysis training and support to enable return to Country

• Provide transport assistance and accommodation support for patients travelling for treatment

• Support earlier transplant workup at CKD stage 4, including screening in schools and communities using outreach vans

• Ensure post-transplant support is available in regional areas​

​

​

Psychosocial, carer, and family support​

Attendees stressed the importance of respite services, counselling, and including carers as part of the care team. Mental health and emotional wellbeing were raised frequently, including during dialysis and post-transplant.

​​​​

​

Prevention, early intervention, and long-term care​

Participants strongly advocated for a whole-of-life approach to kidney care, from early prevention to long-term support post-transplant. Community-led screening programs, diabetes management, and school-based education were suggested strategies. Housing insecurity and post-transplant continuity of care were noted as significant barriers to maintaining health.​​​​​