Aims:

To learn from Aboriginal and Torres Strait Islander people about their experiences with health care for chronic and end stage kidney disease.  

Summary:

Darwin recently hosted the 53rd Annual Scientific Meeting of the Australia and New Zealand Society of Nephrology.  The local organizing committee, including Dr Lawton, Dr Majoni and Dr Hughes promoted the opportunity for Australian and New Zealand nephrologists to learn from patients.  This Inaugural Patients Voices Meeting promoted key issues for patients in Northern Australia.  Eighty two delegates participated in the meeting, including 60% working in the nephrology health care industry.  

Implications for policy and practice:
A number of areas were highlighted for improvement including:
  • Timely diagnosis of kidney disease and access to kidney supportive treatments 
  • A greater emphasis on enabling patients to live in their own homes with their own families whilst undertaking dialysis treatments.  
  • Information systems about kidney disease and how to access health care, 
  • Education, workforce and cultural safety reforms.
Our research has found: 
Patients welcomed the opportunity to participate in forums to reflect on health care.   Patients also recommended urgent reforms to health services for chronic and end stage kidney disease are needed in Northern Australia, and particularly for Aboriginal and Torres Strait Islander people.
 
Chief Investigators:
Project dates:
September 2017 - ongoing
Funders:
  • Kidney Health Australia
  • Astellas Pharma
  • Novartis Australia
  1. $440 million funding boost for vital health and medical research for all stages of life

    $440 million funding boost for vital health and medical research for all stages of life

    Date

    $6 million in research funding for three Indigenous health grants in the Northern Territory. This includes $2.5 million for an NHMRC Centre of Research Excellence at the Menzies School of Health Research to prevent and manage bronchiectasis, a lung disease which results in recurrent chest infections and is particularly common in Aboriginal and Torres Strait Islander people.

  2. Senator reveals personal story of kidney disease

    Senator reveals personal story of kidney disease

    Date

    Nephrologist at the Menzies School of Health Research, Paul Lawton, said his research team had been investigating key causes that dramatically impact upon remote Aboriginal communities.

  3. Sunday Territorian | Gift of life

    Sunday Territorian | Gift of life

    Date

    Senator Malarndirri McCarthy discusses her kidney diseaese and treatment by Dr Paul Lawton

  4. SMH | Hope and healing

    SMH | Hope and healing

    Date

    A new approach to treatment is helping Indigenous Australians fight kidney disease

  5. National review to investigate low Indigenous kidney transplant rates

    National review to investigate low Indigenous kidney transplant rates

    Date

    One of the members of the panel will be Dr Jaqui Hughes, Australia’s only Aboriginal and Torres Strait Islander nephrologist, based at the Royal Darwin Hospital and at the Menzies School of Health Research, who said the news of the inquiry was “really welcome”.

  6. Feds unveil review of kidney process | NT News

    Feds unveil review of kidney process | NT News

    Date

    The Federal Government is poised to announce an inquiry into indigenous access to kidney transplants.

  7. Indigenous Patient Voices May 2018 newsletter

    Indigenous Patient Voices May 2018 newsletter

    Date

  8. Indigenous Patient Voices February 2018 newsletter

    Indigenous Patient Voices February 2018 newsletter

    Date

  9. Indigenous Patient Voices December 2017 newsletter

    Indigenous Patient Voices December 2017 newsletter

    Date

    We are pleased to provide an update of activities since the Indigenous Patient Voices Symposium, hosted on 6 September 2017.

  10. Fair access demanded for patients

    Fair access demanded for patients

    Date

    KOORI MAIL | 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.

  11. Dr Jaqui Hughes interview, National TalkBlack

    Dr Jaqui Hughes interview, National TalkBlack

    Date

    Kidney specialist, Dr Jaqui Hughes talks to National TalkBlack

  12. Kimberley patients forced to travel thousands of kilometres for essential dialysis training

    Kimberley patients forced to travel thousands of kilometres for essential dialysis training

    Date

    A kidney health forum held in Darwin last week tabled the concerns of remote dialysis patients from Western Australia and the Northern Territory.

  13. ABC Online | Indigenous dialysis patients pushing for grassroots community health services

    ABC Online | Indigenous dialysis patients pushing for grassroots community health services

    Date

    Aboriginal dialysis patients say too many people are dying a lonely death away from their families, because they cannot be treated at home. In remote parts of Australia, patients whose kidneys are failing often have to leave their home communities to seek dialysis treatments in larger cities and towns.

  14. Indigenous voices to be heard

    Indigenous voices to be heard

    Date

    Indigenous people with end-stage kidney disease from across northern and central Australia will be sharing their stories at an upcoming kidney conference in the hope of effecting change.

1.  “Country heals you." Renal patients want treatment at home.

2. Renal patients want more education.

3. Renal patients ask for respect.

4. “We want to have treatment on our own country.” - David Croker