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 organising committee, including Dr Paul Lawton, Dr William Majoni and Dr Jaqui 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, and 60 per cent worked in the nephrology health care industry.
Implications for policy and practice:
- 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:
Chief Investigators:
Project dates:
Funders:
- Kidney Health Australia
- Astellas Pharma
- Novartis Australia
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$440 million funding boost for vital health and medical research for all stages of life
$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.
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Senator reveals personal story of kidney disease
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.
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Sunday Territorian | Gift of life
Senator Malarndirri McCarthy discusses her kidney diseaese and treatment by Dr Paul Lawton
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SMH | Hope and healing
A new approach to treatment is helping Indigenous Australians fight kidney disease
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National review to investigate low Indigenous kidney transplant rates
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”.
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Feds unveil review of kidney process | NT News
The Federal Government is poised to announce an inquiry into indigenous access to kidney transplants.
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Indigenous Patient Voices May 2018 newsletter
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Indigenous Patient Voices February 2018 newsletter
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Indigenous Patient Voices December 2017 newsletter
We are pleased to provide an update of activities since the Indigenous Patient Voices Symposium, hosted on 6 September 2017.
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Fair access demanded for patients
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.
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Dr Jaqui Hughes interview, National TalkBlack
Kidney specialist, Dr Jaqui Hughes talks to National TalkBlack
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Kimberley patients forced to travel thousands of kilometres for essential dialysis training
A kidney health forum held in Darwin last week tabled the concerns of remote dialysis patients from Western Australia and the Northern Territory.
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ABC Online | Indigenous dialysis patients pushing for grassroots community health services
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.
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Indigenous voices to be heard
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.
- Hughes, J.T., Dembski, L., Kerrigan V., Majoni, S.W., Lawton, P.D., Cass, A.. (2017). Indigenous Patient Voices: Gathering Perspectives Finding Solutions for chronic and end stage kidney disease, 2017 Symposium Report. [online] Darwin: Menzies School of Health Research.
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