Tag Archives: Kidney Disease

NACCHO Aboriginal Health @KidneyHealth : Download @MenziesResearch Indigenous Australians travelling 1000 kilometres for kidney dialysis: report

 

 

” 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.

In a new Menzies School of Health Research report, patients and carers from across northern and central Australia called on state, territory and federal government health ministers to overhaul the system to provide more holistic care.”

Download Report Here

Menzies IPV_REPORT_FINAL_09112017

Report lead author Dr Jaquelyne Hughes says the current model meets medical needs, but missed the mark in helping indigenous people feel connected to their country, families and culture.

“We heard, overwhelmingly, of how people felt lonely, distressed and isolated following relocation to access treatment,” Dr Hughes said.

Some patients reported homelessness and desperation because of this disconnect, describing having to stay in the long grass when Darwin hostels are booked out.

A Torres Strait Islander said many sick people are forced to travel up to 1000 kilometres to Cairns and Townsville to receive dialysis.

“And they cry, their tears are running, because they want to go back home, they miss their families, they miss the lifestyle of the islands, because they are islanders,” the patient said.

Many noted the disease can fracture communities as elders become ill and are relocated together with their relatives, who miss out on cultural obligations and suffer disruptions to education and employment.

“We want them (the elders) to stay in communities. They are the old people; they have to hold country and family together for us,” one patient said.

“Families living in Darwin (for dialysis) are missing out on ceremonies, funerals and other important stuff,” another person said.

Dr Hughes said the only type of care available to most indigenous renal failure sufferers was designed by and for people in cities at the expense of those in the bush.

MENZIES Press Release

Indigenous people with kidney disease living in remote and rural Australia as well as their support networks have made a resounding call for equitable health care closer to home in a report released today by Menzies School of Health Research (Menzies).

In the ‘Indigenous Patient Voices: Gathering Perspectives, Finding Solutions for Chronic and End-Stage Kidney Disease’ 2017 symposium report, renal patients and carers from across northern and central Australia highlighted the need for more holistic care and services to be made available closer to home.

Report lead author Dr Jaquelyne Hughes said current health care systems met medical care needs, but missed the mark in helping Indigenous people feel connected to their country, communities and culture while they received treatment.

“We heard, overwhelmingly, of how people felt lonely, distressed and isolated following relocation to access treatment,” Dr Hughes said.

“Some patients reported homelessness and desperation because of this disconnect. They are not rejecting the desire to live well; they are rejecting the only model of care available to them.

“The care available to kidney patients was designed by and for people who live close to cities. This automatically excludes people who live further away and in the bush.”

The report follows the Indigenous Patient Voices Symposium held during September in Darwin in conjunction with the 53rd Annual Scientific Meeting of the Australia and New Zealand Society of Nephrology (ANZSN).

Dr Hughes is one of many health practitioners urging the Australian state, territory and federal government health ministers to respond to this call to action.

“Consumer engagement is a national priority of Australian health services, and the symposium showed many Aboriginal and Torres Strait Islander people are willing to provide feedback to support the necessary health care transformation,” she said.

“We’ve highlighted the patient-reported barriers to accessing quality services for chronic and end-stage kidney disease, how and where services are delivered, how information is communicated and developing pathways and career opportunities for Indigenous Australians within the renal health care workforce.”

The report is available via the Menzies website at http://bit.ly/2znSx7d.

The Indigenous Patients’ Voices Symposium was supported by Kidney Health Australia, Astellas Pharma Australia and Novartis Pharmaceuticals Australia.

 

 

 

NACCHO Aboriginal Health : Tributes to Dr G Yunupingu and Mr Yami Lester – Men without sight but not without a vision

 

“ Not far from that creek crossing, at Maralinga, when Yami Lester was a 12-year-old, the British government, in collusion with our Australian government, exploded a series of atomic weapons.

A black mist rolled over their lands, hurting the eyes of this young boy. After a relatively short period of time he became blind.

At his funeral service, we were moved by the singing of Paul Kelly, whose song Maralinga told the story of Mr Lester.

Paul Kelly also worked with the second blind man I wish to commemorate today, Dr G Yunupingu, who brought his beautiful, ethereal voice, in his Yolngu language, to people across the world.

Both men died, in part, due to kidney disease.

Dr Yunupingu had suffered from liver and kidney diseases for many years. He was just 46 years of age. Mr Lester died from end-stage renal failure.”

Extracts from Senator DODSON (Western Australia) Senate Tribute in full Part 2

Picture above from  : Yami Lester: More than 500 people travel to South Australia’s far north for leader’s funeral  : Image and full name used with Permission from family

 ” Dr G Yunupingu ‘s uncle, senior Gumatj elder Djunga Djunga Yunupingu, is reported to have told the crowd at the National Indigenous Awards last week that Dr G Yunupingu ‘built a bridge between Indigenous and non- Indigenous Australia with his music.

Both Yolngu and Balanda walking together hand in hand—two laws, two people, one country.’

These words speak to the moving and reconciling impact of the life Dr G Yunupingu lived, which, sadly, was all too short.

The coalition government and this parliament recognise kidney disease as an important health condition impacting too greatly on our first Australians. Recognising this, we have invested in significant renal services, including dialysis, and we will continue to push for improved services for Territorians.

Dr G Yunupingu’s achievements over his life have left a legacy in the music industry. He will remain one of Australia’s most treasured music artists, described by the Prime Minister as a remarkable Australian who shared Yolngu language with the world through music.

Extracts from Senator Scullion (Northern Territory ) Senate tribute Part 1 Below

 ” We owe him (Mr Lester)  a great debt because he faced adversity with understated courage, with humility, with humour, with great strength.

In a world without nuclear threats and risks Mr Lester would have been a great stockman. In a world with nuclear threats and risks he would crack his whip loud, hard, sharp and constant to sound a different alarm.

Mr Lester made it part of his life’s work to fight for people affected by nuclear testing and to campaign for Indigenous land rights, and we’ve just heard today what a success he made of that and what a difference he made.

Vale, Mr Lester, and our condolences go out to his family and friends.

I was at Garma just a couple of weeks ago, where his legacy was celebrated and his passing very strongly felt.

You could feel it everywhere over the weekend at the time of Garma.

I just want to add, very briefly, to the comments that Senator Dodson just made around kidney disease and the need to address kidney disease in this country, given the impact it has had on these two great Aboriginal Australians.”

Extracts Senator SIEWERT (Western Australia ) senate Tribute in full Part 3 Below

Part 1 Full Text  Senator SCULLION: I move:

That the Senate records its sincere condolences at the deaths, on 21 July 2017 of Mr Kunmanara Lester OAM, and on 25 July 2017 of Dr G Yunupingu, places on record its gratitude and admiration for their service to the nation, and tenders its profound sympathy to their family and community in their bereavement.

I rise on behalf of the coalition government to pay respects and provide sincere condolences to the families, friends and communities of two remarkable men, two First Australians, who have each made such a difference to the nation through their own respective life paths.

Today the Senate pays respects to the outstanding and remarkable contributions of Dr G Yunupingu and Mr Yami Lester. Perhaps what is most striking is that both of these men lived a life without sight, but certainly not without insight and vision, for these two men saw and strived for a better future for their people using both words and action.

I was incredibly saddened by the news of Dr G Yunupingu’s passing, having had the delight of spending time with him in very different circumstances to most people, on his country.

In my previous life as a commercial fisherman, I and my young family at the time spent many years around Dr G Yunupingu’s country, around his home, particularly on the northern end of Elcho Island.

I consider myself blessed to have been able to know this man on his country, when many would see he was most himself.

In fact, I learned that, despite being born blind, Mr G Yunupingu was a great optimist and a man who made the best of everything.

He was a hero of his people and his community and a champion of the Indigenous music industry.

In fact, he was a champion of the Australian music industry, taking Indigenous music and Australian culture to the world.

Learning to play the guitar from an early age, Dr G Yunupingu joined the acclaimed Yothu Yindi band as a teenager.

This band changed the Australian music industry for the better and, more importantly, changed the psyche of our nation through its thought-provoking songs and powerful lyrics.

This music compelled you to listen.

It was music that made all who heard it stop and listen, to listen and learn.

Dr G Yunupingu ‘s uncle, senior Gumatj elder Djunga Djunga Yunupingu, is reported to have told the crowd at the National Indigenous Awards last week that Dr G Yunupingu ‘built a bridge between Indigenous and non- Indigenous Australia with his music.

Both Yolngu and Balanda walking together hand in hand—two laws, two people, one country.’

These words speak to the moving and reconciling impact of the life Dr G Yunupingu lived, which, sadly, was all too short.

The coalition government and this parliament recognise kidney disease as an important health condition impacting too greatly on our first Australians. Recognising this, we have invested in significant renal services, including dialysis, and we will continue to push for improved services for Territorians.

Dr G Yunupingu’s achievements over his life have left a legacy in the music industry. He will remain one of Australia’s most treasured music artists, described by the Prime Minister as a remarkable Australian who shared Yolngu language with the world through music.

Dr G Yunupingu stands among the many Yolngu leaders who have gone before him, including those who were signatories of the Yirrkala bark petitions that were tabled in Parliament this very week back in 1963. Family, friends, fellow Territorians, fans and followers will mark Dr G Yunupingu’s life and provide a final farewell on Tuesday, 19 September at the Darwin Convention Centre.

Today the Senate also provides its sincere condolences to the family and friends of Mr Yami Lester OAM, who passed away on 21 July 2017.

Born in the early 1940s in the APY Lands, on Granite Downs Station in the far north of South Australia, Yami, a Yankunytjatjara man, would go on to live a legacy of leadership that our country acknowledges with sincerity.

The stature of Mr Lester’s leadership was demonstrated in all he did, including as first chair of Pitjantjatjara Council, regional councillor, zone commissioner, driving force of the Institute of Aboriginal Development and chair of the Nganampa Health Council.

Mr Lester is a man who rose from personal tragedy. He was tragically blinded as a young man as a result of the black mist from the nuclear bomb test that blew through his homelands in South Australian when he was only a child. In the decades that followed, Mr Lester’s passion was to fight for justice and restoration for his people and rightful recognition.

He was courageous and persistent. He succeeded in delivering better outcomes for the community he served—for land rights, the health of his people, education, language and culture. He fought for a better future, better health, better education and better jobs.

In all of this, he demonstrated the power of his influence in bringing about major change.

At the state funeral, which I attended with my colleagues Senator Dodson and the member for Lingiari from the other place, I spoke with Mr Lester’s son, Leroy, who shared with me his father’s passion about improving school attendance in his own community.

Mr Lester knew the benefits education can bring not only to his people but to all Australians.

His record of achievement has left a legacy of better outcomes for his community, his people and his nation. Mr Lester advocated for the Pitjantjatjara land rights act. He was part of the historic handover of Uluru-Kata Tjuta, and we remember how he stood alongside Governor-General Sir Ninian Stephen in 1975 and interpreted speech.

He tirelessly advocated for the McMillan royal commission into the British nuclear test that later saw his people compensated.

Mr Lester’s leadership created a legacy that will not be forgotten. He will be remembered as a man of great strength, intelligence, courage and great kindness.

The Prime Minister has described Yami as an extraordinary Australian whose courageous life will be remembered forever.

Both Yami Lester and Dr G Yunupingu leave behind loving families and a nation that is better off for their contribution and worse off for their passing.

We the Australian government commemorate the remarkable lives they lived and pay respect to the legacy they leave. Vale Dr G Yunupingu and Yami Lester.

Part 2 Senator DODSON (Western Australia) :

Today I rise to commemorate the memory of two great Indigenous Australians who have passed since the last sitting of the Senate—Mr Yami (Kunmanara) Lester and Dr G Yunupingu, two blind Aboriginal men who had a vision for Australia. Despite their physical impairment they were far-seeing and insightful, and their lives give testament to their strength and resilience.

From humble beginnings in remote and isolated parts of our continent, one in the desert, the other in the saltwater country, they changed our nation for the better.

Of the two men, I knew Yami Lester the better.

I am proud to call him a friend, a leader and a mentor.

Last week, thanks to the generosity of the Minister for Indigenous Affairs, I was privileged to attend his state funeral in the remote South Australian community of Walatina.

Very few state funerals have occurred in a place so remote.

The hearse, a Land Cruiser embellished with flowers, stopped at a dry creek crossing.

Senior women travelling with his body took the opportunity to point to the dry creek bed at Walkinytjanu, in the middle of the desert, where Mr Lester was born.

While we waited for the Governor, the Premier, the South Australian Minister for Aboriginal Affairs, the Leader of the Opposition and other dignitaries we had a chance to feel the power of the simple birthplace, under the gum trees in the red sand, at a soakage in the desert.

Not far from that creek crossing, at Maralinga, when Yami Lester was a 12-year-old, the British government, in collusion with our Australian government, exploded a series of atomic weapons.

A black mist rolled over their lands, hurting the eyes of this young boy. After a relatively short period of time he became blind.

He believed this was as a direct result of this evil mist. He spent six or so years in a home in Adelaide, where only a younger person spoke his language, Yankunytjatjara. He became a ‘broomologist’, as he used to say, making brooms in the Adelaide school for the blind.

As an adult, with his wife Lucy, he moved to Alice Springs, where I came to know him and learn from his wisdom and insight into life and politics.

He became a leader of Aboriginal organisations there. With the late Reverend Jim Downing he established the Institute for Aboriginal Development, promoting Aboriginal language and culture against the grain of assimilation and forced social and cultural change.

They developed practical measures to assist families living in poverty and worked to reduce infant mortality by helping people to understand the causes of poor health and disease.

I recall giving a speech in Alice Springs on a topic I’ve now forgotten.

Yami pulled me up in the middle of the speech and said words that I took to heart. He said: ‘You’re a smart young man but you have to make a picture book for me in your speech; you need to paint a picture, so that I can see what you are talking about!’.

He was a leader in the struggle to establish Aboriginal controlled and managed organisations in Central Australia; to get recognition of land rights in South Australia; to get Uluru and Kata-Tjuta National Parks returned to traditional owners; and to establish a royal commission into the Maralinga tests.

In all of these struggles his wisdom, courage, determination and commitment were tempered by a wicked and irrepressible sense of humor and an infectious delight in life.

He was a mad supporter of the Melbourne Football Club.

This man, who could not see, showed us a vision of a reconciled Australia and led us on that path.

To his family—Lucy, Leroy, Rosemary and Karina—we express our thanks to you for allowing him to share his time with so many of us.

We wish you well in your future. At his funeral service, we were moved by the singing of Paul Kelly, whose song Maralinga told the story of Mr Lester.

Paul Kelly also worked with the second blind man I wish to commemorate today, Dr G Yunupingu, who brought his beautiful, ethereal voice, in his Yolngu language, to people across the world.

He was born on Elcho Island in the Northern Territory. As his song says, ‘I was born blind. I don’t know why.’ Dr G Yunupingu grew up in Galiwinku, the settlement on Elcho Island, off the north coast of Australia, which is over 500 kilometres northeast of Darwin.

Being blind, he spent his youth with his family absorbed in the Methodist mission environment, and become immersed in the world of music. He was a member of the famous Yothu Yindi band, whose classic song Treaty still resonates today, and the Saltwater Band. It was his solo albums that brought him fame and worldwide acclaim.

His amazing voice was complemented by the cello playing of his collaborator, friend and translator, Michael Hohnen.

Dr G Yunupingu performed for Her Majesty the Queen and for President Barack Obama, but it was the way in which his songs and music brought Yolngu culture and ideas into the minds of so many Australians that is his great gift to us all.

Dr G Yunupingu’s uncle—as the minister has said—senior Gumatj leader David Djunga Djunga Yunupingu, told the crowd in Darwin that his nephew had built a bridge between Indigenous and non-Indigenous Australians with music, but died before the country was truly at peace. He said:

He left us without knowing his place in this nation, without knowing true unity for all Australians.

Both men died, in part, due to kidney disease.

Dr Yunupingu had suffered from liver and kidney diseases for many years. He was just 46 years of age. Mr Lester died from end-stage renal failure.

He made the choice not to move from his home in Walatinna to Alice Springs for dialysis, allowing the disease to take him on his home country.

We’ve lost two great Aboriginal Australians to the scourge of renal disease. In this place we must mark the passing of these great Australians by committing ourselves to doing more to eradicate this epidemic.

Part 3 Senator SIEWERT (Western Australia )

It was with great sadness that I learned of the passing within days of each other of Mr Lester and Mr G Yunupingu.

Both men have made such a great contribution to this country.

I should say that Scott Ludlam would like to be here today to talk about and share his condolences for Mr Lester, because he worked with Mr Lester and other anti-nuclear campaigners to get justice and to campaign against the nuclear industry.

I think it was very fitting, and I’m so pleased, that Mr Lester got to see the commitment to the expansion of the gold card to those affected by the nuclear tests, in the budget in May.

I’m really pleased that he got to see that because he campaigned for such a long time for justice, for the people who are affected by the radiation from the British nuclear tests in Maralinga.

At least he got to see that.

It is a shame that Scott isn’t here to also add to the condolences.

Mr Dave Sweeney, who is a very well-known antinuclear campaigner and who worked with Mr Lester for a very long time, said of his passing:

We owe him a great debt because he faced adversity with understated courage, with humility, with humour, with great strength.

In a world without nuclear threats and risks Mr Lester would have been a great stockman. In a world with nuclear threats and risks he would crack his whip loud, hard, sharp and constant to sound a different alarm.

Mr Lester made it part of his life’s work to fight for people affected by nuclear testing and to campaign for Indigenous land rights, and we’ve just heard today what a success he made of that and what a difference he made.

Vale, Mr Lester, and our condolences go out to his family and friends.

Mr G Yunupingu—what a huge contribution he made to Australia and the world, sharing his music with the world.

It was such beautiful music which made such strong statements, such heartfelt statements, and enabled people to understand his culture through his words and his music.

His music is a lasting contribution to this country.

I was at Garma just a couple of weeks ago, where his legacy was celebrated and his passing very strongly felt.

You could feel it everywhere over the weekend at the time of Garma.

I just want to add, very briefly, to the comments that Senator Dodson just made around kidney disease and the need to address kidney disease in this country, given the impact it has had on these two great Aboriginal Australians.

People are aware that this has been discussed extensively in this chamber, and we need to keep talking about it until it gets the attention that it needs and we stop the going backwards and forwards between the state and territories and the Commonwealth about who pays for what.

It absolutely needs to be addressed. The causes need to be addressed, so that we don’t get to the point where we need end-stage treatment such as dialysis.

These two men’s legacies will constantly remind us of that.

Vale, Dr G Yunupingu and, as I said, the Greens add their condolences to this motion. I should also say thank you to Minister Scullion and Senator Dodson who ensured that we do get to commemorate these two great men in this chamber.

The ACTING DEPUTY PRESIDENT: I now ask all senators to stand in silent support of the motion.

Question agreed to, honourable senators standing in their places.

NACCHO Aboriginal Kidney Health #NAIDOC2017 @KenWyattMP announces $6.3 million investment in family friendly housing for kidney patients

“ The recent Central Australia Renal Study identified accommodation as the greatest challenge to indigenous kidney patients moving to towns for dialysis,

After relocating, these patients and family members often ended up homeless, socially and culturally isolated, and in many instances having to live in town camps.

We acted promptly, prioritising housing to help solve these challenges for families already under immense financial and emotional pressure from this debilitating disease.

Now patients will be comfortably housed, within easy reach of clinical treatment.”

Indigenous Health Minister Ken Wyatt

A joint housing refurbishment project has delivered accessible, family friendly homes for Northern Territory renal patients.

Welcoming the completion of eight houses in Alice Springs and two in Tennant Creek, Indigenous Health Minister Ken Wyatt said collaboration between the Australian and Territory governments had yielded a win-win for some of the most vulnerable people in the NT.

Download Central Australia Renal Study  Report

Executive summary – Central Australia Renal Study

The Central Australia Renal Study was undertaken against the following background:

  • Increasing numbers of Aboriginal people in the Central Australia (CA) region requiring renal replacement therapy (RRT), predominantly in Alice Springs.
  • Recognition of the lack of culturally appropriate service options and, in particular, service options allowing treatment as close to home as possible.
  • Recognition that treatment may require relocation and, where it does, support needs to be provided for patients and families.
  • Concerns about the negative impact of a lack of culturally appropriate service options on treatment uptake.

The project

The Australian Government contributed $6.3 million to refit and modify the homes, after the NT Government provided the original houses.

Minister Wyatt said Central Australia accounted for more than 640 patients known to have chronic kidney disease stages 3, 4 or 5.

“The problem is particularly high in the NT, where kidney health complications among indigenous people are compounded by remoteness and challenging living conditions,” he said.

Federal Government Investment Indigenous Health

The Government was now investing $3.6 billion over four years from 2017-18 for the Indigenous Australians’ Health Program, an increase of $724 million compared with expenditure over the previous four years.

“Continued growth in the program will improve access to culturally appropriate, comprehensive primary health care for Indigenous Australians and address areas of critical need through targeted investments to close the gap,” Minister Wyatt said.

Background

The Central Australia Renal Study was a joint study by the Australian, Northern Territory, South Australian and Western Australian Governments to develop a range of feasible clinical service delivery models and care pathways to best meet (current and projected) needs for Aboriginal and Torres Strait Islander patients from remote communities requiring dialysis in Central Australia.

The study, funded by the Australian Government, assesses the current issues surrounding the delivery of renal services in Central Australia and takes account of stakeholder consultation and activity-based data.

The study was conducted by the George Institute for Global Health for the Commonwealth Department of Health and Ageing.

The study was commissioned to assess the current issues surrounding the delivery of renal services in Central Australia taking into account, stakeholder consultation and activity-based data. The findings were to inform policy recommendations on the most effective and feasible service delivery options and care pathways for Aboriginal and Torres Strait Islander peoples in need of renal services, including dialysis, and identify issues around the distribution of these services.

The Report of the Central Australia Renal Study consists of four sections:

Executive Summary – PDF 204 KB
Executive Summary (online)

Part 1: Key findings and Recommendations, and Part 2: Final Report – PDF 1316 KB
Part 1: Key findings and Recommendations, and Part 2: Final Report (online)

Part 3: Technical Report – PDF 1706 KB
Part 3: Technical Report (online)

Part 4: Technical Appendices – PDF 939 KB
Part 4: Technical Appendices (online)

 

NACCHO Aboriginal #Kidney Health #IGA2016 : Western Desert Dialysis mob take out major Indigenous Governance Award

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On Thursday night Western Desert Dialysis took out the top award at the 2016 Indigenous Governance Awards, announced at a ceremony in Sydney.

Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation, also known as Western Desert Dialysis.

Our mission is to improve the lives of people with renal failure, reunite families and reduce the incidence of kidney disease in our communities.

 Run by Aboriginal people for Aboriginal people and work to provide culturally appropriate dialysis services in remote communities, helping people to get home to country and family.

NACCHO chair Matthew Cooke on behalf of all 150 members congratulates Western Desert Dialysis  and all the finalists ( see list below )

Watch these videos here

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Western Desert Dialysis helping Indigenous people in ‘kidney disease capital of the world’ By Tom Maddocks    Photo above Kirstie Parker

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Photo: Western Desert Dialysis has treated some patients like Josephine Woods (R) for years. (ABC News: Tom Maddocks)

Morgan Hitchcock from Western Desert Dialysis does not mince words on why his organisation is so badly needed in Central Australia.

“This is the kidney disease capital of the world and Aboriginal people bear the burden the most,” he said.

Mr Hitchcock is the business manager at the charity, which sends out a mobile dialysis treatment centre, known as the Purple Truck, to those who need it in remote communities.

He knows better than most why it makes such a difference.

“We respect traditional treatment for sickness but we also adopt the best of Western medicine,” he said.

About the awards

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The Finalists

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Fears people could die without treatment

The Purple Truck Photo: The Purple Truck is the mobile dialysis unit that Western Desert Dialysis sends to remote communities. (Supplied: Western Desert Dialysis)

There is no cure for kidney disease, and the only reliable treatment is dialysis or a transplant. Patients with renal disease need treatment three times a week.

People develop kidney disease because of chronic diseases such as type-2 diabetes, which is rife among Aboriginal people.

Before the Western Desert Dialysis service was available, patients had to travel from remote communities to Alice Springs to get the vital treatment they needed.

For some it was a difficult trip and many feared they would die.

Now people know they can get help in their own communities from the mobile treatment centre.

The service began with the simple desire to get a dialysis machine to the remote Western Desert community of Kintore, on the border with Western Australia, but the idea grew into something much bigger.

Mr Hitchcock said the Federal Government did not initially believe the service would work and it would be a waste of money, but it defied the odds.

“It’s talking about something sad, talking about kidney disease, but then it’s also an inspiring story about the way Aboriginal people, people from the desert, got together, raised some money and started their own organisation,” Mr Hitchcock said.

“Government is on board now but the organisation started from nothing when government said they weren’t going to help.”

Group uses traditional and Western treatments

Morgan Hitchcock from Western Desert Dialysis
Photo: Morgan Hitchcock says Western Desert Dialysis respects traditional treatments. (ABC News: Tom Maddocks)

At the group’s main office in Alice Springs, known as Purple House, patients can access a doctor and social support services.

They can also see traditional healers, known as Ngangkaris, and use bush medicine.

Josephine Woods, who has been receiving dialysis treatment at Purple House for many years, said it was “good for people from different kinds of tribes”.

“Patients will be sent home if they get homesick to visit family, get treatment and come back to Alice Springs,” she said.

Ms Woods is also part of a consumer group of patients who regularly meet with service providers.

“It’s good to know about renal patients and how they treat them,” she said

Press Release

Reconciliation Australia in partnership with BHP Billiton Sustainable Communities, tonight revealed the winners of the Indigenous Governance Awards 2016 and celebrated the strength of Aboriginal and Torres Strait Islander-led organisations and projects across Australia.

Following a rigorous judging process, Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (Western Desert Dialysis) was selected as the winner of the Category A Award for incorporated organisations, while Murdi Paaki Regional Assembly (Murdi Paaki) was honoured as winner of the Category B Award for non-incorporated projects.

Commenting on Category A winner, Western Desert Dialysis, Chair of the Indigenous Governance Awards, Professor Mick Dodson, said: “It’s their humanity that stands out in their governance. They strike me as a family that really cares for every member of that family in the way they deliver services. Aboriginal culture has been wrapped around access to modern medicine and allows it to be administered in a holistic and culturally appropriate way.”

Category B winner Murdi Paaki’s success “Comes from the fact they’re made up of community members, which gives them power to advocate”, said Professor Dodson. “They show leadership, vision, and fearlessness, and they are practicing self-determination.”

A highly commended honour was awarded to Kanyirninpa Jukurrpa in Category A, for its work strengthening Martu people’s connection with Country and leadership capacity; and Ara Irititja in Category B, for its dedication to digitally archiving culturally significant materials from the APY Lands.

BHP Billiton Chief External Affairs Officer Geoff Healy said good governance is critical to BHP Billiton and it’s engagement with Indigenous peoples around the world.

“Good governance delivers better, more transparent and accountable decision making and builds confidence in organisations and their leadership.” Page | 2

“BHP Billiton has been proud to support the Indigenous Governance Awards since they began in 2005. These finalists are great examples of the benefits that flow when good governance standards are in place.” Mr Healy said.

The calibre of the finalist organisations from which the winners were selected was the most outstanding in the twelve-year history of the Awards.

“This was certainly the highest standard of finalists we’ve ever had. They’ve all got the administrative nuts and bolts of good governance in order and are taking innovative approaches to community leadership. Across the board, we have seen the governance of Aboriginal and Torres Strait Islander-led organisations improve exponentially and these finalists could teach non-Indigenous organisations many things about innovation and success”, reflected Professor Dodson.

Remarking on significance of the Awards, Professor Dodson said “It’s time that mainstream Australia takes notice of these outstanding organisations and projects, and adopts a new discourse focused on Aboriginal and Torres Strait Islander success.”

In total, $60,000 prize money will be distributed through the Awards. The winner in each category will receive $20,000, and the highly commended organisations will each be awarded $10,000. Additionally, all nine finalists will be partnered with a high profile corporate organisation for 12 months, which will provide mentoring and assistance in an area identified by the finalist.

– ENDS –

Winner biographies

Category A

Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation

Based in Alice Springs, Western Desert Dialysis is an Aboriginal community-controlled, not-for-profit organisation providing dialysis treatment and support services to Indigenous renal patients from remote communities in Northern and Western Australia. Their name means “making all families well”, and it recognises that people must be able to stay on Country, to look after and be looked after by their families. Their mission is to improve the lives of people with renal failure, reunite families, and reduce the incidence of kidney disease in their communities. Run by Aboriginal people for Aboriginal people, Western Desert dialysis works to provide culturally appropriate health care for people in remote communities, helping people to get home to Country and family.

Category B

Murdi Paaki Regional Assembly

The MPRA is the peak governance body for Indigenous people in the west, north-west and far west of NSW, made up of representatives of the 16 Indigenous communities, Murdi Paaki Aboriginal Young and Emerging Leaders and NSW Aboriginal Land Council Councillors from across the region. The Aboriginal population of the MP region at the time of the 2011 Census was 8,331 (considered to be an under-estimate), or 18% of a total population of 48,797. It is the peak body for engaging with Government at all levels, and for the myriad agencies of Government to engage with Aboriginal people of the region. The MPRA’s major role is enabling and requiring a more strategic emphasis on engagement, responsiveness, co-ordination and accountability of Government and non-government agencies and the programs they deliver to and with Indigenous people.

Highly commended biographies

Category A

Kanyirninpa Jukurrpa

Based in Newman, Western Australia, Kanyirninpa Jukurrpa (KJ) was established to help Martu look after their culture and heritage and to ensure that Martu’s ongoing connection with country would remain strong. KJ’s programs include an extensive ranger program in five communities, a leadership program, a return-to-country program and a program of diverse cultural knowledge management. Together, they have generated transformative change across the Martu communities. The outcomes span a wide range of social, cultural and economic benefits to both Martu and other stakeholders, such as the state and federal governments. Since its formation, KJ has grown to the point where it is the single biggest employer of Martu. One of the less tangible but equally important successes has been the reinstatement of cultural authority of the Martu Elders. They have an increased confidence in their ability to shape their future and have responded positively to the interest and commitment of younger Martu to learn and fulfil their cultural obligations.

Category B

Ara Irititja

Based in Adelaide, Ara Irititja’s goal is to create a sustainable, growing collection of historic and cultural multimedia material related to Aboriginal people from or on the APY Lands in SA, NT and WA and to repatriate it to communities across these lands. Ara Irititja also record cultural material for the archive and play an active role in ensuring that the archive can be accessed effectively in remote communities. Ara Irititja project is about the conservation of memory in a culture based on oral tradition. This is memory that goes beyond most cultural imaginations, back before the invention of writing, and many centuries before the Christian era. Every Anangu Elder carries a story — one that has been handed down through many generations and our project provides a platform for these stories to be told. Keeping Culture KMS not only conserves this knowledge — by photo, by video, by sound, by documentation — but also, by its nature it allows these stories to live. Most importantly, it allows them to live with the people to whom they belong.

Indigenous Governance Awards 2016 finalists Category A – Incorporated organisations Category B – Non-incorporated projects
 Kalyuku Ninti – Puntuku Ngurra Limited

 Mallee District Aboriginal Services (MDAS)

 Marninwarntikura Women’s Resource Centre

 Muru Mittigar Limited

 Tangentyere Council Aboriginal Corporation

 Warlpiri Youth Development Aboriginal Corporation (WYDAC)

 Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation

  

 Ara Irititja

 Murdi Paaki Regional Assembly

 

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This year’s theme:

Strengthening Our Future through Self Determination

 NACCHO Interim 3 day Program has been released

                       The dates are fast approaching – so register today
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NACCHO Health News Alert : Kidney disease: National taskforce needed to address health crisis among Indigenous people.

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Dialysis patient Didamain Uibo says she does not get homesick anymore, after more than three decades receiving treatment at a clinic far away from her community.

Key points:

  • More than 700 Indigenous people are on life-saving dialysis in the NT, experts warn
  • Expected to increase to 1,000 in next few years
  • Medical experts say national taskforce needed to address kidney health
  • Access to dialysis and affordable, healthy food in remote communities critical to prevention

There is no dialysis treatment available at Numbulwar – where Ms Uibo is from – a tiny remote community on the Gulf of Carpentaria in the Northern Territory, because the bore water supply is not suitable.

News report From ABC News

After a failed kidney transplant, Ms Uibo is continuing her treatment at the Nightcliff Renal Unit in Darwin three times a week.

“The nurse comes in, hooks us up on the machine, four and a half hours on the machine.

“As you can see, I’ve got a crossword puzzle to do and a tape with all my favourite songs that’s been recorded by my husband.”

Ms Uibo said most of the patients receiving dialysis at the unit were Indigenous people from communities across the Northern Territory.

“I know many of the patients here, there are some new ones,” she said.

“I’ve lost a few friends. Some of the Numbulwar patients were here. I miss them.”

Unlike many of the patients receiving treatment, Ms Uibo gets the opportunity to return home to Numbulwar occasionally for a short visit with family, but she has had to make Darwin her home.

Lunch box
Photo: Access to affordable, healthy food in remote communities is seen as critical to preventing the onset of kidney disease and diabetes. (Flickr: Amancay Maahs)

More than 700 Indigenous people in the Northern Territory need dialysis treatment to stay alive, according to the Menzies School of Health Research.

Professor Alan Cass, a kidney specialist with Menzies, said this figure would increase to more than 1,000 in the next few years.

“It’s many times higher than the rates amongst non-Indigenous Australians,” he said.

Kidney disease rates among Indigenous people are four to five times higher than the rates among non-Indigenous people and the illness affects Indigenous people at a younger age, Professor Cass said.

“Kidney disease affects people 20 to sometimes 30 years younger,” he said.

“These are people who we’re hoping will be in jobs, supporting families, so this has a fundamentally different impact amongst Aboriginal people.”

Access to healthy, affordable food ‘critical’

Professor Cass said the gap in life expectancy for Indigenous people in the Northern Territory remained large, despite some progress in health outcomes.

“I think we need to do more,” he said.

“Clearly in the Territory we face a major challenge.

We’re aware that 90 per cent of Indigenous Australian with signs of chronic kidney disease simply don’t know that they have it – that’s a startling figure

Professor Alan Cass, Menzies School of Health Research kidney specialist

“The burden of complex diseases – kidney, diabetes at a young age, and how it enmeshes with disadvantage, poor access to care for people who are in very remote areas.”

Ms Uibo wants more discussion about kidney failure and its implications in remote communities, along with access to dialysis at home, so people do not have to leave their families.

“It’s important to do that because otherwise they’ll be shocked, they’ll be going to Darwin away from family and home.

“Sometimes people don’t know what’s happening with their body.”

Doctor Christine Connors from Top End Health Services said some people in remote communities were choosing not to make the “huge shift” away from home for life-saving dialysis.

“Some people say no,” she said.

“Because most people need to come to Darwin or Alice Springs to commence dialysis before they can go back home and for some people that’s just an unacceptable burden, in terms of leaving family and being away and all of the issues that entails.”

Professor Cass said a “whole of system” approach to kidney health and access to affordable, healthy food in remote communities were critical to preventing the onset of kidney disease and diabetes.

“We need to consider initiatives where we make it easier for people to get access to vegetables, fruit, water, low-sugar soft drinks for example, so that we can reshape the diet.”

Ms Uibo said she could remember her grandmother pouring half a packet of sugar into meals she cooked, at a time when there was no education about the health impacts of sugary and salty foods.

“It would be easy for nutritionists to go out to community and start introducing what type of food should be eaten,” she said.

“Or in schools – start at school level and go up to the community as well.”

Luke Toy from Kidney Health Australia said a national taskforce on kidney disease – in partnership with Indigenous people in remote communities – was needed to address “fractured” health service delivery.

“The Northern Territory’s high rate is also indicative of what we’re seeing in the Kimberley, in the APY Lands and also in Far North Queensland,” he said.

“We’re aware that 90 per cent of Indigenous Australian with signs of chronic kidney disease simply don’t know that they have it – that’s a startling figure.

“Clearly we’ve got a long way to go.”

A spokesman for the Northern Territory Government said it was spending $48 million a year on kidney disease, with dialysis machines in 25 remote locations.

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Celebrating the 10th Anniversary of the Close the Gap Campaign for the governments of Australia to commit to achieving equality  for Indigenous people in the areas of health and  life expectancy within 25 years.

Response to this NACCHO media initiative has been nothing short of sensational, with feedback from around the country suggesting we really kicked a few positive goals for national Aboriginal health.

Thanks to all our supporters, most especially our advertisers, NACCHO’S Aboriginal Health News is here to stay.

We are now looking to all our members, programs and sector stakeholders for advertising, compelling articles, eye-catching images and commentary for inclusion in our next edition April 6

This 24-page newspaper is produced and distributed as an insert in the Koori Mail, circulating 14,000 full-colour print copies nationally via newsagents and subscriptions.

Our audited readership (Audit Bureau of Circulations) is 100,000 readers!

More info and rate card HERE