Kwementyaye Charlie, an Aboriginal man who Guardian Australia reported in February was forced to sleep rough while undergoing dialysis treatment in Alice Springs, has died in Broome.

Charlie was well-known, well-travelled and a talented artist. He was also a “cranky, charismatic and supersmart” man, who was frustrated with the life his illness had forced him into and often railed against the system that kept him alive but struggled to support him.

Related: Northern Territory moves to use $10m dialysis funding after years of delays

The 58-year-old had friends and family in many parts of the country, and when a woman close to him died in the remote town of Balgo, Charlie wanted to attend the funeral and traditional sorry business. But because Balgo had no dialysis service he was stuck in Alice Springs.

Piecing together accounts from friends, it appears this steeled Charlie’s resolve to visit his ex-wife and family in Broome, “by hook or by crook”, as one friend said, even though he was still on the end of a very long waiting list for the town’s Aboriginal dialysis clinic.

So one morning he got on a bus.

Dialysis patients are supposed to receive treatment about three times a week, but Charlie didn’t access any treatment with the at-capacity Broome dialysis clinic after he arrived about two days later. Not long after arriving he collapsed and died in the street.

Charlie’s death is now with the Broome coroner, who is waiting for toxicology, pathology and police reports before deciding on an inquiry.

While Charlie’s situation is not unique, or even unusual, those who knew him and who work in renal health say it illustrates a crisis in the Australian health system. With a rising number of patients, dialysis services aren’t sufficient outside big cities. Those who move to cities for treatment, however, find the support services are inadequate.

Guardian Australia met Charlie in February at Alice Springs’ Purple House, a not-for-profit dialysis clinic for Indigenous patients from remote communities. He had been forced to move to Alice Springs from his remote home of Kiwirrkurra where both dialysis chairs were in use.

He had been sleeping rough in the dry Todd River bed after he was evicted from his Aboriginal hostel due to behavioural problems and he was angry, humiliated and determined to get his story out. A photograph of him sitting beneath a tree, surrounded by belongings and with a tube still attached to his chest, spoke volumes.

“I’m sitting down [under] the tree, like a kangaroo or a dog,” he said of his camp. “No air-conditioning, no cold water.

“I’m from the bush. I’ve got no house, like the first time I’ve come to this town. It’s because I’ve got no kidney.”

The next day the Salvation Army homeless men’s shelter offered him a short-term bed, but it stretched to more than four months and the same problems which cropped up at the hostel were starting to threaten his stay at the shelter.

About a week after the death of his friend in Balgo, Charlie got on the bus to Broome.

Sarah Brown, chief executive of Purple House had tried to find Charlie when she learned he had left the Salvos shelter, but he’d already gone.

West Australian police told Guardian Australia that officers responded to a call on the morning of 4 July in Broome, about a man who had collapsed in the street. Fifty-eight-year-old Charlie had died.

The Broome clinic declined to talk about Charlie, but there is no suggestion of fault by medical services in his passing.

“It’s incredibly sad that he’s died, but part of the story is a man who felt like he had very little agency over his own life,” Brown tells Guardian Australia.

“He’s a man who, while on the face of it would appear to have little capacity to make decisions and follow through, decided he had to go to Broome and would risk his life to do it. That astounded people, even those who knew him well.”

Brown says Charlie’s story is not an easy one to tell and has many complications, but it is still important.

Hey mate, can you take my photo?

Several people have told Guardian Australia of their memories of Charlie, hoping that he is remembered as more than just another tragic statistic.

He claimed to be a boxer, according to photographer Tobias Titz, who won the 2012 Moran Prize with a portrait of Charlie. According to Titz, Charlie approached him at his studio when he was photographing artist Bobby West Tjupurrula and said, “hey mate, can you take my photo?”

“He was travelling with a band of people from Kiwirrkurra,” Titz says. “He didn’t play with them but was traveling with them.

“I was setting up my daylight studio and I’d taken a photo of [Tjupurrula] when Charlie came over to me and introduced himself.”

Titz says the conversation was “pretty brief” but he later tried to mail some prints to Kiwirrkurra. Charlie told Titz he had previously been a boxer, but not that he was an artist.

In fact, several people remember Charlie as a talented artist who began painting in 1980, and exhibited several times in Australian cities. His father, Timmy Payungka Tjapangati, was a well-known Papunya artist and a founding member of Papunya Tula Artists.

Dr John Carty, from the Australian National University’s centre for heritage and museum studies, had recently come to know Charlie well.

“I’d been trying to track him down for a decade to talk about some of his early Balgo paintings,” he says.

He was an extraordinary bloke. He was cranky and charismatic and supersmart. He knew what the deal was. He made choices.

John Carty, ANU centre for heritage and museum studies

“[Charlie] was an extraordinary young artist, a brave painter exploring the boundaries of his culture and its interface with a changing world, yet his work remains absolutely invisible in our art history. It’s important to ensure his life doesn’t remain invisible in other ways.”

Carty had seen Charlie frequently in recent weeks, while he was in Alice Springs working on a book with Purple House.

“He was an extraordinary bloke,” Carty says. “He was cranky and charismatic and supersmart. He knew what the deal was. He made choices.

“He had his own issues and made it difficult for himself. He wasn’t an angel. But the indignity of being sick and knowing why you’re sick and wanting to be home with your family and not being able to do it, that’s not even a racial situation. That’s poverty and disadvantage, and you can tell that story about any group of people.”

Of Charlie’s final journey, Carty says the determination to get to Broome despite the health risks “tells you something about the man”.

“It also tells you something about the problem dialysis patients face in general,” he says. “Dialysis in town saves your life but takes you away from your life.

“For a lot of desert people, I know the risk – to be back with family, to get back home – is worth it. But it’s not a choice people should have to make.”

Patient numbers are rising daily

There are not enough dialysis units outside major city centres, despite the need for them increasing daily. In cities, there is a lack of support for people who come in from remote regions and communities. For those who travel vast distances, there is inadequate accommodation and support services when they arrive.

According to Kidney Health Australia, Indigenous people are more than four times more likely than non-Indigenous people to have stage-four or stage-five kidney disease and almost four times as likely to die from chronic kidney disease.

In remote areas end-stage kidney disease is 18 to 20 times higher for Indigenous people. The Kimberley, where Charlie was headed, has the country’s largest population of people with renal disease.

Jenny Cutter, Kimberley Renal Services (KRS) manager, declined to talk about Charlie, but outlined the enormous pressure on services in the region.

She said there are about 1,500 people with some form of renal disease in the Kimberley and the number is rising daily. There are nowhere near enough dialysis chairs for all of them.

Funding is applied for each year.

The Kimberley Aboriginal Medical Services Council (KAMSC) dialysis clinic in Broome has 10 chairs operating constantly at full capacity with 40 patients.

Another 10 chairs are funded for 36 patients in Derby, and six for 21 patients in Kununurra. Seven additional places in both sites will be funded by the West Australian government from July next year and another two chairs have been proposed for Fitzroy Crossing. It’s not enough though, and KRS has requested an increase.

“The patients we have at the moment, especially in Broome, have been there for about 10 years and we look after them very well,” Cutter says.

“They’re young people and will potentially be on dialysis for another 30 years – they’re not moving.”

This means as more people reach the end stage of their illness, they will have to go elsewhere for dialysis.

When a Kimberley patient needs it, they are sent directly to Perth hospital and placed on a waiting list for a chair closer to home. The waiting list averages about one year, but has been up to five or six years in the past.

“We know on our list of pre-dialysis patients we have 95 people who will end up on dialysis in the next 12 to 18 months, and they’ll have to go to Perth because we don’t have the capacity to dialyse,” says Cutter.

“There’s an Aboriginal liaison officer at Royal Perth but this is one person and they’re stretched, so we’re starting to provide that service and check in with the patients.”

KAMSC’s non-Indigenous patients probably have it even tougher – there is no dedicated accommodation support in Perth.

Cutter said it’s a desperate situation for some patients who don’t speak much English and are alone away from their families while on the waiting list in Perth.

She says if another clinic calls with a patient in need of a place, they will do their best to accommodate them, but “we’ve got a waiting list of patients desperate to come home, and you’ve got to weigh that up against somebody else’s patient who is being dialysed well.”

Cutter says the problem goes beyond just needing more dialysis chairs, because remote and regional Australia also needs qualified staff to operate such facilities and remote health jobs have a high turnover rate. Other models of health care are being looked at and KAMSC is hoping to win a contract to provide support for at-home dialysis services in the Kimberley.

The powerful pull of country

The same problems stretch across borders. Sarah Brown’s clinic, the Purple House, cares for people who have come to Alice Springs from remote central Australian communities and she says just the move into another Indigenous country alone creates cultural complications.

“Traditionally, you’d only visit someone else’s country if you were invited and could bring a gift or if you were having some kind of conflict with that group,” she says.

“So to be here, uninvited, due to circumstances that mean you have to be here to live, causes people an inordinate amount of shame.”

More dialysis units on country would have enormous social, cultural, health and economic benefits, she says.

Related: Dialysis patient forced to sleep rough in Alice Springs as funding cuts bite

A 2006 report by the George institute of public health projected that an increase in home-based therapies introduced over five years would lead to savings of between $378m and $430m.

“It is reasonable to assume that there would also be improvements in quality of life resulting from these changes,” the report said.

Brown agrees.

“It’s reasonable to say the accommodation and interpreter costs, as well as the fact that people away from their country are sicker and in hospital more, adds significantly to the costs.

“Where there isn’t dialysis in communities, people are making decisions that affect their health all the time because it is so important to their wellbeing and that of their families to be on country for ceremony, sorry business, funerals, grandkids’ birthdays – all those important things people really value.”

Brown says Purple House has seen elderly patients with wheeled walkers travel 12 hours on a bus back home for a grandchild’s birthday, and return the next day to ensure they don’t miss a dialysis session.

“People understand it’s important to have dialysis, but the pull to continue to be part of the family and to participate in family life often is a bigger pull than their own physical health,” she says.

The pull to continue to participate in family life often is a bigger pull than their physical health.

Sarah Brown, Purple House

The Northern Territory this year submitted a proposal to the federal government to spend $10m to provide accommodation services in Tennant Creek and Alice Springs for patients from remote communities coming into town for dialysis.

It’s expected the federal government will announce its decision in the near future, and there is hope of further funding for remote dialysis units after extensive lobbying by Brown and others.

All of it is too late to assist Charlie and the many others in similar situations.

“If there had been more dialysis in Broome the likelihood is [Charlie] would have been able to have treatment there,” says Brown.

She adds that the people who do best in the system are those without challenging behaviour and who flex themselves and their lives to engage with the system.

“[Charlie] was never going to be one of those fellas,” she says.

“On some level there is a responsibility for health services to be able to suit the group of people who need them. [Charlie] was just a classic case of someone who didn’t play by the rules and wasn’t always polite and engaging and the system has difficulty providing services for those outliers.”

• The use of the forename Kwementyaye is in keeping with Indigenous cultural traditions for naming of the deceased, and the wishes of Charlie’s family.

...

Kwementyaye Charlie, an Aboriginal man who Guardian Australia reported in February was forced to sleep rough while undergoing dialysis treatment in Alice Springs, has died in Broome.

Charlie was well-known, well-travelled and a talented artist. He was also a “cranky, charismatic and supersmart” man, who was frustrated with the life his illness had forced him into and often railed against the system that kept him alive but struggled to support him.

Related: Northern Territory moves to use $10m dialysis funding after years of delays

The 58-year-old had friends and family in many parts of the country, and when a woman close to him died in the remote town of Balgo, Charlie wanted to attend the funeral and traditional sorry business. But because Balgo had no dialysis service he was stuck in Alice Springs.

Piecing together accounts from friends, it appears this steeled Charlie’s resolve to visit his ex-wife and family in Broome, “by hook or by crook”, as one friend said, even though he was still on the end of a very long waiting list for the town’s Aboriginal dialysis clinic.

So one morning he got on a bus.

Dialysis patients are supposed to receive treatment about three times a week, but Charlie didn’t access any treatment with the at-capacity Broome dialysis clinic after he arrived about two days later. Not long after arriving he collapsed and died in the street.

Charlie’s death is now with the Broome coroner, who is waiting for toxicology, pathology and police reports before deciding on an inquiry.

While Charlie’s situation is not unique, or even unusual, those who knew him and who work in renal health say it illustrates a crisis in the Australian health system. With a rising number of patients, dialysis services aren’t sufficient outside big cities. Those who move to cities for treatment, however, find the support services are inadequate.

Guardian Australia met Charlie in February at Alice Springs’ Purple House, a not-for-profit dialysis clinic for Indigenous patients from remote communities. He had been forced to move to Alice Springs from his remote home of Kiwirrkurra where both dialysis chairs were in use.

He had been sleeping rough in the dry Todd River bed after he was evicted from his Aboriginal hostel due to behavioural problems and he was angry, humiliated and determined to get his story out. A photograph of him sitting beneath a tree, surrounded by belongings and with a tube still attached to his chest, spoke volumes.

“I’m sitting down [under] the tree, like a kangaroo or a dog,” he said of his camp. “No air-conditioning, no cold water.

“I’m from the bush. I’ve got no house, like the first time I’ve come to this town. It’s because I’ve got no kidney.”

The next day the Salvation Army homeless men’s shelter offered him a short-term bed, but it stretched to more than four months and the same problems which cropped up at the hostel were starting to threaten his stay at the shelter.

About a week after the death of his friend in Balgo, Charlie got on the bus to Broome.

Sarah Brown, chief executive of Purple House had tried to find Charlie when she learned he had left the Salvos shelter, but he’d already gone.

West Australian police told Guardian Australia that officers responded to a call on the morning of 4 July in Broome, about a man who had collapsed in the street. Fifty-eight-year-old Charlie had died.

The Broome clinic declined to talk about Charlie, but there is no suggestion of fault by medical services in his passing.

“It’s incredibly sad that he’s died, but part of the story is a man who felt like he had very little agency over his own life,” Brown tells Guardian Australia.

“He’s a man who, while on the face of it would appear to have little capacity to make decisions and follow through, decided he had to go to Broome and would risk his life to do it. That astounded people, even those who knew him well.”

Brown says Charlie’s story is not an easy one to tell and has many complications, but it is still important.

Hey mate, can you take my photo?

Several people have told Guardian Australia of their memories of Charlie, hoping that he is remembered as more than just another tragic statistic.

He claimed to be a boxer, according to photographer Tobias Titz, who won the 2012 Moran Prize with a portrait of Charlie. According to Titz, Charlie approached him at his studio when he was photographing artist Bobby West Tjupurrula and said, “hey mate, can you take my photo?”

“He was travelling with a band of people from Kiwirrkurra,” Titz says. “He didn’t play with them but was traveling with them.

“I was setting up my daylight studio and I’d taken a photo of [Tjupurrula] when Noel Charlie came over to me and introduced himself.”

Titz says the conversation was “pretty brief” but he later tried to mail some prints to Kiwirrkurra. Charlie told Titz he had previously been a boxer, but not that he was an artist.

In fact, several people remember Charlie as a talented artist who began painting in 1980, and exhibited several times in Australian cities. His father, Timmy Payungka Tjapangati, was a well-known Papunya artist and a founding member of Papunya Tula Artists.

Dr John Carty, from the Australian National University’s centre for heritage and museum studies, had recently come to know Charlie well.

“I’d been trying to track him down for a decade to talk about some of his early Balgo paintings,” he says.

He was an extraordinary bloke. He was cranky and charismatic and supersmart. He knew what the deal was. He made choices.

John Carty, ANU centre for heritage and museum studies

“Noel was an extraordinary young artist, a brave painter exploring the boundaries of his culture and its interface with a changing world, yet his work remains absolutely invisible in our art history. It’s important to ensure his life doesn’t remain invisible in other ways.”

Carty had seen Charlie frequently in recent weeks, while he was in Alice Springs working on a book with Purple House.

“He was an extraordinary bloke,” Carty says. “He was cranky and charismatic and supersmart. He knew what the deal was. He made choices.

“He had his own issues and made it difficult for himself. He wasn’t an angel. But the indignity of being sick and knowing why you’re sick and wanting to be home with your family and not being able to do it, that’s not even a racial situation. That’s poverty and disadvantage, and you can tell that story about any group of people.”

Of Charlie’s final journey, Carty says the determination to get to Broome despite the health risks “tells you something about the man”.

“It also tells you something about the problem dialysis patients face in general,” he says. “Dialysis in town saves your life but takes you away from your life.

“For a lot of desert people, I know the risk – to be back with family, to get back home – is worth it. But it’s not a choice people should have to make.”

Patient numbers are rising daily

There are not enough dialysis units outside major city centres, despite the need for them increasing daily. In cities, there is a lack of support for people who come in from remote regions and communities. For those who travel vast distances, there is inadequate accommodation and support services when they arrive.

According to Kidney Health Australia, Indigenous people are more than four times more likely than non-Indigenous people to have stage-four or stage-five kidney disease and almost four times as likely to die from chronic kidney disease.

In remote areas end-stage kidney disease is 18 to 20 times higher for Indigenous people. The Kimberley, where Charlie was headed, has the country’s largest population of people with renal disease.

Jenny Cutter, Kimberley Renal Services (KRS) manager, declined to talk about Charlie, but outlined the enormous pressure on services in the region.

She said there are about 1,500 people with some form of renal disease in the Kimberley and the number is rising daily. There are nowhere near enough dialysis chairs for all of them.

Funding is applied for each year.

The Kimberley Aboriginal Medical Services Council (KAMSC) dialysis clinic in Broome has 10 chairs operating constantly at full capacity with 40 patients.

Another 10 chairs are funded for 36 patients in Derby, and six for 21 patients in Kununurra. Seven additional places in both sites will be funded by the West Australian government from July next year and another two chairs have been proposed for Fitzroy Crossing. It’s not enough though, and KRS has requested an increase.

“The patients we have at the moment, especially in Broome, have been there for about 10 years and we look after them very well,” Cutter says.

“They’re young people and will potentially be on dialysis for another 30 years – they’re not moving.”

This means as more people reach the end stage of their illness, they will have to go elsewhere for dialysis.

When a Kimberley patient needs it, they are sent directly to Perth hospital and placed on a waiting list for a chair closer to home. The waiting list averages about one year, but has been up to five or six years in the past.

“We know on our list of pre-dialysis patients we have 95 people who will end up on dialysis in the next 12 to 18 months, and they’ll have to go to Perth because we don’t have the capacity to dialyse,” says Cutter.

“There’s an Aboriginal liaison officer at Royal Perth but this is one person and they’re stretched, so we’re starting to provide that service and check in with the patients.”

KAMSC’s non-Indigenous patients probably have it even tougher – there is no dedicated accommodation support in Perth.

Cutter said it’s a desperate situation for some patients who don’t speak much English and are alone away from their families while on the waiting list in Perth.

She says if another clinic calls with a patient in need of a place, they will do their best to accommodate them, but “we’ve got a waiting list of patients desperate to come home, and you’ve got to weigh that up against somebody else’s patient who is being dialysed well.”

Cutter says the problem goes beyond just needing more dialysis chairs, because remote and regional Australia also needs qualified staff to operate such facilities and remote health jobs have a high turnover rate. Other models of health care are being looked at and KAMSC is hoping to win a contract to provide support for at-home dialysis services in the Kimberley.

The powerful pull of country

The same problems stretch across borders. Sarah Brown’s clinic, the Purple House, cares for people who have come to Alice Springs from remote central Australian communities and she says just the move into another Indigenous country alone creates cultural complications.

“Traditionally, you’d only visit someone else’s country if you were invited and could bring a gift or if you were having some kind of conflict with that group,” she says.

“So to be here, uninvited, due to circumstances that mean you have to be here to live, causes people an inordinate amount of shame.”

More dialysis units on country would have enormous social, cultural, health and economic benefits, she says.

Related: Dialysis patient forced to sleep rough in Alice Springs as funding cuts bite

A 2006 report by the George institute of public health projected that an increase in home-based therapies introduced over five years would lead to savings of between $378m and $430m.

“It is reasonable to assume that there would also be improvements in quality of life resulting from these changes,” the report said.

Brown agrees.

“It’s reasonable to say the accommodation and interpreter costs, as well as the fact that people away from their country are sicker and in hospital more, adds significantly to the costs.

“Where there isn’t dialysis in communities, people are making decisions that affect their health all the time because it is so important to their wellbeing and that of their families to be on country for ceremony, sorry business, funerals, grandkids’ birthdays – all those important things people really value.”

Brown says Purple House has seen elderly patients with wheeled walkers travel 12 hours on a bus back home for a grandchild’s birthday, and return the next day to ensure they don’t miss a dialysis session.

“People understand it’s important to have dialysis, but the pull to continue to be part of the family and to participate in family life often is a bigger pull than their own physical health,” she says.

The pull to continue to participate in family life often is a bigger pull than their physical health.

Sarah Brown, Purple House

The Northern Territory this year submitted a proposal to the federal government to spend $10m to provide accommodation services in Tennant Creek and Alice Springs for patients from remote communities coming into town for dialysis.

It’s expected the federal government will announce its decision in the near future, and there is hope of further funding for remote dialysis units after extensive lobbying by Brown and others.

All of it is too late to assist Charlie and the many others in similar situations.

“If there had been more dialysis in Broome the likelihood is [Charlie] would have been able to have treatment there,” says Brown.

She adds that the people who do best in the system are those without challenging behaviour and who flex themselves and their lives to engage with the system.

“Noel was never going to be one of those fellas,” she says.

“On some level there is a responsibility for health services to be able to suit the group of people who need them. Noel was just a classic case of someone who didn’t play by the rules and wasn’t always polite and engaging and the system has difficulty providing services for those outliers.”

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