NACCHO Aboriginal Kidney Health #NIKTT #NIDTC2019 #ClosingTheGap #HaveYourSayCTG : Our CEO Pat Turner pays tribute to her Uncle Charlie Perkins in speech to the National Indigenous Dialysis and Transplantation Conference

 ” Every which way you look at renal disease in Aboriginal people, the only solutions that will work in the long term are those that are Aboriginal–led, culturally responsive, located in Aboriginal organisations and evaluated through an Aboriginal lens.

As I have described below, Danila Dilba and KAMS show you the proven capacity of community control to deliver results and accelerate outcomes for people with chronic renal disease.  

Both services have people sharing their experiences at this conference.  Keep an eye out for their presentations.

To our non-Indigenous supporters in the audience today, I believe these examples about HOW we want to work together will be inspiring. Please expand your discussions during the conference with a positive acknowledgement of community control, and the rights we have as Aboriginal and Torres Strait Islander peoples to shape our own destiny, to partner with you as equals in service delivery, and to be accountable. ” 

Pat Turner NACCHO CEO

Read all Aboriginal Kidney Health articles published by NACCHO

Read all 160 Aboriginal Health and Diabetes articles published by NACCHO 

Before I begin, I acknowledge the Arrernte people and their country on which we meet today.  As many of you may know, I am back home where I was born and feeling very much re-energised by the country that knows me so well, my family and friends.

This conference brings together both community and health care sectors.  A hugely diverse audience!   Your efforts at this conference will help shape a five-year National Indigenous Kidney Transplantation Strategy to be provided to the Commonwealth in 2020.

With this conference mandate, I hope you will permit me to reflect on the WHY, the HOW and the WHEN of what we are all trying to achieve together.

The WHY is both personal and professional for me.

At the time of his death in 2000 from renal complications, one of my uncles had been the longest living Australian kidney transplant recipient.

And my uncle had been many other ‘firsts’ in his life.  For example:

  • The first Aboriginal person to graduate with a university degree
  • The first Aboriginal person to play soccer at elite level

and

  • The first Aboriginal person to be the permanent head of an Australian government department.

My uncle’s name?  Charlie Perkins.

His transplant in 1972 – the year he arrived in Canberra for the Tent Embassy  – gave my uncle another 28 years of life.

Instead of dying at 36 years of age, he died nearly three decades later at 64.

Imagine if his life had been cut short at 36, which is what would have happened without his renal transplant.

In the words of then Senator Aiden Ridgeway in the Senate chamber in October 2000  about my uncle: “we would not have had his contribution to the life of the nation”.

Dying in his mid-thirties would have been a tragic loss for the country.  BUT, it would ALSO have been a tragic personal loss for uncle’s family, including me, and his communities.   It would have robbed us of someone we loved far too soon.

Every Aboriginal and Torres Strait Islander person whose life you save is just as important  to their family and community as my uncle was to me and mine.

While each one may not have the same national profile as Charlie Perkins, each person has a life with meaning and importance.

The old man you treated last week could be a respected cultural boss, a law man, an esteemed knowledge holder in his own community.

The young woman you treat next week could be on her own journey to become a healer, an artist or elder in her own right, as her community ordains.

The next 20 year-old your efforts engage in renal health could be Australia’s first Aboriginal Prime Minister, or the Chancellor of Australia’s first Indigenous university or our 1000th Aboriginal doctor.

You never know.  You must take the long view.

Every premature death from preventable renal disease inflicts a shortfall in community capacity and resilience: now and in the future.

Every funeral adds to our intergenerational trauma, our collective loss and our … exhaustion!  We have plenty of reserves  — history shows my people always manage to bounce back.  BUT the preventable toll of chronic renal disease must stop.

So there it is.  The WHY is huge!

Because of this WHY, let me now share a few ideas about HOW.

My first example comes from Danila Dilba Health Service in Darwin. 

Data points taken over a ten-year period provided Danila Dilba with unique insights about the management and disease trajectory of people with chronic renal disease before and after the appointment of a Renal Case Manager to their team.   Creating this Renal Case Manager position specifically aimed to delay progression of their clients to end-stage kidney disease.

Danila Dilba recruited this new position in early 2008.   With this new role, all members of the primary healthcare team were to be supported through the provision of systematic patient monitoring, and access to the latest advice about evidence-based practice for very complex clinical challenges.  As a learning organization, Danila Dilba also committed to an independent evaluation of these service changes.

Before this new role, there were clear gaps in care that needed improving.  For example:

  • Documentation in the electronic clinical record system.  Only 60% of patients were identified with their diagnosis.
  • Screening of ‘at risk’ patients was very low. Although there were over 500 patients with diabetes for example, few of these had been screened for chronic renal disease.
  • There was underuse of the GP management plan.  Only 63% of patients had a current plan. Only 14% of these contained self-management goals.  Only 26% contained clinical goals.

Using the ten-year data, this independent evaluation documented convincing improvements. The evaluation showed that Danila Dilba increased screening and monitoring of people under their care with Stage 3 to 5 chronic renal disease.

Prompt access to expert knowledge at the tertiary level also increased the organisation’s competence to recognise and effectively manage patients with chronic renal disease and associated complex comorbidities.

BUT the risk of tertiary renal services taking over the management of people to the exclusion of their other health priorities was avoided.

There was a significant increase in the timely identification of people in Stage 3 rather than the later, more difficult stages of chronic renal disease.  In fact, the patient numbers with Stage 3 grew from fifteen to 101 patients. The growth in the number of people in Stages 4 and 5 was less dramatic in absolute numbers, but a positive improvement was shown.  There was an increase in clinic visits for people with more advanced disease and, overall, improved management of risk factors.

As a result of this initiative, those patients with both renal disease and diabetes were better managed in terms of meeting agreed evidence-based targets for diabetes control.

At Danila Dilba, the proportion of patients meeting specific clinical targets for their care has sat above 90% consistently since 2012. Indeed, management of patients with diabetes has been above average since these data audits commenced.  There was a very welcome stabilization of diabetes control for those with Stage 5 renal disease.  This is fantastic for the patient’s wellbeing.

Of course, you’ll also be asking whether this increased service output delayed progression of chronic renal disease!

Before the program, 50% of patients ended up with Stage 5 within two and half years of identification.  After the program, progression had slowed down dramatically.  Rather than two and half years, the time it took to progress had extended out to four years.  This represents a significant delay in disease progression.  I find these results very positive.  In my mind, the rate of progression seems to have been nearly halved.  My congratulations to the team.

Overall, this experience has helped shift Danila Dilba to a ‘systems approach’. Their new service design, which also takes services close to home, has increased client access and increased client numbers.  This is what community-controlled primary health care is all about.  Screening for chronic renal disease is embedded in annual health checks.   Anyone with acute kidney injury is managed with clinical precision, until their kidney function returns to usual.  Since 2014, there has also been a doubling of people with diabetes, so Danila Dilba staff are managing much more complexity.

As a result of these initiatives, those patients with both renal disease and diabetes are better managed in terms of meeting agreed evidence-based targets for diabetes control.  The evidence is convincing.  Danila Dilba’s national KPIs are either AT or VERY CLOSE to their 2023 targets.

At Danila Dilba, there is a careful balance between ‘siloed’ technical expertise held by those with super-speciality knowledge about chronic kidney disease, and the need for care that looks at the whole person.  As Dr Sarah Giles has said “We’re not managing numbers, we are caring for people”.  Danila Dilba is preventing disease onset through effective risk factor management AND preparing people with serious renal disease and their families for choices, for a planned transition to dialysis.

I learned from the Transplant Society’s Performance Report that Aboriginal Australians are less likely than other Australians to receive a kidney transplant primarily because they are less likely to be put on the waiting list.  The need for culturally competent pre-transplant education is indisputable.  What Danila Dilba shows is that this education cannot happen out-of-the-blue without an existing relationship between the person, their family AND a health service they trust.  Expanding that waiting list is a clear role for community-controlled primary health care in concert with their tertiary service colleagues.

The second community-controlled example I’d like to share with you today is from the Kimberley region.

There, the Kimberley Aboriginal Medical Services known as KAMS has taken a pioneering step in becoming the first aboriginal community controlled renal healthcare service in Australia.  And quite possibly in the world.  This service is known as Kimberley Renal Services, or KRS, a wholly owned subsidiary of KAMS.  By running KRS itself, KAMS ensures a culturally appropriate renal healthcare service is available for Aboriginal people with chronic renal disease close to home.

There are 124 people currently receiving lifesaving haemodialysis treatment cared for by KRS. KRS provides renal healthcare services within four renal health centres.  These are located in the towns of Broome, Derby, Fitzroy Crossing and Kununurra.  Another 18 patients have chosen Home Therapy.   But there is a very large number of Kimberley people waiting in Perth to be able to come back home for dialysis.  Perth is a long way from country.

After many years frustrated by a model that wasn’t working for communities, KAMS secured significant funding for this service innovation which they have designed with absolute attention to cultural safety and clinical outcomes.

KRS has ensured a multi-disciplinary team approach is available to support people throughout their renal healthcare journey.  Access to the renal health centres is provided 6 days a week Monday to Saturday all year round.  The only days that the service is not available are Sunday’s and Christmas Day.

In designing their own solution, our colleagues in KAMS thought it was important to emphasise health as a priority, not disease.  So the decision was made to change from the previous term ‘dialysis units’ to the new term, ‘renal health centres’.   Anyone can engage with their renal health centre for advice, information and understanding.

There is a focus on local staff in each of these sites, learning and doing and caring for their families and communities in jobs vital for the community.  These local KRS staff include Aboriginal Health Workers, Patient Care Assistants, Aboriginal care co-ordinators and Aboriginal nurses.   KAMS is committed to Aboriginal employment.  Currently, 36% of the staff employed in KRS is Aboriginal.   There is an affirmative Aboriginal employment policy and, because KRS is managed by KAMS, cultural values permeate the entire service.  No patient is seen without an Aboriginal staff member.  All non-Indigenous staff recognise that Aboriginal staff guide their practice.

As a matter of necessity, there are three “renal GPs” in the team.  These are qualified GPs credentialed for independent practice who have also gained specific expertise in the nuanced management of chronic renal disease and other medical conditions affecting kidney function.  In a region the size of Germany, this works in a shared care model.

KRS has also been designed to conduct scheduled outreach to communities.  In doing so, this KRS multidisciplinary team does not cut across primary health care. Indeed, KRS has a shared care model that requires a strong foundation in primary health care to work.  This partnership is best when there are common values, clear team arrangements and community control.  Clinical medical records are shared. The renal team offers in-service training, both formal and informal, any time they are visiting a location for regular community outreach visits.  There can be telephone enquiries about patients at any time.

Another part of this service addresses community engagement and life-saving prevention. There are approximately 2,800 people known to KRS who are in Stages 1 to 3 of chronic renal disease across the region.  It is this commitment to prevention that will stem the tide of future incidence.

KAMS is looking outwards and wants to ensure none of these people in Stages 1, 2 or 3 progress to the more critical Stages 4 or 5.  Currently, there are 138 people progressing to End Stage Kidney Disease.  These patients will require haemodialysis within the next 12 to 18 months.  This will more than double the caseload.  With this projection, people are asking why the region does not yet have at least one full-time residential nephrologist.  Addressing this unresolved aspect of medical workforce planning and distribution nationally is critical to successful chronic disease management, and achieving equity of access to renal replacement therapy that our people deserve.

Having visited the Kimberley last week, I was most impressed by the commitment to evidence-based renal disease management through Australia’s first community-controlled renal healthcare service. Speaking with staff and community, the best outcomes are coming through with community-controlled primary health care.  Indeed, this KAMS model can’t work unless there is a strong foundation of community-controlled primary health care.

I learned last week that some of the greatest frustrations occur when primary health care is understaffed, especially when members of the primary health care team are pulled off chronic disease management for a different priority, OR when locum staff don’t handover properly and neglect to check critical pathology results.  These “stop-start” dynamics in primary health care are seen in all settings across the country.  They compromise shared care models.  They are also unsafe for patient care.

For this reason, NACCHO is leading national projects to ensure that core services are fully funded in primary health care and deliver the outcomes our people deserve.

NACCHO supports statements by various governments to transition Aboriginal primary health care to community control.   Successful transition of one local primary health care service in East Arnhem from government management to community control achieved a 400% (yes, FOUR hundred percent) increase in episodes of care within five years.  This community engaged with an Aboriginal community-controlled primary health care service in a way that increased health checks beyond the national average.  More babies were born with healthy weights.  You, in the audience, know better than me the importance of healthy human development right from the beginning of conception to ensure healthy kidneys for life!

Every which way    you look at renal disease    in Aboriginal people, the only solutions that will work in the long term are those that are Aboriginal–led, culturally responsive, located in Aboriginal organisations and evaluated through an Aboriginal lens.

As I have described, Danila Dilba and KAMS show you the proven capacity of community control to deliver results and accelerate outcomes for people with chronic renal disease.  Both services have people sharing their experiences at this conference.  Keep an eye out for their presentations.

To our non-Indigenous supporters in the audience today, I believe these examples about HOW we want to work together will be inspiring. Please expand your discussions during the conference with a positive acknowledgement of community control, and the rights we have as Aboriginal and Torres Strait Islander peoples to shape our own destiny, to partner with you as equals in service delivery, and to be accountable.

So that covers the WHY and the HOW.

I want to talk about WHEN.

WHEN should we start working differently together? 

The answer is right now.

An historic Partnership Agreement on Closing the Gap has been signed between COAG and the national Coalition of Peak Aboriginal and Torres Strait Islander Organisations.  Now, for the first time, Aboriginal and Torres Strait Islander people through their peak representatives will share decision making with governments on Closing the Gap.

This Partnership Agreement has created a high-level COAG Joint Council for Indigenous Affairs.

This Joint Council is made up of 22 members.  That means a Minister from the Commonwealth Government, a Minister from each State and Territory Governments, and a representative from local government. This makes up ten members.

What about the other twelve?

The Coalition of Aboriginal Peak Bodies has ensured that the majority of members on this Joint Council are Aboriginal or Torres Strait Islander representatives.  Chosen by us, in the majority, working for our mobs.

The Joint Council has three reform priorities.  These are:

  1. Establishing shared formal decision making between Australian governments and Aboriginal and Torres Strait Islander people at the State/Territory, regional and local level to embed ownership, responsibility and expertise on Closing the Gap.
  2. Building and strengthening Aboriginal and Torres Strait Islander community-controlled organisations to deliver services and programs in priority areas.
  3. Ensuring all mainstream government agencies and institutions undertake systemic and structural transformation to contribute to Closing the Gap.

This commitment to equal partnership through COAG has brought us to the table.  There’s no going back.

The Joint Council also agreed to the Coalition of Peaks leading engagements with Aboriginal and Torres Strait Islander people to ensure others can have a say on the National Agreement on Closing the Gap.  Surveys are out now and can be submitted anytime by Friday 25 October.

So to close my presentation to you today, a final reflection.

I am mindful that the Bulletin of the World Health Organization recently carried an article stating that kidney disease is ‘THE most neglected chronic disease’.

….. but neglected by whom?

Certainly NOT by anyone in THIS audience!

I applaud your dedication and your hard work.  By being here in Alice Springs, your commitment to better health for Aboriginal and Torres Strait Islander peoples in Australia is visible and much appreciated.

I know this issue is complex and no doubt frustrating.  Occasionally, you must feel completely demoralized in your work.  The Society’s Performance Report recognizes there is ‘no easy fix’.

But please be strengthened by the WHY, the HOW and the WHEN I have described today.

Working together, we can achieve even more than my uncle ever imagined.

National : Closing the Gap / Have your say CTG deadline extended to Friday, 8 November 2019.

 

The engagements are now in full swing across Australia and this is generating more interest than we had anticipated in our survey on Closing the Gap.

The Coalition of Peaks has had requests from a number of organisations across Australia seeking, some Coalition of Peak members and some governments for more time to promote and complete the survey.

We want to make sure everyone has the opportunity to have their say on what should be included in a new agreement on Closing the Gap so it is agreed to extend the deadline for the survey to Friday, 8 November 2019.

This will help build further understanding and support for the new agreement and will not impact our timeframes for negotiating with government as we were advised at the most recent Partnership Working Group meeting that COAG will not meet until early 2020.

There is a discussion booklet that has background information on Closing the Gap and sets out what will be talked about in the survey.

The survey will take a little bit of time to complete. It would be great if you can answer all the questions, but you can also just focus on the issues that you care about most.

To help you prepare your answers, you can look at a full copy here

The survey is open to everyone and can be accessed here:

https://www.naccho.org.au/programmes/coalition-of-peaks/have-your-say/

NACCHO Aboriginal Remote Health : Governments urged to fund dialysis treatment in remote communities

 ” The premature death of Dr G Yunupingu could have been prevented if recommended funding models for dialysis services were already in place, his doctor has said.

With a new funding model to increase the service in remote communities currently under consideration, Dr Paul Lawton urged swift government action to assist in Yunupingu leaving a legacy.

He had been in Darwin for dialysis services because there was no service for him in his home community of Galiwink’u, on Elcho Island. His situation was a high profile example of the growing urgent circumstances for remote-living Indigenous renal patients.

Lawton said there had been a lot of work done in recent years – particularly by Miwatj Health and central Australia’s Purple House – to increase on-country dialysis support, including self-operated dialysis on Elcho Island.

The kidney specialist said G Yunupingu – like Dr M Yunupingu who died in 2013 – advocated for better health outcomes and options for Indigenous people, and both would be proud to leave a legacy if their stories prompted change. ”

Reports Helen Davidson from Darwin writing in the Guardian  See Full report Part 1 Below

The case for change

Aboriginal and Torres Strait Islander people experience disproportionate levels of CKD regardless of urban, region or rural locality. Compared with the general population, Aboriginal and Torres Strait Islanders are four times more likely to have CKD and develop ESKD

In remote and very remote areas of Australia, the incidence of ESKD for Aboriginal and Torres Strait Islander people is especially high with rates almost 18 times and 20 times higher than those of comparable non-Indigenous peoples.

The greater prevalence of CKD in some Aboriginal and Torres Strait Islander communities is due to the high incidence of risk factors including diabetes, high blood pressure and smoking, in addition to increased levels of inadequate nutrition, alcohol abuse, streptococcal throat and skin infection and poor living conditions.

See Kidney Health Australia Recommendation

Download full Budget submission Kidney Health Australia

3. Investing in appropriate patient support services in remote and regional locations

In remote areas, 78% of patients have to relocate to access dialysis or transplant services, compared with 39% of those who live in rural areas and 15% of urban Indigenous ESKD patients.

Separation from country creates significant biological, psychological, social and economic consequences on the health and wellbeing of consumers, their families, communities the wider health and welfare system.

At present, there is inadequate support for Aboriginal and Torres Strait Islander patients to assist and support the renal pathway journey, including emotional and social support.

Incidence of new Indigenous patients starting kidney replacement therapy. 2010-2014

A Patients Opinion

” One possible solution is to explore the possibility of using the Kimberley Aboriginal Medical Services (KAMS) plane which arrives every Friday from Broome with medicines for the clinic, and transports nurses in and out.

Why can’t some of our mob go on that plane for appointments, so avoiding all those hours of travel, especially for our elderly?

My wife also suffers from serious kidney issues. We have been told that renal dialysis is the next step. This will involve twice weekly dialysis which would be done in Broome. For this treatment, we will be expected to leave our family, “country” and home to live in Broome, over 1000 kilometres away.”

I am an Aboriginal man living in the remote desert area of Mulan Aboriginal Community in the Tanami Desert. see Health Authority responses below part 2 

See also :  Indigenous health organisations unite to improve remote dialysis treatment 

Part 1 :Dialysis funding could have prevented Dr G Yunupingu’s death, says doctor

The musician’s doctor says his premature death would have been prevented if he could have been cared for on his home island

The 46-year-old Gumatj musician and singer from remote Arnhem Land died in Royal Darwin hospital last Tuesday, after battling kidney and liver illnesses.

He had been in Darwin for dialysis services because there was no service for him in his home community of Galiwink’u, on Elcho Island. His situation was a high profile example of the growing urgent circumstances for remote-living Indigenous renal patients.

Media reports aired questions about how Yunupingu spent his last days before being hospitalised, but his doctor Paul Lawton said Yunupingu was in control of his health decisions even if they weren’t always on his doctor’s terms, and suffered being away from home.

The kidney specialist said G Yunupingu – like Dr M Yunupingu who died in 2013 – advocated for better health outcomes and options for Indigenous people, and both would be proud to leave a legacy if their stories prompted change.

“Of course he would have been much happier not to have to have a legacy but to be home supported by family on Elcho Island. He may be alive today if that were possible,” he said.

“It could have been possible if there was a funding model that allowed that to happen. Such a funding model has been proposed, and it needs to be supported and agreed to by the minister forthwith.”

Indigenous Australians suffer kidney disease at rates up to 50 times that of non-Indigenous people. The rate of end-stage kidney disease is seven times higher for Indigenous people, and in very remote communities it is 30 times higher.

The number of people at end-stage is growing annually, forcing large numbers to travel into town centres for care, away from family, country, and culture.

“Every person from a remote community … when they end up in renal failure and have to start dialysis, the first thing people want to know is when and if they can get home and if they can receive treatment close to home,” Lawton said. “Dr Yunupingu was no different.”

In 2015 the federal government launched a review of more than 5,700 items on the Medicare Benefits Scheme to determine how they can be “aligned with contemporary clinical evidence and practice and improve health outcomes for patients”.

The review is led by expert panels exploring different areas of health, and has no mandate to find savings.

The expert panel on renal health has published its recommendations, including a new MBS item to provide dialysis in very remote areas by nurses, Aboriginal health practitioners and health workers.

The report noted the likelihood of direct costs of providing staffed dialysis services in very remote areas being much higher, but said no studies so far had considered the broader impact of relocating for treatment.

“It has undeniable social, economic and health consequences,” the report countered. “As a result of these social and economic costs, relocated patients often miss treatments, which has a negative impact on health outcomes.

“As requirements for dialysis can extend over many years, it makes sense to provide services where people live, have support and can continue to contribute to their communities.”

The report is open for public comment, and according to the department of health a final report will be delivered to the minister in December this year.

“It’s a big step forward potentially but one of the challenges in bureaucracies is that sometimes these things spend a lot of time going around in circles,” Lawton said.

Lawton said there had been a lot of work done in recent years – particularly by Miwatj Health and central Australia’s Purple House – to increase on-country dialysis support, including self-operated dialysis on Elcho Island.

“But unfortunately we weren’t able to get him home to Elcho Island because supported dialysis is not available. And clearly a blind man can’t do dialysis themselves.”

PART 2

Access To Specialist Healthcare in the Kimberley For Desert People.

I am an Aboriginal man living in the remote desert area of Mulan Aboriginal Community in the Tanami Desert. I live with my elderly wife and extended family. Mulan is our home.

For people living in very remote communities such as ours, English is a second or third language. Communication with mutual understanding is vital.

I’m sharing this story about our recent healthcare experiences so that frail persons don’t suffer as my wife did.

Recently my wife required a cardiac appointment in Broome.

This involved a morning flight from Mulan to Halls Creek; waiting for the Greyhound bus; then leaving at 10pm that evening to ride to Broome (8 hours to the west). All this was booked through the Patient Assisted travel Scheme office (PATS).

After her appointment my wife was left in Broome with no money, no return bus fare and no accommodation. She spent the night homeless. My wife was rescued by the local police who recognised she was hypoglycaemic and took her to Broome Hospital where she was stabilised.

With the help and intervention of a friend, PATS was contacted and a return bus fare was organised for that evening to Halls Creek where my wife was hospitalised for three days waiting for a flight back to Mulan. This could have been avoided with better planning, travel, accommodation and effective communication.

One possible solution is to explore the possibility of using the Kimberley Aboriginal Medical Services (KAMS) plane which arrives every Friday from Broome with medicines for the clinic, and transports nurses in and out.

Why can’t some of our mob go on that plane for appointments, so avoiding all those hours of travel, especially for our elderly?

My wife also suffers from serious kidney issues. We have been told that renal dialysis is the next step. This will involve twice weekly dialysis which would be done in Broome. For this treatment, we will be expected to leave our family, “country” and home to live in Broome, over 1000 kilometres away.

Kidney disease is a major health concern in our communities. My point is why can’t we have a dialysis machine in Balgo – our biggest community in the desert, 30 minutes from my community? This would reduce the number of patients and their carers travelling to a major town, so avoiding a lot of financial and other social situations. I know there are renal machines in other communities – it makes sense! In the long run, the money spent on transferring our mob across the Kimberley would surely pay for a machine and staff.

My wife will require ongoing medical care. Yet her experience is part of a much larger story where our younger people (who escort loved ones to towns for treatment) are subject to the vices a town offers. In going to town, many of them get lost from their cultural identity. Having services in country closer to home and keeping our families in community helps to avoid these social issues.

I hope that sharing our story will result in more effective planning and improved services in the future.

Response 1 to Mulan Man

Dear Mulan Man,

Firstly I want to apologise again for your wife’s experience in Broome. It was very good of your friend to notify us of your wife’s situation at the time, and I am pleased the PATS officer on the day was able to make contact with your wife and her escort to provide them with some refreshments and return tickets to Halls Creek. You are right, there was a communication issue in the arrangement of this trip, as the PATS staff had expected your wife to return to the PATS office directly after her appointment to retrieve her return ticket, but this was clearly not your wife’s expectation. We will work to improve this communication.

I would also like to thank you very much for engaging with us in this forum to share your story, which was clearly distressing, and yet also includes suggestions for improvement. Your story is a great example of what a forum like this can bring to the planning and delivery of health services.

The WA Country Health Service aims to provide care closer to home, where this is safe and feasible. We need to hear from the people living in communities like yours to be able to gain a real appreciation of the challenges you face, and work to ease your access to our services, either by better travel arrangements, or bringing the care closer to you.

Where possible, in new remote clinic builds or funded remote clinic refurbishments, we are ensuring there is the capacity for a dialysis room to accommodate home dialysis therapy on country. Examples of this are Wangkatjunka and Looma remote clinics. There are Renal Dialysis Hostels being built or already built in Kununurra, Fitzroy Crossing, Derby and Broome, to ease the burden of accommodation when people do need to attend the dialysis centres in those towns. WA Country Health Service is also developing a Renal Health Strategy, and will continue to work in close partnership with our renal service delivery providers.

I agree there are also opportunities for us to work more cohesively with other agencies in the Kimberley in undertaking the logistics of moving our consumers, equipment and those delivering care around the region. You have provided some very logical suggestions to resolve the issues you raised, and we would like to arrange to meet with you, and members of your community, to further identify the barriers you face accessing health care and your suggested solutions to those barriers.

You can contact me to discuss how to arrange this meeting. The other signatories to this reply will also attend to engage with you and your community.

Margi Faulkner, Broome Hospital Operations Manager

Dr David Gaskell, Kimberley Regional Medical Director

Carmen Morgan, Kimberley Regional Director of Nursing and Midwifery

Response 2

Dear Mr Mulan Man

We’ve had opportunity to talk together recently which I’ve valued.

Thanks to your help, I want to share here some of the changes we’ve made in improving our health services.

As you know, the Patient Assisted Travel Scheme (PATS) provides travel and accommodation subsidies to patients for whom specialist care is not locally available.

PATS is State-funded with one policy for all WA. All PATS staff are required to follow these State-wide rules. They seek to ensure a safe and planned journey when transporting clients from home to a health service and back.

PATS policy ensures that vulnerable patients can choose a family member as escort to accompany them. This escort is responsible for assisting the patient throughout the journey. Roles include assistance in communication, physical support, need for encouragement, and help with cultural needs. You have pointed out that some aboriginal people speak other languages more fluently than English (like Kukutja). PATS staff seek to identify need for a translator and so make necessary arrangements.

Yet there are many variables beyond our control which create uncertainty – like phone coverage, bus and plane operations, timings, the conduct of the escort and other people, or the weather. For the patient, navigating all this uncertainty only compounds the stress of suffering and separation from home. Of all this, I am mindful.

So, in response to the first part of your story, have we done anything to improve the provision and quality of our PATS services?

Yes, we have made several improvements. Here’s the current situation:

The PATS booking service has been increased from 5 days to every day of the week, from 0800hrs to 1600hrs, by phone or email. This ensures that, every day, a PATS officer is able to make a booking or assist a patient with their journey. We have extended the Aboriginal Liaison Officer (ALO) service from 5 days to every day of the week. ALO hours have been extended also. Broome now has 5 positions. Between them, they work every day, including weekends, from 0630 to 2200 hours. As this period covers the arrival and departure times of all scheduled Greyhound bus and plane services, an Aboriginal Liaison Officer is present to meet clients from their plane or bus and assist them with their onward journey. So transport home can be booked, our Aboriginal Liaison Officers inform all transiting clients to present to the PATS Front Office. With arrangements in place, patients return to and wait in the transit lounge. From there, an officer takes them to the bus or plane on time. Remoter health facilities do not have a PATS Office, of course, so the PATS team works closely with local staff to ensure that travel planning and documentation are explained clearly and in person to clients. A spare seat on the KAMS (Kalamunda Aeronautical Model Society) plane, when available, has been allocated to PATS clients and will be used for this purpose in the future. A major development just pre-dating your post was that WACHS Kimberley secured the Skippers Charter Plane service from Broome to Halls Creek via Fitzroy Crossing, 3 times weekly. This flight schedule had been at risk of closure.

Thanks for your engagement on and off line. I think that being in closer touch makes so much difference. I’m aware that your wife had an awful experience not long ago. I hope that she gains some peace of mind in knowing that you sharing her story has led to improvements which will help other patients on their travels to and from health care.

Regarding the need for dialysis care closer to home, we have spoken together. I need to post this now yet I wish to reassure you here that the ‘bigger picture’ is being looked at by all the key agencies – WA Department of Health, WA Country Health Service, Kimberley Aboriginal Medical Services overseeing the Kimberley Renal Service, and our visiting specialists from Royal Perth Hospital. Much thought and planning are going in to improving the delivery of quality-assured services closer to home. In the township of Fitzroy Crossing, for example, a new Renal Health Centre is soon to open with 4 dialysis chairs. Yet there are many communities (as in your desert community of Mulan in the Kutjungka) without access to a haemodialysis service nearby. We are acutely aware. All of us Kimberley Health providers want to deliver the State Government’s commitment to have a mobile dialysis unit operate here in the dry season, as soon as possible. This will allow dialysis patients to go home for a while so they can re-connect with family and friends on Country. Given the right resources, this will be delivered. I will keep in touch.

Would it be helpful if we meet together? If you would like this, if privileged to be invited, I will come to your Country soon.

With best wishes to you and your wife,

David

Dr David Gaskell

a/Regional Director, Regional Medical Director

WA Country Health Service, Kimberley

NACCHO health news alert:Preventing disease and dialysis in the younger generations

 

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Recently Donna Ah Chee, CEO , Central Australian Aboriginal Congress in Alice Springs , gave a speech at the launch of the Kidney Action Network, examining progress in managing this major health threat to indigenous communities and the work still ahead.

Members of  the network who also spoke at the launch Left to right: John Paterson (CEO AMSANT), Donna Ah Chee (CEO Central Australian Aboriginal Congress), Preston Thomas (Deputy Chair of Ngaanyatjarra Health / Director of Western Desert Dialysis), Sarah Brown (CEO Western Desert Dialysis), Andrea Mason (Coordinator, NPY Women’s Council)

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The following article is reproduced from our friends at CROAKEY

 

In 2011 the AIHW published the Chronic Kidney Disease in Aboriginal and Torres Strait Islander People (AIHW, 2011) report which contained some alarming statistics about the renal health of Indigenous Australians.

The report found that Indigenous Australians develop end stage kidney disease (ESKD) at over six times the rate of non-Indigenous Australians and that Indigenous Australians were four times more likely to have chronic kidney disease as a cause of death.

Further, 70% of ESKD cases in indigenous Australians occurred before the age of 60. At the time of that report diabetic neuropathy was the most commonly attributed cause of ESKD present in 60% of cases.

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Many thanks to Donna for allowing us to provide the full transcript of her speech below:

The stark reality of the numbers of Aboriginal people on dialysis here in Alice Springs is a constant and real daily reminder of the work that still needs to be done to address Aboriginal health disadvantage and Close the Gap in our life expectancy.

However, at the outset I think it is vital to acknowledge the very real health improvements that are now being seen in the prevention and treatment of chronic illnesses, the very diseases that have created this kidney disease crisis.

Since the beginning of the Primary Health Care Access Program (PHCAP) in the NT back in 2001, there has been a continuing improvement in life expectancy amongst Aboriginal people in the Northern Territory, primarily because of a decline in premature deaths in midlife caused by chronic illnesses.

The NT is currently the only jurisdiction on track to Close the Gap by 2031, if the current trend continues.

There is now much better access to evidence-based treatments, including medicines, than was previously the case. We have many more health professionals on the ground now. This has helped to detect renal disease early and slow its progression.

However it is vital that we do much more in terms of the primary prevention of renal disease in the first place, and this requires action to prevent the epidemic of obesity and diabetes.

I have just been to a national forum in Canberra on this issue, organised by Diabetes Australia. Congress made four key policy proposals to address the prevention of the obesity and diabetes epidemic:

  1. To re-establish the Primary Health Care Access Program, or PHCAP, so that the expanded primary health care core services model can be fully funded and so make further improvements in access to primary health care.
  2. To fund the key early childhood programs (ante-natal and for the first three years of childhood) that will help to ensure that all young people have good self-regulation and impulse control and will be more resistant to the development of addictions including fat and sugar
  3. To introduce an alcohol floor price, as cheap alcohol consumption is a major contributor to obesity and the inability to self-manage chronic disease
  4. The introduction of a 20% tax on glucose—especially on the glucose in sugary soft drinks—and fat, with hypothecation of the tax to ensure that the tax is used as a subsidy for fresh fruit and vegetables

We must get much more serious on the prevention of renal disease than we have been up to now.

However, there are now some early signs that for the first time the rate of increase in End Stage Renal Disease may have at least plateaued, as the number of new patients coming on to dialysis in the NT has declined slightly for the first time.

There are many reasons for this, but it is at least partly due to the real improvements that have been made in the NT health system, where a large injection of new resources have been allocated over the last decade in a planned way, according to need.

Unfortunately, in recent years many new resources have been allocated through competitive tendering. This form of funding allocation has been fragmenting the health system, and has the potential to slow down the gains that we have made up to now.

Also, the way that renal dialysis services are being delivered has not been part of this change process. We are largely stuck in the same “centre-based” approach that we have had for decades, with patients being given little option other than to move to Alice Springs and other major centres to go on to dialysis.

It should be acknowledged that there have been efforts to get some dialysis patients home on ‘self-care’ home haemodialysis, but only a very small proportion of our people are currently capable of achieving this.

Congress has advocated for many years for the option of nurse-assisted home-based haemodialysis for all of the reasons outlined in the Central Australian Renal Study, which was completed in 2010.

Congress recognises the work being done by the Western Desert people to help themselves deal with the high levels of kidney problems in their communities. They have led the way in taking initiatives to ensure that there are better options, including nurse-assisted home haemodialysis. Where government have failed to deliver, Aboriginal people have had to try to fill the void with their own funds.

The Western Desert Nganampa Walytja Palyantjaku Tjukaku remote area dialysis services organisation has shown that nurse-assisted home haemodialysis is not only possible, but also very highly valued by the community. This vision needs to be built on by using existing government resources differently; dialysis needs to be decentralised, and provided out bush where people live. It is very likely that this option is not only better but also cheaper. It is not acceptable that in the absence of this option some of our people are choosing to die at home without life-saving dialysis treatment.

There have also been some encouraging signs recently in terms of improved access to renal transplantation for Aboriginal people, with more than 20 transplants in the NT last year. There is still a lot more improvement needed in this area because renal transplantation is the definitive treatment for End Stage Renal Failure, and allows people to live a full, active and healthy life once more. We know that a lot of dedicated people are working hard on this issue.

There has been a lot of work done to bring kidney disease in remote communities to the attention of governments. This work was distilled in the 2010 Central Australian Renal Planning Study.

Congress is very concerned by the refusal of the state and Territory governments to engage with the key recommendations of the Renal Planning Study. This is why we need stronger advocacy and political action. This is why we need the new Kidney Action Network.

There has been a failure to recognise and act on the fact that Alice Springs has to be the hub centre for delivery of services to people in most of the tri-state (NT-SA-WA) cross border desert areas, which rely on Alice as their natural, geographic, social and cultural regional centre.

The failure to provide serious support to the ‘Alice Springs hub centre’ concept means that many patients are still forced to move to Adelaide and Perth, which are too far from their families, communities, social life and cultural necessities.

Congress fully recognises the impact these planning and infrastructure failures have on individuals, their families and their communities. Congress also recognises that tri-state planning is not something that has ever been done well. This is a big challenge for our complex, federated system.

For the sake of the End Stage Renal Patients across the whole of central Australia, we have to get this tri-state planning right and ensure people are provided the right type of renal replacement treatment in their home communities. This must include nurse-assisted home haemodialysis. We also have to address the obesity and diabetes epidemic through effective prevention. We need to all join together through this new Network and make sure all the necessary changes are achieved.

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