” 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
” 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
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