Transcript

MIC CAVAZZINI: Welcome to Pomegranate Health, a podcast about the culture of medicine. I’m Mic Cavazzini, for the Royal Australasian College of Physicians. Most of you listening will know there are serious gaps between the average health of Indigenous and non-Indigenous Australians, and that behind this are generations of disadvantage and trauma. Life expectancy of Aboriginal an Torres Strait Islander people is ten years lower than it is for the rest of the population, and the gap has actually increased since 2008.  But targets to reduce child mortality and enrol four-year olds in pre-school are on track, thanks to some culturally-appropriate maternity and early childhood programs.

In the spirit of a 2019 report to the Closing the Gap initiative by the Lowitja Institute, I want to focus on promising examples of Indigenous-led interventions like this, and also highlight how health professionals can ally with such programs. The RACP has mapped out a best-practice guide for its members called the Medical Specialist Access Framework. It addresses the critical fact that Indigenous Australians currently receive specialist medical services 40% less often than non-Indigenous Australians. It’s easy to imagine remote communities out in the red desert and blame culture clash or the tyranny of distance, but that’s only a fraction of the story.

35% of Australia’s Indigenous people live in major cities and 44% in areas classified as regional. Even if tertiary services are more limited in the country, we heard back in episode 48 how there are some very effective models of care. So why aren’t specialist services reaching Aboriginal and Torres Strait Islander people? The reason is usually very straightforward, according to Donna Jeffries, Executive Manager of the Marrabinya Brokerage service.

DONNA JEFFRIES:       For Indigenous people in particular, one of the greatest barriers and challenges is cash.  People don’t have money—it’s a socioeconomic disadvantage.  It’s the isolated rural communities, which can be hours away from the nearest service provider.  They’ll go and see the local GP, that’s fine.  But if the local GP says, “Oh look, you need to probably go and have this test or that test,” and if you don’t have the money, it’s too stressful.  You don’t know how you’re going to get there.  You have to organise accommodation when you go. So it’s just easier not to go, because it’s too hard, it’s too difficult, and they’ll just accept the cards that have been dealt for them.

MIC CAVAZZINI:         The Marrabinya program is funded through the Western NSW Primary Health network, and absorbs some of the financial shock of seeing a specialist. The process starts at the GP consultation—if a patient is diagnosed with a chronic disease then the doctor can write up a GP Management Plan. Where multidisciplinary care is required then a more detailed Team Care Arrangement is sketched out. A patient with type 2 diabetes, for example, may need to see an endocrinologist, a diabetes educator, a podiatrist and an exercise physiologist. Other conditions Marrabinya is focused on are cardiovascular disease, cancer and chronic respiratory or kidney disease.

While the GP consults are covered by Medicare, the referrals from then on may have out of pocket costs at the clinic, and certainly on the road. As you might have heard in Episode 48, for serious diagnostic tools and inpatient care the main referral centres in country NSW are Bathurst, Orange and Dubbo. Smaller towns like Bourke or Mudgee host visiting clinics for the most needed specialities, but some patients will be hours away by road regardless. And a few ultimately end up in Sydney for the most serious procedures. If a GP enlists Marrabinya, within 48 hours staff will be in touch with the client to discuss the appointments they need to make and what help they need to get there. Since the health network covers more than half the state, there is a Marrabinya staff member drawn from ten community centres around the region. I met them all at a meeting on Wiradjuri country, in a motel conference room in Dubbo. Unfortunately there was a road crew working just outside the door.

DESLEY MASON:         I’m Desley Mason, and I cover the Womble cluster, which is Dubbo, Wellington, and…

SANDRA RITCHE:        Sandra Ritchie, I’m from Condobolin and I cover Condo and Parkes, Forbes…

POSSUM SWINTON:  Possum from Bourke, I cover the Gundabooka cluster which is Bourke…

KYM LEES:       Kim, I do the Kamilaroi cluster, which is Coonamble, Gilgandra…

JAKE BLOOMFIELD:    Jake, and I cover the Noono cluster and that consists of Brewarrina, Walgett…

JOANNE BUGG:           My name’s Joanne Bugg, I do the Windradyne cluster, which is Kandos, Mudgee.

MELISSA FLANNERY:  Melissa Flannery, I do the Garan cluster, I cover Cowra, Orange…

GABI BUGG:    Do I just say hi, or just say my name’s? Okay.  My name is Gabi Bugg.  This is my first day with the Marrabinya team, and I’ll be covering Bathurst area.

DONNA JEFFRIES:       You’ll notice the name—I think everybody introduced the name of the cluster as we went around as well.  So they all have Indigenous names, which represent either landmarks or tribal groups or great warriors where we operate.

MIC CAVAZZINI:         Yeah, just to get that impression of how diverse it is around here.  So here, about 12% of the population is Aboriginal around the Dubbo area.  Is that pretty consistent throughout the central west, or are there towns that have much higher populations?

DONNA JEFFRIES:       Some of the rural areas, I know Brewarrina for example, we have as high as 67% Indigenous population, whereas places like Bourke are around 30, 32%.  So it sort of fluctuates, a little bit.

DESLEY MASON:         Goodooga, which is my hometown is about 90% Aboriginal.

MIC CAVAZZINI:         How big a town is that?

DESLEY MASON:         The population is about 250.

MIC CAVAZZINI:         And now you’ve explained all the regions that you cover, maybe you can explain how you connect with the people that are through the GP clinics.  Is it a kind of a case worker approach that you really help them along every – you make the phone calls and get an appointment and so on?

DONNA JEFFRIES:       Our staff do ring and confirm if a patient’s got an appointment with a cardiologist somewhere.  We’ll ask the specialist rooms if there’s a bill associated with the appointment, if there is, we’ll say, “Okay, well, we’ll be in charge of that, can we provide you with a purchase order number, you tell us what it’s going to cost and we’ll take care of that”.  So we do all of those negotiations up front, but we don’t actually go and make the clients’ appointments, so we’re not doing the care coordination role.  We’re just sort of brokering the services that they need.  Feedback from a lot of our clients with that is that they’ve actually found that quite empowering, and they’re stepping up to the mark and taking more responsibility for their own health care and their own health planning, which has been quite a good outcome as well.

MIC CAVAZZINI:         Yeah, sort of meeting them half way, it’s like, “We’ll help you with this if you put the effort in to do that.”

DONNA JEFFRIES:     Yeah.  So our program is specifically designed to make sure that the GP know what’s going on and the client know what’s going on.  And they are the main two people in the driver’s seat. The meaning of our name, Marrabinya, it’s like, “hand outstretched.” So you’re giving somebody a hand.  You’re not actually doing stuff for them.

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MIC CAVAZZINI:         Thanks to having indigenous staff serving regions they are connected to, Marrabinya has quickly earnt the trust of clients. Long-term relationships are important in small communities, particularly when health professionals themselves often rotate through at a high rate.

But Marrabinya has had to work harder to get the recognition of some GP clinics and providers of specialist services. You’ll hear Kym Lees, Joanne Bugg and Sandra Ritchie describe some of these encounters. But first Melissa Flannery explains what a relief it is for Aboriginal people to be able to turn up to a specialist as a paying client.

MELISSA FLANNERY:  They don’t feel, you know, “Oh God, I’ve got to tell them I can’t afford this”, they know it’s right and they can go.  The service providers have been good with the program, a lot will take our purchase orders.  You’ll get some that refuse, that will say “No, we only want credit card payment”, like some are really blunt and just refuse, “Oh no, sorry.  Give me a letter to prove that”.  That’s what I’ve had.  Not very often. 

KYM LEES:       I’d probably say to one specialist here in Dubbo, how they used to bulk bill before they – when we ring up and just confirm an appointment, because they hear that Marrabinya’s paying for it, “Oh, no, it’s $530”.  So that’s the biggest thing.  Why were you bulk billing before before Marrabinya come along? They say to me, “We only get $91 back from Medicare, we actually get to $530 from you”.  Where we could be spending that $530 on someone else.

MIC CAVAZZINI:         I’m just going to jump in here to expand on what some of you may be thinking already. The injustice experienced by Kym is an echo of want throughout the system. Small private practices are losing money when they bulk bill. The Medicare rebate alone just isn’t enough to cover the costs of medical indemnity premiums, rent and staff wages. No wonder that specialty services aren’t that viable in outer regional areas. As much as a practice might want to enable access to patients that can’t afford it, is it for them, the commonwealth to subsidise this? Or is it the state’s responsibility to plug gaps with more outreach from their Base hospitals? There’s a whole podcast to be done on funding models, but let’s get back to the story.

MIC CAVAZZINI: Is it still a work in progress to get people to know what Marrabinya is, and referrals ultimately?

KYM LEES:       So there’s some service providers that we don’t know much about that we want to know more.  We actually invite service providers to our meeting every three months.

JOANNE BUGG:           We have gone out and networked with the GPs in the Bathurst area, Melissa came over.  Went and introduced ourselves, spoke about the program, took some pamphlets and showed them the new referral and what’s expected, and I think it’s helped heaps.  The referrals are coming through now correct, and if we have any trouble, we just ring back and say, “Well, this isn’t signed off or whatever.  Can you do that?”.  You build up a relationship with certain workers.  The nurses maybe, or the practice.  Yeah, the practice nurse.

MIC CAVAZZINI:         In the whole western health PHN, am I right, there’s about 405 GPs?

DONNA JEFFRIES:       Yes that would be correct, 405 over 110 different GP practices.  And we have, up until the end of March, we’ve had referrals from at least 88 of those practices.  So we’re well over 80% of practices referring into our program, which indicates that it is understood and being utilised. 

MIC CAVAZZINI:         That’s great news, yeah.

DONNA JEFFRIES:       It’s pretty good. Since we’ve been operating in November 2016, we’ve managed to set up over 760 suppliers, a multitude of different specialists and allied health dotted throughout New South Wales.  But we also have some providers in Melbourne and Adelaide as well, because we sort of border some of those communities, and the closest health care specialist is in those locations.

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MIC CAVAZZINI:         While Marrabinya helps with the costs of seeing a specialist, there are other barriers too for many Aboriginal and Torres Strait Islander clients. Back in episode 12 we heard how Yolgnu people in Arnhem land look at the hospital not so much a place of healing, but somewhere you go to die. While the gap in worldviews isn’t so stark for most Aboriginal families, there are many ways in which healthcare institutions give a systematic if unintended cold shoulder to Indigenous patients. A sign that this might be occurring in your setting could be high rates of missed follow-ups or discharge against medical advice. Rates of self-discharge among hospitalized Indigenous Australians are 6 to 19 times higher than they are for the rest of the population. Surveyed patients say that it’s because health services are impersonal and don’t accommodate family obligations. Many remain wary given rude or racist treatment in the past.

And the word ‘shame’ often comes up when Aboriginal people talk about their interactions with mainstream society. It refers to the fear of being judged for not following protocol. You might have experienced something similar when traveling in a foreign country. You’re at the bank and you don’t understand which forms you need or why everyone is queuing in a certain way, but you’re too embarrassed to ask. Well for Aboriginal and Torres Strait Islander people this happening in their own country—there’s this assumed social curriculum that most of us take for granted. I can’t recommend highly enough the lectures by US academic Robin Di Angelo on deconstructing white privilege which I’ve linked to at the website. I like to think I’ve earned my progress through society, but just how much have I benefited from systems that discriminate along race, or gender or class?

Conversely, Aboriginal people are often held personally responsible for bringing financial hardship or ill health upon themselves when they same systems may be holding them back. As the Marrabinya women describe, this implicit prejudice can make Aboriginal clients cautious about how much they share with health professionals. I asked the team what non-Aboriginal providers could do to make their services more understanding. You’ll hear from Melissa Flannery, Possum Swinton, Donna Jeffries, Desley Mason and Kym Lees.

MELISSA FLANNERY:  Like I know, I’ve worked in a practice as an Aboriginal health practitioner and people find it hard if it’s all mainstream services, not being, you know, see a familiar face where they feel comfortable, and if they’re waiting there with all these white people they get up and leave.  There is shame and it’s just uncomfortable.  I think it’s uncomfortable to sit there and you feel judged.  There’s a lot of judgment, especially in small towns.  If someone knows one family member did something wrong, they think everyone else did it, and a lot of judgement I reckon.

POSSUM SWINTON:  Some people, I think a lot of Aboriginal people feel inferior.  And that’s where our service is great because we don’t just transport the client or the patient who needs help, we encourage them to have one support person go with them.  So I think that makes a big difference ‘cos two sets of ears are better than one.  And it’s just having that support, and not feeling alone in a waiting room, as you say, in amongst everybody else. And I had a gentleman, he was born in Goodooga and lived there, and in his adult years he relocated to another community that you could access services better.  But not having any sort of support for that, he wasn’t getting to appointments and things because he couldn’t afford it.  His health was suffering.  So he relocated back to Goodooga, and his niece said it made a significant difference to his health because of that service that we provided for him.  Which is pretty good.

MIC CAVAZZINI:         Yeah.  So even though it was a bit further, just the fact that he had a safety net there.

POSSUM SWINTON:  Yes, yeah, yeah, his health has improved since then.  Yeah, which is great.

DONNA JEFFRIES:       When you are working with Aboriginal and Torres Strait Islander people, a lot of the times people are on guard.  And I think as part of a team, many of us that are sitting around this table in the area that we operate, we all have really good strong community networks and family networks.  As soon as people can start joining the dots, the barriers and the walls seem to go down, and people are more likely to engage, they’re more likely to share their experiences whether they’re good or bad with you, and it’s like a trust is formed. 

DESLEY MASON:         Sometimes, if you’ve got an Aboriginal health worker, they can, the Aboriginal health worker can explain to the patient what’s happening, because sometimes jargon is a big thing with Aboriginal people, especially Elders don’t understand it.

MIC CAVAZZINI:         Yeah, and there was a study in the Medical Journal of Australia that showed how a direct link between the number of Aboriginal health workers per population and their adherence to diabetes services, how many appointments they went to and you know. When you guys are calling up the various clinics making appointments, are there some clinics that you prefer to call up because they’re easier to deal with, they understand culture better?  Do you have a blacklist or whatever? Or does it just depend on who’s nearest by?

DONNA JEFFRIES:       I’ve had a client report back to me, she was a Christian lady.  Her and her husband were down in Sydney and she has really severe respiratory disease.  And her husband was getting quite angry because the health care professionals come in, and they’d say “Look, we know you’re from Brewarrina.  Now you just need to tell us how many drinks and how many smokes you have”.  And these people, like they’ve been Christians for years, I’ve never known either of them to drink or smoke or anything.

It’s just really condescending and that can be typical of some of the stories that get fed back to us.  Because blackfellas are not shy in coming forward.  If they have a bad experience, they’ll let us know, and particularly because we’re all Indigenous as well.  And you know, we’ll be aware of it.  If it happens more than once, well then I’ll contact the practice or the service provider or whoever it is, and so hopefully we’re providing that little bit of, not cultural awareness training, but we will highlight and will bring to the attention if some of our clients have had a bad experience.  So yeah, I wouldn’t call it a blacklist or a whitelist or whatever, but …

MIC CAVAZZINI:         That’s the wrong word anyway, isn’t it?

DONNA JEFFRIES:       Yeah.  If there’s been a bad experience, definitely we’ll find out about it.

DESLEY MASON:         Yes, experiencing it personally myself.  Of course I’ve got issues with my liver, some kind of, it’s a fatty liver and that, and they say, “Are you heavy drinker?”.  And I said, “Sorry sir, I don’t drink”.  My last drink was 30 years ago”.  I never was a heavy drinker at all, it might have been once a month.  And that’s what I assumed it was, I was a full-blown alcoholic.  And that’s the hurtful part of it.

POSSUM SWINTON:  And I think another thing to get through to specialists and that too is how isolated some of our communities are, how much harder it is for them to get to these appointments.  So if they can try to ensure that they, you know, if they’ve got an appointment not to change it.  Sometimes I know it can’t be helped.  But can you really look at where that person’s coming from, and what it’s taken for them to get to where they need that help?  If you’re going to have to change anybody or put anybody back on the list, can it be somebody who can access it more easily than our clients?

KYM LEES:       Or you have like a hospital that puts a client sitting there waiting for surgery, the hospital will say “No, we’re not going to operate today.  We’re going to operate tomorrow”.  Comes that day, they put it back again.  They put it off, put it off, put it off.  We supported someone down there for about a month, waiting for surgery. So it was about $2,000 for a week that we were supporting them to stay down there.  It’s very frustrating, because they’re away from home.  They’re away from family.  But you can’t go home because if he did go home, he’d be put back for another year for an operation.

POSSUM SWINTON:  What do you do? Yeah.

DESLEY MASON:         Because a lot of the people from out at Weilmoringle and Goodooga, they don’t have public transport.  So they rely on family members to get them to and from appointments.

MIC CAVAZZINI:         And the family member that has come along has given up a day of work

DESLEY MASON:         That is correct.

POSSUM SWINTON:  Yeah, you can’t always guarantee they’re going to be able to take you again later on.  But even though we’ve supplied them with accommodation, they’ve got to buy food on top of that, and you’re thinking it’s not cheap, you’ve still got to have meals and things, and yeah.

MIC CAVAZZINI:         And what’s it like going to ‘the Big Smoke’ for a lot of these clients?

MELISSA FLANNERY:  Scary.  It’s scary for me.  I won’t drive there, no way.

DESLEY MASON:         And one client that lives in Dubbo, she won’t go to Sydney by herself, because she’s terrified.  She’s terrified of getting off the train, and if something’s going to happen, or terrified of getting lost.  A lot of Aboriginal people, and I’m one of them, don’t know how to catch buses and trains in Sydney.  How do you do that?

DONNA JEFFRIES:       You need an Opal card first.

DESLEY MASON:         Well, if you say Opal card to me, I’d look for Lightning Ridge to go look for an opal.  So if you say to someone, “Oh, you need an Opal card”.  “What is that?  Where do I get it from?”.  And one good thing with Marrabinya is that, and a lot of them love it, is cab vouchers.

POSSUM SWINTON:  Another excellent service that works in with us is Country Care Link, where if you can give them 48 hours’ notice, it’s a volunteer group, run by Sisters of Charity, and they’ll organise somebody to meet you at the train or the plane and take it to your accommodation.  And they’ve said they couldn’t be more helpful.  And it costs nothing, and it’s for country people, not just Aboriginal people, but for all country people.  And it’s great to have resources that you can work together with that can help us out as well, because that saves on our funding a little too.  And it just makes the trip a little more comfortable for them.

DONNA JEFFRIES:       Just one thing that that would be helpful for specialists and GPs and people that work with Indigenous people is to just not be afraid.  Like we’re people like everybody else.  So just treat us like everybody else, and leave all the assumptions and any pre-judgments or whatever at the door, and just treat us as you would your mother, your brother, your sister, your father, whatever.  So that would be a big hint from me.

SANDRA RITCHIE:       I know one of the accommodations down here, because mine’s come from Condo down here sometimes for treatment, and one of the accommodations down here, they just love it.  He goes out and sits out with the clients and have a cup of coffee with them and everything.  And they just love going to the Atlas down here.

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MIC CAVAZZINI:         The Western NSW Primary Health Network that Marrabinya falls within, is one of 31 PHNs across the country that were established to respond to the specific needs of each locality. But this model for investing Commonwealth Integrated Team Care funding is unique in design and in its effectiveness. Every community is different, and one of the principles of the RACP’s Medical Specialist Access Framework is that models of care need to be context-dependent. But first and foremost, services for Aboriginal and Torres Strait Islander people will thrive best where community leadership is included in the design and delivery. Marrabinya is an exemplary case study of these principles.

To bid for the government contract, Donna Jeffries and her colleagues brought together established and respected providers of Aboriginal Health services, namely Maari Ma in Bourke and Bila Muuji in Dubbo. Their proposal was considered unfeasible at first, but Donna describes how the business case was made, and how Marrabinya has earned a new round of funding, to continue to reach more people.

DONNA JEFFRIES:       For a number of years prior to the PHNs, a lot of the funding was actually being spent on care coordination.  So I was up to 70, 80% of the money that was allocated for the program was actually spent on wages, program running costs, office space, vehicles and that sort of thing.  And they wanted to try things differently.  Give it to an Aboriginal corporation to basically put Aboriginal health into Aboriginal hands, which is what you have with Marrabinya. And the way that we operate, we spend, we have a 50:50 split, 50:50 commitment.  So 50% of our annual budget will be spent on staff and program costs.  And 50% of our budget is put towards clients’ supplementary services. 

Another way that we’re able to really save on setup costs and things for a brand new program was to actually use the infrastructure that’s already available in communities, like where we could we’ve co-located with Aboriginal community-controlled health organisations such as Outback Division of General Practice out in Bourke.  So these organisations, they already have offices, they already have desks, they have chairs, they have telephones, all we needed were new employees, a mobile phone and a laptop and a good database to collect all of our information and track our services. 

So to set the program up, doesn’t take rocket science.  We’ve worked really hard to keep it simple.  And the benefits of that is that we can sit and easily talk about the program and explain it to our potential clients but also to our health care partners across the region.  So it’s been quite remarkable.  We started with 600 clients in November 2016, and up until the end of last December, December 2018, we had serviced over 5,050 people.  So we average every three months between 950 and 1,000 new referrals, and we’re organising up to 5,500, almost 6,000 support services for those referrals that we get.

MIC CAVAZZINI:         Wow.  In terms of measures that you can collect through all of the usual health system, do you think it will be possible to measure that impact in terms of disease and wellbeing or is it too hard?

DONNA JEFFRIES:       I think over time. Over the coming years we’ll be able to get a more accurate measure of people’s healthcare status.  I know there’s anecdotal evidence there that people are actually getting better because of Marrabinya. There was a lady back in our, when we first started, I think she was a client of Dubbo Aboriginal Medical Service.  And she was on the public eye health screening agenda.  But she required these specific injections every two weeks, but the public clinic was only available every six weeks.  Anyway, the GP thought, well, we’ll refer to Marrabinya and we’ll see.  And we said, of course, we can step in and send her off to a private provider.  And the feedback we got from her GP was that it saved her sight.  And because of that, she was able to continue working, and she still had a quality of life and was able to contribute looking after her family. 

So the work that we’re doing, it provides not only healing our mob, but it’s also were able to contribute back to the whole community through a program such as this.  It’s the only one of its type in Australia.  But really, there’s absolutely no reason that a program like this could not expand further or even be Australia wide.

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MIC CAVAZZINI:         Many thanks to all the staff at Marrabinya for contributing to this episode of Pomegranate Health. Their names were Donna Jeffries, Desley Mason, Sandra Ritchie, Possum Swinton, Jake Bloomfield, Joanne and Gabi Bugg and Melissa Flannery. Invaluable feedback came from Masita Maher who leads the RACP’s Aboriginal Initiatives, and Uncle Terry Williams from out Consumer Advisory Group. And as always, thanks to the tireless members of the podcast editorial group.

Please go to racp.edu.au/podcast to see how the Medical Specialist Access Framework can guide more equitable delivery of care to Indigenous patients. There are several inspiring case studies from around the country and from different healthcare settings. At the website there are also links to eLearning courses on cultural safety and also those lectures I mentioned earlier. If you like the show, please tell a friend how they can subscribe to Pomegranate Health. Any podcasting app will do, or there’s also an emails alert mailing list for the late adopters.

Finally, its worth reflecting that the 170 year old sandstone building that houses the RACP stands on land the traditional custodians called Cadi. The Cadi people, or Cadigal, were almost completely wiped out by a smallpox outbreak in the year after colonisation. This podcast acknowledges the wealth of knowledge that has been lost, but also the thriving culture being passed on by Elders past and present. The RACP supports medical graduates and trainees identifying as Aboriginal, Torres Strait islander or Māori to undertake physician training. There have been 20 recipients of the scholarship since it started in 2015. That’s all for now. I’m Mic Cavazzini.