Community Dialysis Unit Expression of Interest information webinar – 18 March 2024

[The visuals during this webinar are of each speaker presenting in turn via video with reference to a PowerPoint presentation being played on screen]

Jason Agostino:

So we’ll get started. So I just want to begin by acknowledging that I’m here on Ngunnawal and Ngambri country, the place that I’m fortunate to call my home, and to pay my respects to their Elders past and present and extend that respect to the Elders of the lands that you are all calling from. This is one of those great NACCHO calls when there’s people from all over the country dialling in.

My name’s Jason. I’m a GP and an epidemiologist. I’m the Senior Medical Advisor at NACCHO and in that role I co-chair the Better Renal Services Steering Committee which is the committee that’s providing the Government with advice on sites and how we create a system that’s more sustainable to have more people on dialysis on country.

With me is Mel Beacroft. People might know Mel from her time at NACCHO but she’s here as a Director within the Department and her team provides the secretariat support for this.

So today we’re recording this webinar and we’ll be posting it on the Department’s Better Renal Services web page. And that’s about it really. What we’re going to do is we’re just going to run through – Mel’s going to provide a bit of a background on the Better Renal Services commitment and then we’re going to go through the expression of interest form that is going to be posted up on the website tomorrow and offer opportunity for people to ask questions at the end. Just because there’s a really large amount of us it will be difficult if we have questions at each point of it. But even if we don’t get to everyone’s questions today our intention is for you to either post them in the chat and we’ll answer them, post them on a sort of frequently asked questions link on the web page or you can email the Better Renal Services Committee and Secretariat and they’ll answer your questions as well.

So I’ll just share my screen.

I should say Karen’s in the room as well. So Karen’s a dialysis nurse that works with us at NACCHO. People might know her from infrastructure grants and she also does work on COVID and also around renal disease, diabetes and cardiovascular disease. Now my screen’s not showing anything is it?

Maybe because it’s suddenly crapped itself. This was working two minutes ago. There we go. Okay. I need to keep pressing the button otherwise it will go away. Okay. So Rosalie can you give me a thumbs up if you can see my screen. Thanks mate. Sorry to point you out Rosalie. Just a familiar face.

Okay. So we’ve done the acknowledgment and hand over to you for these ones Mel.

Melanie Beacroft:

Great. So a couple of Budgets ago the Australian Government committed a bunch of money for dialysis on country. So the original Budget commitment was for $45 million to establish up to 30 four chair dialysis units. We have got some additional money to build some associated workforce accommodation. So if we choose a particular site and there’s not enough workforce accommodation we can build some housing for you as part of this measure as well. And I guess this is the Government’s recognition that dialysis and chronic kidney disease – there’s a disproportionate burden on First Nations people. There’s a lot of people displaced from their communities and their homes and they have to move into regional centres or big cities to get dialysis. So this measure is an effort to return some of those people home and build dialysis on country so that people can stay at home and live happy and fulfilled lives while getting the care that they need.

So what seemed like an easy ‘Let’s just pick 30 sites’ we realised it wasn’t so easy. So what we’ve done is we’ve partnered with NACCHO and with Jason to create the Better Renal Services Steering Committee. It’s a series of a whole lot of stakeholders from the ACCHO sector, First Nations people, kidney experts, some people from state Governments that all come together in a sort of partnership between NACCHO and the Department to discuss and recommend sites for future dialysis units. So as part of that I guess the Committee will come up with a list of sites that they’ll recommend to the Minister for Health and Aged Care and the Minister then hopefully has the decision about which sites we will proceed with.

So I will mention that we have had a couple of rounds for this measure already. So round one happened about this time last year. So we have picked six sites under round one. Purple House was the recipient of those six sites. So we’ve got a couple in South Australia in Yalata and Coober Pedy, we’ve got Balgo in Western Australia, and in the NT we’ve got Ti-Tree, Harts Range and Borroloola. For anyone out there with a keen eye actually at the moment round two is open. It’s a closed, non-competitive round with some sites that we recommended and that the Minister agreed to in Tom Price and Wiluna in Western Australia and Badu Island in Queensland. So that round’s currently open.

So this expression of interest process is to pick additional sites, so around three, maybe around four. It depends on how we run the rounds. Not sure yet. But this is to help the committee get a bunch of really useful information to help us understand where the need is and what sites might be the most viable.

I think that’s it for that.

So I guess in the very beginning what we wanted to make sure everyone was aware of is that this is an expression of interest process. We want to gather information direct from communities and direct from people who understand what’s happening in their place. So it’s entirely voluntary. It absolutely doesn’t guarantee that you’ll get a dialysis unit nor does it – if a community doesn’t input into this process it doesn’t mean that they won’t get one. So this is a way that we’re trying to augment the information that we’ve already gathered by trying to approach communities directly. So this is an information gathering exercise only.

So any information that you might need will be available on the Better Renal Services Steering Committee web page which is on the Department’s website. We will provide a link to that. And the form and the recording of this webinar will be uploaded tomorrow. So you can’t get the form just yet but you can get it from tomorrow. And we will as Jason said put some frequently asked questions up on that page as well. So if you have a question check and see if it’s something that somebody has asked before because we’ll post it on the page. Otherwise you’re very welcome to contact that Secretariat email address which is my team and we will respond to you and give you the best advice that we can. And the expression of interest process is going to be open for about a month. Yes. It is meant to be 19th of April 2024. Thank you for noticing our crazy typo. We’re just a few years out there. So yes you don’t have to travel back in time. So about a month. That’s not a super hard date. If there’s any issues around that please be in contact. This is so that we’ve got some time to collate all the information and the Committee to have a look at it. Great.

Jason Agostino:

So look we’ll go through this form. As I said it will be – sorry. I see Monique we’ve got your hand up. We’ll get to the questions at the end because I can understand there will probably be a lot. And so just want to make sure we get through the whole form and then we can ask questions at the end. So not ignoring that hand but we’ll get to them at the end of the thing.

So I guess the first thing is to recognise that we want communities to fill out this information as best they can recognising that there might be some information they don’t have or is incomplete. We do want you to submit it. I think we realise that services will be in different stages of readiness and we want to hear from as many communities about their need and as well as where they are in terms of their readiness.

NACCHO is aware that this current commitment is unlikely to fulfil the total need across Aboriginal and Torres Strait Islander communities in Australia and then it is then beholden on us as the peak organisation to continue to lobby the Government for more resources so that more people can have dialysis on country. So I just really want to stress that if you’re finding some of those questions that you can’t complete I do want you to put as much as you can and get that into the Better Renal Services Secretariat.

So the first question – and then sorry if you have more information you think that will be useful that isn’t captured in the questions that we’re going to go through there’s general comments added. As Mel said if you have a question to ask please email the Better Renal Services Secretariat and we’ll be posting anonymised frequently asked questions onto the web page for everyone to have access to the same information.

So the first question is really just about need. There’s a few components to that. The first is to the best that you are able to provide currently how many people in your community that are either on dialysis or are at stage 3B or worse with CKD, so for people at EGFR of 45 or less. The reason for this is that this is an existing data collection that occurs within the Northern Territory so we already have these data for some Northern Territory communities although we would like to verify it with information directly from communities. But we haven’t been able to get this type of information from other jurisdictions.

We’re also aware that many community members have already had to move to receive dialysis and there’s the potential that if a dialysis unit was in the community that they’d be able to move back. So if you’re aware of people that have moved from your community to receive dialysis we want them to be counted as well as the people that might need dialysis.

I forgot to do a shoutout to Rochelle, because Rochelle’s one of the members of the Steering Committee. So Rochelle Pitt I see logged in. And so she’s just one of the eight members of our Steering Committee that many people will know.

The second is about what are the current treatment options for people in the community that are needing dialysis. So for many people that is just about where you need to travel to receive dialysis and how far that is away from your community and difficulties with travel as well. But also if you are currently receiving respite or mobile services to let us know about that. That doesn’t exclude you at all from receiving funding for a dialysis unit but it plays into the decision making process about your current experience with dialysis.

The third question is around community support for a fixed dialysis unit in this area. And so with this question we’re looking for broad evidence that is relevant to your community on the support for this dialysis unit. We appreciate that communities all have different protocols for how they would indicate that support. So whatever you think is relevant for your community to indicate support for that we want to see that written and any evidence that you think is appropriate to provide to the Committee.

The fourth question is around land availability. So if there is land that is currently available or that could be made available for establishing a dialysis unit. And then there’s also a question around whether other facilities have been proposed on identified sites in the community. So what we’re trying to understand there is whether there are competing priorities for land use in the community. This is because we’re finding as we go on that land availability is a big concern about establishing a dialysis unit in many communities.

So to understand a little bit more there’s a follow up question about land tenure and leasing arrangements on identified land. So really want to understand about the estimated time to obtain land tenure, who are the decision makers in providing land tenure and the organisations out of the community that require consultation or endorsement to obtain land tenure. And again this is just about the feasibility of having an appropriate site that can be identified within the time constraints for this measure.

Then we sort of move on to community accessibility. The questions are really around are there any issues that impact accessing the community year round. So for many places we’ve got communities that have been impacted by natural disasters or extreme weather events or even just the normal wet season. So it makes accessibility difficult and just wanted to understand problems with accessibility and getting in and out of the community.

The next question related to that as well is around is there a healthcare emergency evacuation plan for the community. As all of you will understand people who are receiving dialysis are sicker than the general population and so we just want to be clear that there is an evacuation plan in place so that if people are receiving dialysis they’re able to receive the assistance they need in a medical emergency. So what those plans look like differs via community but whatever you’re able to convey about how that exists in your community.

In the unlikely event that you do not have a plan we’d like you to provide information on how the community would handle a healthcare emergency and what steps they would take to ensure the safety of its members.

We now move on to more information around the utilities. So next question is around power. Really just looking at how power is supplied, regular power outages in the community and how they’re handled. Again having problems with power is common. There are ways to get around it. We just need to be aware of it in the site selection process.

The next question is around water and is really about plentiful supply of fresh and safe water to use to operate the dialysis unit. We’ve got an estimate here around how much dialysis is needed based on current use from some of our existing remote dialysis sites. And so we’re talking about 624,000 litres per annum if we’re using a four bed dialysis unit which is what this measure is intending to fund for 24 dialysis treatments in a week. So there are options to support access to fresh, safe water to use the dialysis unit if you think that that is of concern. We obviously need to keep that in mind when making a decision about the suitability of a site. And that’s what the next question is really about. If there is not plentiful supply of water how could a reliable, safe water supply be established, and just putting your suggestions there.

Still on utilities. Sewerage and stormwater is important. So we just need to have information about how that is managed in the community. And then this next one is again about community lot plans and around what other things are planned in the community. So who maintains the utilities in the town and are there proposed works that may impact upon utilities. So what we’re thinking about there is new buildings, shops, schools or medical upgrades that may impact access to power and water. We appreciate that some communities may have things in place already and that can have an impact on the ability to add a dialysis unit into the community.

The next bits are around health workforce. So just whether there are known or expected challenges to finding and retaining healthcare workforce to operate a dialysis unit in this location, other than accommodation. As I said there’s additional funding to build accommodation if that’s required. All of our remote communities are going through workforce shortages. We’re aware of that. But if you think there’s particular challenges then just outline them.

And then would suitable housing/accommodation be available for the healthcare staff or would accommodation need to be constructed? That’s not seen as a negative at all. As I said there is specific funding allocated for staffing accommodation. It’s just for us to have awareness of that issue as we go into deciding on the dialysis units. So again that’s really related to question five and six around availability of land in your community as well. So the two sort of relate to one another. We need to know that there’s land available for both the dialysis unit and any accommodation that might need to be constructed as well.

The next is about the dialysis provider. So have you had any initial conversations with a dialysis provider? So there’s a few different models. Obviously Purple House and Kimberley Renal Services are two community controlled dialysis providers that are well established. It might be that you’ve had initial conversations with the state health department about them being the dialysis provider in your community. And so if you have we just want to understand where you are and how far those conversations have progressed.

The next question is around who would receive the funds and manage the building works if this project was successful in obtaining funding for a dialysis unit. We’ve had a bunch of different models in the first few rounds suggested and we just want to be clear about if your community is successful who will be overseeing the building of the dialysis unit distinct from providing the dialysis.

That’s the next question. So the next question is around who would provide the dialysis nurses and clinical support for the dialysis unit. So that relates to question 15 around your initial conversations. What we’re more interested in here is really the clinical governance and oversight as it says in question 18. We’re just trying to understand actually when we have this dialysis unit who will be the provider for that and how will you have clinical governance and oversight for the dialysis unit.

And then the last question is just about general comments. This form’s been through the Better Renal Services Committee which has a lot of people that are experienced in delivering dialysis but we appreciate that you may think that there is information that we haven’t captured that is relevant to our decision making that you want to convey to us. So we’re really keen for you to put down anything that you think that we have missed.

Melanie Beacroft:

I was just going to say before we go to questions I just wanted to make sure that it was really clear that this is not a formal application process. This is a really informal information collecting exercise. So please don’t feel like some half finished boxes or some scrappy notes will impact on the assessment of your community in any way. It’s not a formal application. You’re not being judged on your ability to persuade or sales pitch us. It’s literally about us trying to gather really grassroots level information. So please don’t feel like this is an application process. It’s not meant to be anything like that.

Jason Agostino:

So I’ve met my KPI which was to finish with half an hour to go. So with that we’ll just open it up to questions. If people wanted to raise their hands to ask questions.

Melanie Beacroft:

Do you want to start with Monique’s question?

Jason Agostino:

What’s Monique’s?

Melanie Beacroft:

Are these nurse led or home care?

Jason Agostino:

Sorry. So yeah. Do you want to talk about the intention of the - - -

Melanie Beacroft:

Yeah. So the intention is that they’re nurse led rather than home care facilities. We know that there are a bunch of existing self-dialysis sites particularly in the Northern Territory which are not used much. So our intention is that this is nurse led. However I say that in the spirit of if that is some other practitioner in your community that might be suitable including an Aboriginal health worker or practitioner or some other model that’s completely fine. But it is some kind of professional assisted hemodialysis.

Jason Agostino:

I guess I could just add to that. I’m aware that there are other models and we are really strongly working on how we support Aboriginal and Torres Strait people to have choice in what mode of dialysis they receive. But this funding is specifically for building four chair nurse led dialysis.

Rochelle?

Online Participant:

Hi there. Yes. Just a question. Once community has filled out their expression of interest and they’re happy with that do they send it via email or should they ring and have a chat with someone before just to look over it? I know some community mob might want myself and other health professionals to sort of go over it with them. It’s okay to call and chat with yourself?

Melanie Beacroft:

Definitely. Absolutely. Yes. People can call, be in contact. And certainly I can call and I assume Jason will be happy to have a yarn on the phone. But definitely in the end they have to hand in their expression of interest form by email so that we have it. But if before they hand it in they want to have a chat that’s absolutely fine and I’m very happy to make that happen.

Online Participant:

I was just going to say once they do submit though you guys will be in touch with them and keep them up to date? Yeah. Okay. Good. As long as that communication.

Melanie Beacroft:

Absolutely. So we will let people know that one we’ve received it, and then we’ll let people know what’s happening as a result of the forms. We don’t want people to feel like they’ve handed something into a black hole. We will keep everyone updated both on the website and then I think by email. Even if it’s to say we haven’t done anything yet. It’s still happening. I’m really big on giving people updates like that so they know where everything’s up to.

Online Participant:

Excellent. Thank you.

Jason Agostino:

I was just going to add I guess if people are asking questions we think are relevant to the broader audience we will be posting updates to the frequently asked questions. The purpose is we want to try and share as much relevant information with as many as possible. So as you’re going along I just do encourage people to revisit the web page where the information will be housed and through the NACCHO communications we’ll be highlighting things along the process as well.

Brad?

Online Participant:

Thanks for doing this folks. I was curious that you included MMM6 in the focus of this project. I’m from Red Lily in West Arnhem in the Northern Territory. We’re just in transition actually. We’re getting some new health centre facilities built in two currently MMM6 communities. We’ve been talking to Purple House about the difficulty of nurse led service provision which currently precludes MMM6. Just curious why you’ve included MMM6 in this project given that fact.

Jason Agostino:

Yep. Okay. So I guess the first is that starting from a premise of need we understand that there is a need for dialysis on country in MMM6 sites. What Purple House and yourself are referring to as the problem is that the existing MBS item for dialysis is only eligible for MMM7. So I sit on the MBS Review Advisory Committee and based on feedback from communities we will be starting a process to see if we can have that item expanded out so that it is eligible to if not all MMM6 sites to selected MMM6 sites. That is a committee that I’m a member of it. I don’t sway the result 100% so we can’t guarantee it, but we still want to understand the need. And particularly if there are models where you’ll be delivering the dialysis in partnership with the jurisdiction or health body then obviously the sustainability question becomes a bit different in that stage. So the full intention was originally around MMM7 because the Medicare item exists to fund that model but we’ve heard from members of the Committee that they want to hear from MMM6. But yeah. We’re fully aware of the problems of funding it as a fully ACCHO led model at this stage. Do you want to add anything Mel?

Melanie Beacroft:

No. Just that it is something that the Committee wants to pursue, is reform I guess of that MBS item. And that’s something that we will pursue but the outcome – I can’t guarantee the outcome. So we will ask for the item to be extended and so hopefully at a time in the future MMM6 will be eligible but we can’t guarantee that.

Jason Agostino:

And I guess the other thing is that the more information that I can present to the Committee the more compelling argument there is to extend that kind of eligibility out to MMM6.

Online Participant:

So in terms of the relevance of this process to Red Lily given the luxury of having some ready rooms newly constructed, we’ve dealt with that little part of the story, but would the funding extend to staffing it for a nurse led sort of arrangement and housing? Is it purely for building?

Melanie Beacroft:

So this funding is purely tied to the building. So it’s not operational costs at all.

Jason Agostino:

We haven’t talked about accommodation for established sites.

Melanie Beacroft:

I have been asked that. I’m pretty sure that we don’t have authority for that but I can absolutely find that out and I’ll post something up on the website. If there’s an existing site can we build workforce accommodation? I suspect the answer is no but I’m happy to confirm.

Online Participant:

Sure. That would be good. Thank you.

Jason Agostino:

Any other questions?

Online Participant:

This video will be available you were saying also on the site, the website for people that have missed out on it?

Jason Agostino:

Yeah. That’s right Michelle. We had around twice as many people register today than can attend so we’ll post this on the web page that’s in the chat and we’ll email all the people that registered as well to let them know when that video’s up.

Melanie Beacroft:

Now you’re on our list. So everyone will get an email from us.

Jason Agostino:

If you don’t mind the spam. We’re just trying to communicate well.

Melanie Beacroft:

And please pass on to anyone else who you think might be interested. Or again if they want to get in touch with us and have a yarn to see if they might be suitable or if they should put in a form very happy to have a discussion with anybody.

Jason Agostino:

I guess last call for questions I suppose. Rosalie?

Online Participant:

I’ve got to ask are there any kind of complementary measures to slow down the onset of new dialysis need and increase the opportunities for transplant?

Jason Agostino:

Yeah. That’s a really good question Rosalie and probably one of the reasons why I got given the co-chair role of this. Because I think one of the Committee members talks about these dialysis units hopefully being a temporary thing that gets us through the next 20 years to where we stop needing a dialysis on country because we’re able to prevent the progression of renal dialysis. And with some of the newer therapies that’s helpful but obviously the social determinants is really the big thing that needs to be impacted to address those.

So NACCHO announced that we will be putting forward a proposal for the Department to fund primary prevention and support you guys to provide better preventative services around dialysis. There was a second part to the question that I’ve forgotten.

Melanie Beacroft:

Transplant.

Jason Agostino:

Transplant. Yeah. So two of the members on our Committee are part of – I’ve forgotten the official name.

Melanie Beacroft:

The National Indigenous Community Transplantation Taskforce, NICTT. And so the Department funds that group and they’re specifically looking at the barriers for kidney transplantation for First Nations people and what they can do to overcome that. Because we know that the rates of kidney transplant are ten times less I think than mainstream population. So we are funding a group to figure out what’s going on there and hopefully we can fund them to take some action.

Jason Agostino:

Rochelle?

Online Participant:

Yeah. I just wanted to let you guys know we do have Aboriginal and Torres Strait Islander guidelines now, CARI Guidelines. So I’d love you all to encourage our dialysis units, renal wards to look at those Aboriginal and Torres Strait Islander CARI Guidelines in regard to chronic kidney disease and that support there because we need a change of culture also within the health system to help support our mob through their journey of chronic kidney disease and the supports there. Yes it’s also our primary healthcare space and I’d love to see more support there also. But any of you guys or clinicians that are working with our mob and within renal units please embrace those Aboriginal and Torres Strait Islander CARI Guidelines. Thanks.

Jason Agostino:

Good plug Rochelle. Thanks mate. I think they’re great. They’re Australia’s first anti-racist guidelines. It’s crazy.

Online Participant:

I don’t think they’re being taken up much yet but I mean as long as we get the word out there and people start bringing them out, reading them and encouraging staff to look at them and use them that will be deadly.

Jason Agostino:

Yeah. And look we’re about to do the – anyway, I’ll do some cross-promotion as well. So we’re about to have the NACCHO RACGP preventative health guide and we’ve taken a lot from the CARI Guidelines in terms of kidney prevention and those measures around earlier referrals as well as some other measures, and early detection. Cool. I’ll stop the cross-promo Better Renal Services CARI thing.

Melanie Beacroft:

I can’t see any more hands.

Jason Agostino:

Any other questions?

Cool. Look I appreciate that people will probably come up with more questions the more they’ve had time to one look at the template itself and actually grapple with answering it and the challenges that are there. Mel and her team are fantastic in responding.

So please do reach out to ask questions and as I said we’ll continue to update communications via the NACCHO measures as well as on the web page that’s there in the chat. Okay. So anything you wanted to add finally Mel?

Melanie Beacroft:

No. Just any question big or small, happy to receive it. So please just reach out and we’ll come back to you.

Jason Agostino:

Cool. So thanks everyone for your time. Sorry. Guy did you want to ask a question?

Online Participant:

Yeah. Look it’s not really a question but it’s just a problem that we face, is the collection of data. We’re sort of looking at our Jigalong community in the eastern Pilbara and we don’t know how many people are in Broome, how many are in Hedland, how many are in Perth or where they are because no one’s sort of collecting the stats. We believe it’s a lot higher than it actually is but no one can really tell us because they don’t bother asking the question ‘Where did you come from?’

So I don’t know. It’s a bit of an issue for us in trying to establish the need.

Jason Agostino:

Yeah. Look I work in Yarrabah, so that’s the community. I know Jason’s on the call, the other Jason, my boss at Yarri. And so we appreciate the difficulties with transient patients and understanding exactly where their home is I suppose. But we just want you to fill out the information to the best you can and tell us any limitations that there may be with the data. Trust me. We’ve been trying to find other sources for this information that we think are reliable and they don’t exist. The best quality information that we will receive is what you can give us directly from your communities. So we’re very happy to receive it with the limitations around it like you’ve stated.

Melanie Beacroft:

Yeah. Best guess is okay. Because it’s probably more accurate than what we’ve got which isn’t a lot to be honest. So a ballpark even would be fine Guy.

Online Participant:

Cool. We know that there’s an extreme need for even remote Aboriginal that is even exaggerated over Aboriginal from the stats that we’ve been reading. Yeah. It’s just getting the figures.

Jason Agostino:

Yeah. That’s right. You’re 100% right. As we get more remote the rates of dialysis are even higher but for metropolitan people they’re much higher than non-Indigenous Australians regardless. So we’re aware of that and that’s why this measure exists I suppose in one case.

Great. Okay. I will start wrapping up but feel free to jump any last hands. But I guess I just want to thank everyone for their time. I know how busy everyone in the sector is. I know how much strain you are in doing your jobs and really appreciate everything that you do and taking the time to listen to this. I just really want to reiterate that services will be at different stages of readiness and we want to hear from you at all your stages of readiness. Because I really want this process to be gathering a better picture around need so that we have good data behind us to advocate with Government around more resources for the communities.

Thanks for that. We’ll finish a bit early which is nice. Rose are you waving or hands up?

Melanie Beacroft:

I think she’s waving.

Jason Agostino:

Cool. And we’ll post everything up tomorrow. Okay. Thanks again.

Melanie Beacroft:

Thanks everyone.

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