And now to our panel.
Our presenters are the five working group Chairs. Each will talk to the issues their group addressed and the recommendations for system improvements that each group identified and proposed.
Speaking first is Dave Peters who is co-Chair of Equally Well Australia and a consumer representative and lived experience ambassador. Dave chaired the Lived Experience, Consumer and Carer consultation group.
Dave will be followed by Mark Morgan. Mark is Professor of General Practice at Bond University, Chair of the Royal Australian College of General Practice Expert Committee for Quality Care, and he chaired the Clinical Microsystems working group.
Joining us from Canada, where he is now located, is David Castle. Scientific Director at the Center for Complex Interventions in the Department of Psychiatry at the University of Toronto. David chaired the Mesosystem working group.
You’ve already heard from Malcolm Hopwood, co-Chair of Equally Well Australia. He Chaired the Macrosystem working group.
And finally, you'll hear from Chris Moy. Chris is Federal Vice-President of the Australian Medical Association, Chair of the Federal AMA Ethics and Medico-legal Committee and chaired the Quality Improvement group.
I’m now going to hand over to Dave Peters to discuss the consumer and carer perspective.
Thank you Rosemary.
This project began with a very big ambition. It was to change the health care received by consumers who lived with serious mental illness. And to do so through the work of clinical experts looking at how to achieve this very big shift in what health care is provided to consumers, how it is provided and how consumers are supported to access better healthcare.
This project could not have succeeded without the fierce ambitions of consumers and carers to change what has not being working for them and their willingness to be equally fierce in what advice and contribution to the work of the clinical teams on what needs to change.
As a group, we compile a list from our personal experience and network knowledge of what doesn't work for individuals.
Looking at this first slide you can see on the screen there, a summary of the barriers that exist in everyday access to health care for us.
Stigma and discrimination is a very big one. Many of us have serious physical health conditions ignored as a mental health manifestation. Perhaps thought to be a delusion.
We’ve had an intense focus on our mental illness and it seems only a mental health matters, and their physical health is not relevant.
It’s actually my quote in the report that I felt I’ve had to make a choice between my mental health or my physical health, and that is no choice at all.
Our ability to make choices and to have a say in our healthcare is often effectively denied or neglected.
We’re equally entitled to be engaged in informed consent to treatment.
We are left to navigate for ourselves, through the maze of psychiatrists, GPs and other health specialists if we've gotten that far.
So, even when our physical health is taken seriously or finally given attention, it can be so difficult for consumers to follow through a myriad of appointments and that's without the cost barriers that are often in our way.
We know how much support and reassurance we get from people who share the lived experience and who are there to help consumers connect to healthcare, stick with it and pursue those options that are available. We’ve succeeded in having peer workers increasingly embedded in mental health services to provide that support. But we want to see peer-worker support provided as part of primary healthcare, to build trust and confidence and to help individuals access and navigate better healthcare.
We began our work as a disparate group with some scepticism. We weren't sure how the process would respect our issues and listen to our group’s voices.
Can we move on to the second slide please?
We developed our measures of success as part of the process, and they were a really strong list, as you can see on the screen.
I won't repeat those lists to you, but I can't emphasize affordable access to primary healthcare has to be possible. Otherwise, many consumers will simply not have access to basic health care, let alone the better health care that this project has designed.
We must have informed consent from the consumer at every point in the treatment cycle and it must be a principal with quality care and individual rights.
When someone is very ill, then perhaps a carer or support person must be involved, and the consent of the consumer must be worked towards as early as possible.
We know that GP practices are hard pressed and not resource to meet the complex needs of consumers with both mental and physical health issues.
That will only change when GP practices are able to access purposefully designed funding for the health care and support that people with both mental health and physical health issues need.
Adequate and high quality healthcare will make a difference to the preventable and manageable chronic diseases, the consumers’ experience.
Yes, we know that this will require government and taxpayer funding, but it will potentially save lives and reduce preventable chronic diseases that also cost governments and taxpayers.
We also want people with lived experience to be involved in the design of better services and that needs consumers to be involved in the assessment of quality healthcare services that are developed and provided. Quality from our standpoint is just a significant in as clinical quality measures.
And we want peer support, worker support, peer worker support to be established at all levels of health care to help people connect to health services to benefit from healthcare, to be healthier and to have longer lives as a result of access to the services.
We want this to happen throughout their lives.
Our measures of success were provided to the clinical working groups as they begin to consider what changes we needed to address the problems we and they had identified, and there are more problems from the clinicians’ point of view in today's systems, that you'll hear about.
The consumer and carer group met with my colleague working group chairs, who will follow me in this panel discussion or panel presentation.
We had what should be described as a robust and indeed occasionally fierce and open discussion. Our measures of success were examined and the ways in which they could be met were discussed.
As a group we watched and gave feedback as the measures of success were then considered by the system-level working groups, along with the clinicians’ measures of success.
The project process of thematic analysis gave us the opportunity to workshop through all the outcomes of those groups and to consider the system framework for these changes to be achieved.
I’m really pleased about what the hand those measures of success on to all of those who want to see consumers and carers of people living with serious mental illness, to have equal opportunity for good health and for longer lives - to grow old, along with others in our Community.
And now I will hand over to Mark Morgan, Chair of the Clinical Microsystem working group.
Thank you Dave. I think Dave summarize some of the same thoughts and concerns that we had as a microsystem group and have observed in the delivery of care for people living with serious mental illness.
Microsystems are groups of health professionals that work together at the cold face. So a clinical microsystem might be a GP clinic or private psychiatric service. And Microsystems of the place where people access care. So they are the engine that delivers care. And any policy, any recommendations, any funding arrangements need to work at this level, if we can actually achieve change - meaningful change, and sustainable.
The microsystem perspective of the problems are that people fall through the cracks. People have to move between care provided in hospitals, and care provided in specialist outpatient clinics and care provided in general practice. It’s not joined up.
And we were concerned, in a fragmented system, that physical health needs get forgotten, and indeed that's what the terrible statistics that Malcolm described about a life expectancy gap, that’s the result of us not joining up care across the systems.
It's important for people's physical health needs are addressed in a planned and proactive way, that uses the whole team, and not just left to whether or not a person presents at a general practice clinic and asked about their physical health needs.
We need to be far more proactive and working towards an expectation of equal care.
We heard a lot from the consumer group about their concerns and experiences with the medications used in serious mental illness. And some of those consequences of that medication use need to be addressed but maybe the way to address those is through general practice and specialist mental health services working in a more coordinated way. And we saw that the gap of not working together left people exposed to the impacts their medication, longer and at higher doses than was necessary.
Often physical health play second fiddle to the psychiatric condition. We’ve heard Dave and Malcolm about what we call the diagnostic overshadowing - about the way that people's mental illness is almost used to define them and that we're missing an opportunity to look after the whole person.
And we've also heard how complicated and indeed costly navigating the healthcare system can be.
From a clinician point of view when urgent advice is needed, is it available? Can somebody see a specialist service when they need to see the special service? Or are they being dragged to the specialist service, when in fact primary care, working really well together with the specialist service - if that was that was operating the way it could work - there’d be increased capacity to deal with emergencies when they crop up.
Next slide please.
So the microsystem group spent our meetings looking at what recommendations can we take forward to make changes. And really this wasn't rocket science. We know how to look after the physical needs of people. We have guidelines and protocols for doing that. It's just they're not being used in this setting.
So, one of our recommendations was to use those existing guidelines, and to work out how they should best be used in people with serious mental illness, so that, together with those people and their carers, we look after at physical impacts of the medication and of the condition.
We took the model of shared-care arrangements, and this is a formal arrangement of a formal protocol, where you all know who should be doing what and when, so people are not falling through the cracks.
To help glue the system together we felt it was a big role, a multifaceted role, for a workforce that needs to be expanded, of community mental health nurses.
And if those community mental health workers were embedded in GP clinics, they would be able to support helping people moving between parts of the health system. Helping to support lifestyle changes. Helping to ensure and keep track, at the clinic level, as to whether we were monitoring physical health needs appropriately.
We also considered this issue of medication - sometimes necessary medication, but one of the problems we identified is that it can take a long time for that medication to be adjusted, changed. and if that adjustment and change could be done and monitored in primary care, under the advice of mental health experts, then there's an opportunity to reduce the time it takes for those changes to happen and for the physical impacts of medication and medication choice to be loud and clear within the system.
Lastly, if you don't measure it you can't know whether you're making a difference on whether you're succeeding. And so it's really important to us routinely collected data - GPs record it every day in a consults - to monitor how our Microsystems perform, but also to provide information at a regional level and a national level to help with planning and help with accountability.
It's a shame, it's a disaster, that there is such a life expectancy gap, and I think it's only through having accountability that's informed by data, then we can make a difference that will, I think, start to move us towards equality.
So this point I’d like to hand over to mesosystem group so that we can have a look at what regional supports will be needed in the system, thank you.
Thanks so much Mark. So I’m David Castle as was stated on up now in Canada, so I just like to acknowledge the traditional owners of the land here, and the first nations people.
This has been a very important journey for me personally, in that I have been for decades now trying to support people with severe mental illness, to get better physical health care. And some of that journey, I should say, has been very frustrating, because there has been a sense of lack of general ownership and this has been reflected in some of what we went through in terms of our process, as the mesosystems perspective. And I should also thank, but also sympathise with my fellow mesosystemers, because we were a little bit of the meat in the sandwich between the micro and the mighty macro.
Our job was to try and link these things, so what you'll hear for me is, in part, of course responding to Mal Hopwood’s comments at the beginning, and in part growing out of what Mark Morgan has shared with us.
There is no secret that the mental health system and the physical health system don't talk to each other very well. There’s no doubt that there's fragmentation and there's no doubt that that’s to the detriment of everybody, including clinicians as well as, of course, patients. And I’ll add carers into the mix. And there's no doubt that we all think that we can have plans which could get around this fragmentation and that we could identify people to take the responsibility, but unfortunately, as I said earlier, taking responsibility is a hard task. When I worked at St Vincent's Hospital in Melbourne, very fine hospital, for 20 years, we went through a process of trying to get this ownership and there was a lot, unfortunately, of handballing. You know, it’s someone else's issue: it's the GP’s issue; it’s within medical structures, you see the registrar's issue.
And I should actually thank my registrar, former registrar, Akanksha Sharma, who is the repertoire for this group. She did a fine job, and unfortunately can't be here this evening because of COVID - having to deal with COVID emergencies at St Vincent’s.
The fragmentation I’ve already talked about, the complexity of the healthcare system, you know as a doctor and I worked in Australia, for a very long time, even now I don't fully understand the systems and if, I in my position, didn't understand the systems, then there's plenty other people who're not going to understand the systems.
The other thing which was very striking and which came through in our discussion was this inequitable and inconsistent access to allied health staff. And you know it's pretty clear that if you’re really going to affect change for, in terms of physical health parameters, cardiovascular risk parameters, you need people who come from a specialist position and bring ancillary advice. So, for example, including people from the diabetic nurse specialists into a discussion of a person with a person about management of diabetes; exercise physiology often forgotten, but hugely valuable and important; physiotherapists. And we did have input from these groups of individuals and these very important voices were that they often weren't actually heard very well in the mix of everything else. So systems which are fragmented, systems which are hugely complex, systems where there are unclear roles and systems where there's inconsistency of access and input are doomed to failure.
Well are they really doomed to failure, or should we be much more optimistic?
Next slide please.
We did come up with some recommendations and I said I learned a lot from this process, I also felt very inspired by this process - not only leadership which was shown by Rosemary and James and others, the great input we had from our working group. But most importantly, I don't want to sound remotely patronizing about this because it's not meant to be, the most important pivotal moment for me in this journey was the meeting which all of the Chairs of the different groups had with the consumer and carer group. For that's when it really struck home for me that gee, we couldn't just sit back and say it's a terrible mess, we actually were obliged to listen properly and to try and work out things which can be done and should be done. It’s not going to be an easy task and tonight is just the beginning actually. It’s the beginning, in Churchillian terms, it's the end of the beginning. Now the rest of it is about actually getting this implemented.
So two main themes here about recommendations, one is a theme around data and sharing of data and sharing of communication. And you know that that is, also there's a whole story about how data should be shared, not just between professionals but also with patients and careers, and it's so empowering and so important in terms of the longitudinal trajectory of chronic health problems and what is brought to bear when and how and that truly this is informed by ongoing data at an aggregated level, but also at an individual level. So there's a lot about that, within the recommendation and about the importance of performance data, that these spur people along.
And the other piece of it was how we might be able to work with an imperfect system to empower patients and carers and clinicians to communicate better and effect better care for the individual. And what was resonant with a lot of us was this notion of a nurse navigator .we might not like the term nurse navigator necessarily, but it does is nicely alliterative and has a very nice conceptualisation in the sense that it's somebody who can actually help people - it's their job to help people - negotiate the complex systems and to access the proper care. So you could call it a chaperone, if you prefer, that's maybe a little bit flippant and disrespectful and I didn't mean to be.
But that's the nature of it, but somebody who will actually help to map need, to ensure that the person themselves is empowered and supported to advocate for themselves and to make sure that there are getting optimal physical health care.
One last thanks before I leave and that's to Dave Peters because I never knew there was a collective noun for psychiatrists, but he has shared what that is. He said ‘a maze of psychiatrists’ and I think that's quite appropriate terminology for these difficult structures and complex structures through which we expect our patients and careers to perambulate.
So I’ll stop there, and again thank you so much for your attention.
I need to pass it back to my very good friend and colleague Mal Hopwood who you've already seen, but two doses of Mal is always better than just one dose of Mal, so here he is.
Thank you, David.
Thank you for reiterating the sense of us as part of being a part of a maze. My goodness.
I’m going to present the macro-system perspective, now as part of this process.
For those of you not familiar with the microsystem of approach the macrosystem really reflects recommendations and issues at the super-regional level and essentially we're predominantly talking about government funded systems that operated at that highest level and clearly have a profound influence on healthcare delivery and outcomes. and in presenting these findings, out of course like to acknowledge the contribution of the group that I got the lovely opportunity to chair and my rapporteur Caitlin Fehily for her contribution.
In reflecting on the problems that we highlighted at this level, in some sense the themes are entirely consistent with those previously discussed, just reflected further at this highest level of organisation.
So we again focused on the lack of integration and clear communication channels across healthcare services and their administration and governance. and we know then the outcome of many reports, including those from the national Mental Health Commission and perhaps more recently in my home state, the Royal Commission into Mental Health in Victoria, that actually the whole notion of a mental healthcare system is perhaps incorrect in many ways, and what we're actually talking about is a collection of many systems who's cross-talk capacity is far less than desirable and leads that falling through the cracks we've heard about before.
So a theme can be reflected here that that can lead to an avoidance of responsibility, we were really wanting to emphasize in our roadmap, this is everyone's responsibility to solve.
So while we have a number of recommendations that reflect the role of primary care, we certainly don't want to diminish the role of the specialist care system and other non-government organisations and both state and federal governments.
I think in considering this problem it's not worthy to reflect that the ship study - the Australian study of people with low prevalence, severe mental health problems, showed that many of them received the care from the specialist sector, just as many solely from the private sector, and many currently from neither. So in thinking about our solutions to these problems, we need to acknowledge that we can't assume where people are currently receiving their care.
We’ve already reflected in great depth on the theme of stigma and how it impacts, and really here we need to acknowledge that if the problem is a challenging one to integrate mental health care, when we combine the other elements of the macrosystem that are responsible for physical health care, we only multiply the challenge.
It’s a challenge clinically, as already reflected with the diagnostic overshadowing issue of how do we attribute concerns to mental or physical health, that requires wisdom and clinical integration.
But we need to acknowledge that stigma can be seen across those aspects of both physical and mental health care and clearly a consumer and carer representative emphasised that they still feel that when they present their physical health care on occasion they feel like the concerns are diminished solely because of a diagnosis or a mental health problem that's already in their file.
One of the greatest challenges that we outlined at the macrosystem level has already been referred to at the other levels and that's about the capacity to develop good data. So we clearly wanted the development of a good state-wide and national nation-wide data system to measure better the extent of this problem, and, in particular in a dynamic way to measure the success of any implemented measures. If we don't measure what we're trying to achieve, how do we know we're progressing in any way, shape or form?
To move to our recommendations, then from the macrosystems perspective, we emphasised the need, at a macro level, for all to recognize the model of shared care. And this clearly goes across some traditional macro system barriers in Australia, including the role of both Federal and State governments. So we want to ensure that that theme of shared care is central to all initiatives.
We’re calling for the establishment of a national data system to measure and improve the physical care of people with serious mental illness.
What this will look like will need an appropriate consensus process and the engagement of a range of current data systems that look at activity across primary care, specialist care, non-government, and physical health care, as well as state-based systems like mortality data.
Some of the most powerful data that I referred to previously in this arena, has come from those jurisdictions where the capacity to bring data systems together currently exists and we'd like to see this replicated on a national basis. Again if we don't do that linkage work we won't be able to judge the impact in solving this dreadful problem.
We think the problem is in many ways, still a hidden one and historically, one might perceive that this problem is hidden away behind the walls of our previous institutional-style care. There's perhaps truth in it.
The deinstitutionalisation, however, has not lead to better awareness of this problem at a general public level. And I certainly reflect on my experience when leading the advocacy campaign for the College of Psychiatrists, being struck by the number of times that I would talk about this data and talk about the reduced life expectancy and the common reaction was one of surprise if not astonishment from those who weren't in this space, even, sadly I’d have to say, for many who do work in this space, the common reaction was, I assume that much of that reduced life expectancy was about suicide, and suicide prevention remains a very important thing. But actually the greater proportion of that mortality is due to poor physical health. We need an educative program to let that be known; that will engage all in the effort to reduce the problem.
There’s clearly also a need that I’m suggesting there around training and education professionally across the range of disciplines that are involved in this area of activity.
So we're calling for a reorientation of the system to highlight the comorbidity of mental and physical poor health for all relevant professional associations and organisations, and this spans the workforce from psychiatrists, psychologists and other allied health workers, nurses, primary care, and indeed the peer workforce as well. All need to be very aware of this problem and aware of the potential solutions, and we think working together, hand in hand with professional associations, is central to that effort.
At that point I’d like to pause and hand over now to Chris Moy who's going to describe some of the work from the Quality Improvement area of the process.
Thanks so much Malcolm.
Look I’m a GP and you can see I’m actually coming to you from a real living, breathing practice, and I think the main aim of our group was really to try and connect reality of where I work, where we're extremely busy with a whole number of other things, a whole number other priorities working in a situation where we're often, you know, seeing a lot of patients consecutively, and quite disconnected from the rest of the health system, how do we reorientate our systems and thinking to actually get to where we want to get to with regards to improving the health of individuals with significant mental illness.
Now today and I’d like to thank the members of our group, which was Kimberly Fitzpatrick, Paresh Dawda, Dale Ford and Tetyana Rocks. I was clearly the dumb one in the group. My job was to actually sort of to wrangle the experts into providing the information required which they did incredibly well.
So the issue is, is how do we get primary and secondary care to do what we want them to do?
The problem is, as Dave pointed out, is that, unfortunately, in dealing with the serious mental illnesses and in treating those people with medication with a lot of side effects, potentially, we often put the health needs of those individuals to the backseat, it's relegated to the backseat, and it isn't really on the radar and it's not embedded into our thinking.
and part of the problem is that we don't even identify those populations, we don't have data about the measures we need to consider and about this sort of issues - the things like hypertension, the diabetic risk - all those things are not really put together and we don't really have a mechanism at this stage to convert the evidence that there is out there into real practice on a day-to-day basis.
So, the first thing, we don't have this data and we don't know what to measure, and this is a critical foundational step that needs to occur, and we don't have the measures embedded in our system and what we need to do is to do this in a practical way not to do this in some new whiz bang expensive model which really often fails in general practice, we need to somehow bring it in so it becomes normal practice - there's something that we can actually consider with every one of our patients who has a significant mental illness and to make sure that we take care of their health needs on a daily basis and that we do this as an ongoing basis, and that we do this in upskilling and utilising the current workforce in both primary and secondary care, but also bolstering it with, as has been indicated before, not only a specialised additional workforce which could actually assist us but also supports consumers to be enabled and empowered to the greatest degree.
I’ll get you to pass on to the next slide if you don't mind.
Now, the first thing that we looked at was really the key is to not reinvent the wheel, and this is to use the concept of collaboratives, which is the idea of using teams from multiple health facilities, working together to improve performance on a given topic, supported by experts who can share evidence on best practice and over a relatively short period of time, over various cycles over a few months or a year or two, to really embed quality improvement within each of those health facilities. With ongoing coaching and he used a rapid cycling of change over a period of time to gain that improvement and again to embed what we can in a place like this.
And we looked at two interconnected models, where there is precedent.
So the first thing is within primary care to look to a model very similar to the primary care collaboratives model, which has worked successfully in the past, where practices get together, you know leaders from practices that have a shared interest in this get together and they start talking about how they'll improved with an expert that can assist them in doing this.
In amongst that, the key aspect that we really need is the use of registries. Now we already have the data on our computer systems and we can create these registries to first identify the populations, we need to identify and those are, for example, those with those diagnosis of significant mental illness, but those also placed on medications, such as, for example, antipsychotic medications which can have a really severe effect on individuals in terms of the health.
To be able to then identify them, be able to recall them to be able to manage their health, not just about their mental illness, but to actually focus on their health.
To be able to evaluate the progress by being able to, you know, put together the measures that we want to consider, and in doing this, what we use we wouldn't reinvent the wheel, we want to look at the measures that are currently in in use of the moment, through the practice incentive program using the QI measures that are already there that we actually, at this moment, can report back to our PHNs.
The next thing is to support this with nurse navigators which has been mentioned before, and something which we've never really used before is peer supports.
To be able to, for example, develop groups within our practice which with leaders like nursing leaders or general practice leaders to have group sessions, maybe with peer support, would be an amazing thing.
And I think the thing about this is if this all fits nicely with two aspects which you've got to consider the first is, is that this is very much in line with the sort of work by the current primary care steering group, of which I’m a member at the moment, looking at how we sort of change practices from, let's put it in simple terms, conveyor belts of you know, seeing patient after patient, to try and develop new models which will actually assist patients in maybe ways which are going to be better for them in hitting the targets that we want to.
The other thing is, that the important thing about this is we're not talking about a model which is going to be particularly expensive. But we do need to align the incentives that are already there to try and support this, and that is the QI PIP, to maybe realign some of the NBS items to support this and also, I mean what would be great in a practice like this, is to be able to have as an incentive to have the support of a nurse navigator and also peer supports.
So it's not an expensive model, it's been done before, and we can actually align the incentives with also what's going on in a broader planning level of government.
Now, I think there is a parallel type of model which could also occur at the acute, or let’s say secondary care level, and that was put forward by Kimberly Fitzpatrick, so I will thank her, that the using the registries fantastic registries that are already there such as the quality improvement data systems used in New South Wales, and to develop a very similar collaborative model through the secondary and acute care service which could also work hand in hand with the primary care services at GP level.
But using again collaboratives model but possibly with a more intensive and support level, possibly because these patients may need a greater support and follow up as they go along.
In amongst all of this there needs to be ongoing levels of governance and leadership and we aren't just talking about at the very top of the food chain here, we definitely need that to be able to oversee and make sure that we're hitting the right direction, but leadership can filter all the way down, and that is at LHN, PHN level, but I think, just as importantly, at the GP level to develop GP leaders in this area to really start to promote this as a really critical matter that we’ve just taken our eye off the ball or have never focused on enough. And I think it's a great opportunity to be able to do that.
So look, I hope I’ve sort of a laid out a sort of a picture of what can occur. I think it could occur in a place like this. It just needs to be not too threatening, we need to use things that have been used before. We need to align the longer term planning for the health system, such as the primary care steering group, with the sort of incentives which are not just about making money, they're about actually helping general practitioners and general practices support the care of our patients, and in doing so not reinvent the wheel too much, try and use the sort of systems that are already there, such as the data systems within practices and also larger systems such as that are available in secondary care now.
So with that, I hope I’ve set out a picture and I’ll pass on to Rosemary again to close off this session.
And thank you, Chris, and thanks you to all panelists Chairs, for their presentation of the detail of the roadmap.
So you've now heard what it is that has been put together as the way forward to achieve change in this major issue.
We’ve recommended in the roadmap, the development of system infrastructure to support the changes that have been talked about.
And that's the development of a national mental health clinical quality registry, a home for an office of mental health and physical being equally well - mental and physical health outcomes.
We’ve talked about shared-care guidelines that will need the work of colleges and others to bring them together.
So that's the architecture that needs to now develop to support what Chris is described as a non-threatening, supportive, expanding, resourcing system of care for people who need it.
We're about to move to the next session of this webinar where we will hear from the Minister for Health and Aged Care shortly, so I’m going to hand over now to the Vice Chancellor of Victoria University, Professor Adam Shoemaker to take this discussion forward.