Dr Karin Lines Good afternoon everyone I would like to acknowledge the Burramatta-Gal people of the Eora nation the traditional owners of the land that we're meeting on today and pay my respects to Elders past and present. Thank you for attending this session. It's one that's very close to our hearts. My name is Karin Lines I'm the Executive Director of the Mental Health Branch within the New South Wales Ministry of Health. I'd also like to acknowledge those here today who are living with a mental illness and those who care for people living with a mental illness.
Our session this afternoon, Embedding Change a Distributive Leadership Model is about Pathways to Community Living Initiative, which is a key component of the New South Wales Mental Health Reform program which has been running from 2014 and will go till 2024. This is a state-wide approach to enabling people who have had a long stay in a mental health inpatient unit - that's over 365 days and sometimes many, many years and is to assist those people to move to the community.
Today I'm joined on the stage by three of my colleagues who are going to be taking you through the session and let me introduce them. First is Bec Davis who will awaken us to the need to bring hope and a life in the community to people with complex illness, next Dr. Peter McGeorge who is our Clinical Lead in this program and he'll talk about embedding change by leadership at all levels through empowering enabling staff as well as consumers and families to see hope and envisaged change and take an active part in making it happen and our third speaker Ms Deborah Hoban who will demonstrate our learnings that we have made over the last few years and the results in the to two years into the initiative.
With over 300 people participating in comprehensive assessments and over 80 people having moved to the community in the initiative it's really showing that we've started to change the way we work in our hospitals and Deb will introduce and illustrate those changes through a person's story. If there's any time left over and certainly with such a big audience which is very heartening we'll take some questions so first of all I'd like to introduce Bec Davis to you to speak.
Bec Davis Hi everybody I'm Bec and I'm going to share with you some of my experiences as a mental health consumer, as someone who has experienced long inpatient stays in a mental health setting. My perspective will reinforce the importance of having the opportunity to live in the community as well as the need to bring hope to those who experienced long inpatient stays, and in doing so this will introduce you to what lies at the heart of the pathways to community living initiative and while I'm sharing my experiences with you I encourage you to keep in mind that every consumer has their own personal story a unique story and my presentation today is just one example of that.
I spent a large part of my life from the ages of 17 through to 25 in an inpatient setting this was intermingled with as well as both preceded and followed by involvement with community mental health services. It was two days after my 17th birthday that I was first admitted into an adult acute inpatient service. I was not at the time, I was living at home with my family and attending school as much as I could. Growing up in a small country town I was quite naive to the wider world I suppose you could say, still a child in many respects. I was told by my community case manager and my mother that I had to go to hospital because of the law. I was initially admitted as a voluntary patient although I'm not sure about what part of it was actually voluntary. I had no idea of how the system worked or where I stood in relation to that. Unfortunately, I would quickly learn how the system worked and my world changed quite dramatically, looking back I still struggled to make sense of how I essentially became institutionalized within the mental health system.
And that's where this personal reflection comes in if only I could have been a part of the sunset the night wouldn't seem so dark I'd like you to imagine for a second that someone you trust has told you to close your eyes and they've reassured you that when you open them things will be better, the world will be brighter but when you do open them life as you knew it had changed, you've been swept into an entirely different world. A world of utter darkness and you're not quite sure how you got there. You feel all sense of control and choice has been removed and then you look in the mirror and don't even recognize the person staring back at you.
In the first week of being at hospital I wrote in my diary that I was scared and confused I just wanted to go home. I wrote I miss everyone but don't feel a part of that life anymore this is me now, that was after one week. In no way could I imagine that my life would take the direction that it did, everything that had once been so familiar to me started to become unfamiliar and the unfamiliar became just so very familiar. I don't think that anyone expected that nearly a decade later my transition into independent living would still be continuing.
My family and the service were heavily focused on keeping me safe yet with this perception of safety came isolation, disempowerment and disconnection. Lack of alternatives to inpatient care was a major barrier in regards to formal services as well as informal supports. There were times when I may not necessarily required inpatient care yet there wasn't really any suitable alternative, there wasn't that middle ground. At the age of 24 I had never lived independently before and my experience of participating in the community as an adult was extremely limited and it also pretty much lost all my social connections in the community and this disjoint between hospital and community in part explains why I've never really felt my age even years after my final inpatient admission. I still felt like a bewildered insecure teenager who had no idea of what she wanted to do with her life yet at the same time I felt like a lonely old woman whose life had passed her by and I was I felt I was in a continual period of decline and every passing birthday was just a further reminder of that ongoing loss.
I felt I had lost freedom, choice, normality, my identity, opportunities and memories seemingly everything. In one of my poems titled I remember I wrote I remember wondering if I'd ever escaped these stony lonely walls of isolation in despair and I remember the shame the dread and the fear wondering how I'd be remembered if I would die here. I was just yes I very lost and scared I'd never find a way home so I would like you to think about what home means to you when I think about what home means to me I think of it as a place of belonging, a sense of acceptance, source of shelter, stability and comfort. A place where I can just be and live a life of my own choosing in a place where I can envisage my future, yet because of the lack of connection to the community it wasn't just a matter of finding my way home it had to be built from the ground up which was an extremely daunting task when I was simultaneously questioning if I had the energy or capacity to survive in this confusing world that just seems so full of judgment.
I felt confined in a space where the normality that I craved just was painfully out of reach I just wanted to be a normal person live independently go to work, drive a car, have friends, have a future. I desperately just wanted to blend in with the crowd and often I thought there has to be more to life than this and there has to be more to me than this. And gradually my search for a normal life began, it was a long unsteady process which continued until eventually years later I was living independently and I was employed, I had my driver's license, I had wonderful friends and I had a future and I was finally but by my own definition normal but the frustrating thing about that is just as I'm nearing the peak you know the pinnacle of normality I gained enough perspective to realize that normality doesn't really exist. It's all of the people that used to try and reassure me that you know we all have weaknesses, flaws, histories and struggles they were right. To me it seemed a bit like an anticlimax but then I realized what I've been searching for was not a normal life per say but a meaningful life, a life of purpose. I've been pursuing normality but what really mattered to me was connection, belonging, acceptance and hope. I wanted to feel a part of life and to be validated as a contributing Varian member of the community yeah and one of that sense of home and I believe that's something we all inherently desire and deserve as human beings.
I wanted a life that included a future not just a past and a present I didn't want my life to be summed up by that opening line in my patient file. Rebecca is a 25 year old woman who is well known to the service. I would emphasize that as health professionals you often see people at the lowest point in their lives. You get a small snapshot of that person's life at that moment in time, get each individual there's also many other things to many other people.
A person with a past made up of unique combination of achievements, losses, fond memories and perhaps traumatic experiences and each individual has a future with hopes, uncertainties, accomplishments and challenges yet to come. I believe a sense of hope and a belief in human potential both vital aspects of mental health care in healthcare more generally. Due to the disconnection and despair I was experiencing I had a hard time finding a sense of hope or belief that life could be different, I've forgotten what life outside the hospital environment felt like. So as you can imagine the hope and belief of those around me was crucial. There's some very patient, understanding and resilience staff who somehow believed that I had the capacity to create and live a life of purpose and meaning outside of the hospital environment and they were life savers.
Together we were able to defy the dismal expectations I had for my own future as well as challenge the fears and assumptions that other people held for my future. These staff members truly embrace the notion of recovery and the very principles which underpin the pathways to community living initiative. The idea that people can and do live a meaningful life characterized by inclusion, dignity, choice and empowerment despite the presence of ongoing symptoms was fundamental to my personal recovery and growth and that largely took place in the community.
I believe that more doors must continue to be open for people who experience long inpatient stays so that these people can imagine and realize new possibilities. If you've always been told that a door is locked and if you've come to believe that that door can't be opened, then you just stop knocking you become disempowered and don't actually realize what's on the other side. We're going to show you some short extracts from the acknowledgments of lived experience that the PCLI dialogue days and in these acknowledgments living in their community is emphasized as a fundamental human right, as a place where the greatest healing occurs and where new life chapters can be written.
The way things have been and the way things are is not necessarily the way things have to be. With commitment and new ways of thinking it is possible for many people who currently residing inpatient mental health services to live a life of meaning characterized by choice, inclusion and dignity within our communities. It's possible for these people to find their way home. Thank you.
Video – Daya Henkel Those we support and work with the journey of recovery is not an easy one and those were the lived experience face unique challenges in this world. I want to acknowledge all those wonderful creative, kind, intelligent people who have been denied appropriate care because they have been deemed too challenging, too disruptive, too demanding or too attention seeking. Your voice matters. The programs we're designed with consumers and carers are important, they affect real people in real communities, our communities. You have the power to make a difference and decide to change the system.
Video – Jemima Isbester As we know it's a fundamental human right to live in the community and work in the community and enjoy the same advantages as every other citizen and I hope that you all here today as I will be, think critically about how we can best support people to begin new chapters of their lives in the community.
Video – Bec Davis I'd like to acknowledge the resilience and courage of all those with lived experience of mental illness. The road can be rocky, it can be lonely but you're not alone. The more where I would encourage openness and togetherness the greater inroads we can make towards breaking down the updated taboo and persistent stereotypes that still surround mental illness.
Video –Ashley Reynolds PCLI is a program designed to support people experience enduring and complex mental health issues who have been in hospital for more than a year. Hospital should be the last resort not the only option. Hospital is a place for acute care but most of our healing occurs in the community surrounded by family friends and nature. PCLI is dismantling the structural and systemic barriers and changing the belief systems that were keeping people in hospital and forces us to reflect on how we are caring for people who have been in our services for many years. With the right circumstances, structures, partnerships and supports in place we can all live in the community and become part of the fabric of society. Community living is a possibility and it's not about forcing people out, like it has been done in the past, it's about choice, picking the right time and moving from best care and hospital setting to better care in the community. Being segregated from society as a mental health patient is hurtful, harmful it hinders progress stifles potential and hinders progress to the individual and society. PCLI is built on the foundational belief that things should and can be different. I want to acknowledge all the consumers carers clinicians and allies who worked hard to bring PCLI into existence despite the barriers hardships and challenges. I'd like to acknowledge the lived experience of consumers and carers in the room today our trials our triumphs and our power to the champion change. Thank you.
Dr Karin Lines I'd really like to thank Bec for sharing your story with us. Bec, that was truly inspirational thank you. And now I'd like to introduce another essential member of our team Dr. Peter McGeorge, and Peter is our Clinical Lead in this program and he's going to talk about how it's absolutely important that everybody at every level takes part and understands that they are the leaders that everybody has a part to play in change leadership. Thanks Peter.
Dr Peter McGeorge Thanks Karin and thanks Bec and to the others that were involved in making those videos, I think we should those of us that are involved of mental health consider ourselves really fortunate to be in an age where consumers are actually driving their own care. The people that have spoken already have actually said what we're trying to achieve, and they've also gone beyond that they've talked about why, as much as there is a need for some for a few actually to have hospital inpatient care. That that care should be provided on the shortest base as possible because terrible things happen to people the longer that they are actually in hospital, in fact their recovery is ultimately jeopardized as I think Bec illustrated, so I'm going to talk a little bit about the how and perhaps referring back a little bit to the what but mainly the how.
So, first thing is that I'm going to cover very briefly the background to the PCLI. I'll make some brief reference again to the key characteristics of a major program of reform because we consider this a major program of form. Back in the late 1980s, I was involved in closing a couple of psychiatric hospitals and setting up community services in Auckland, but the way that the New South Wales Health has gone about this is extremely comprehensive and careful. It's something that I think we would have liked to have been able to done to have done back in those old days if only we knew what was possible.
I want to look a little bit at what the evidence is that influences successful reform and those include some of the barriers I guess as well and finally and I've got to just keep my eye on time I want to make reference to distributive leadership because that's what we're working with now and it's part of that collaborative environment that people earlier this morning had made reference to. Where were we in 2014 well for those of you that know about it the Richmond report was actually written back in 1983 and we've spent the past 20 or 30 years working away gradually sometimes more rapidly than at other times, getting to this point. There is a voluminous literature that was best exemplified and summarized by Helen Killaspy who's professor of psychiatry at University College London, who's part of this project. That really indicates that community care is the right way to go for the majority of consumers and we heard some reference of course to the fact that the kind of bleak walls the environments that still exist now they just produce in institutional behaviour of a kind that doesn't really encourage hope for the future, let alone really starting to think about what are the steps that are necessary to achieve better futures and to help people find their way home.
So the two driving aims for the PCLI we've referred to already, they involve assisting people this is the remaining 380 people in hospitals that are dotted around New South Wales, to find bit more appropriate and enhanced services. In many cases if not in most cases living in the community, and the second one and this has been made reference to as well is to change the practices of people working within mental health services and I think this is where it becomes really exciting because that has to be collaborative, and it has to be driven by consumers.
In terms of the characteristics of major system change just to think about it. It does involve the participation of multiple stakeholders both within and without the system. The changes have to be system-wide and they're not they're not only an encompass breath but they've got to encompass depth as well, and ultimately what we want is for people to live the best lives possible regardless of what their condition is and that may fluctuate over time, but to have the same rights and opportunities as we all do living in society. And the third part of the change process is the extensive amount of coordination that has to take place with mechanisms to engage and align stakeholders. Now the New South Wales Health in terms of its commitment to this process because you need commitment from the top, is to is to envisage a process that takes three to eight years.
In Auckland we close those hospitals and set up Community Services in two years and that unfortunately has been the case in many places around the world, fortunately there was a good result ultimately but there were many problems that I think could have been avoided. I don't want to go too much into this because I think we should I need to finish up fairly soon, but there are a number of things that influence successful change. One is the characteristics of innovation and other was the setting within which the implementation takes place, thirdly the individuals involved, fourthly the process by which the implementation is accomplished that is and this goes to the heart of the distributive leadership prices that we're undertaking, and the fourth is the consequences of change so there's got to be demonstrable benefits of the change process.
Distributive leadership is something that has been developed fiercely within education and it is what it says there is a need to have leadership from the top and a small number of people who are driving the change process and I think people like Robyn Murray the project manager for this project with the support of people like Karin and Murray Wright the chief psychiatrist, are absolutely essential but what we're trying to do through the change process is to involve as many people as we possibly can across the whole span from consumers to carers to staff to community and also to those community providers like the NGOs. And so there's got to be leadership at all levels and just to be brief to give you a flavour of what we mean, there's been reference to open dialogue days. About every three or four months we get everybody together that has been involved in the project to talk about what progress they've made to talk about the problems but also to celebrate some of the successes. There's a project managers group so all of the people that are actually responsible for the nuts and bolts of the process they meet also on a regular basis.
My role has been in terms of it at least having been there at some point in time and sharing some of that knowledge that has been acquired sometimes with difficulty, so just to quickly cut to the chase so I involved myself in the meetings that are set up at the various sites. I try to get to know everybody that is critical in the projects and I actually involve myself not just in meetings in the kind of care coordination meetings but I've sat in on multidisciplinary meetings as well and my job is not to tell people what to do but to encourage them to do the right things, and finally is the process of identifying potential leaders and also resistances and all of us are doing that Deb who will follow me, is doing that very much in terms of her role, so the idea of distributive leadership it's not say that there isn't a bit of disruption that's involved is really important and it's something that hopefully we'll see the results from in a positive sense in the years to come. Thank you.
Dr Karin Lines Thanks very much Peter and mindful of our time Deb. I invite Deborah Hoban up to the stage to take us through the last actual processes
Deborah Hoban All right, so the PCLI approach actually focuses on these four quadrants all of them equally important not one more important than the other and also all of them essential to really supporting this change process and for us meeting our goals. An enormous amount of activity has happened in all four of the quadrants over the last two years that's why we're all looking so tired probably and that's really set the building blocks of change this is moved us closer to our aims of enabling people to have a home but also a mental health service that can support and sustain that change into the future.
The processes that we've developed in terms of the project processes have meant that there is strong leadership within the LHDs, at the level of ministry and beyond. That we have collaboration and innovation at all levels LHDs, ministry, other partners working side-by-side solving problems, sharing successes, sharing struggles and developing new resources all the time to try and meet our aims. There is a really genuine sense across the state of being very focused on let's do this let's make this work, and new ways of working we're starting to see now are really starting to become conceptualized as business as usual which is very exciting.
In the getting-to-know-you processes where we've come to is, we have over 300 people now have participated in planning and assessment processes with their carers and their clinicians. We know more broadly and more deeply what people want, what people can achieve and how we might support them to get there. Over 80 people have moved from hospital after many years some of them to home, and they're being supported to establish a very valued and a meaningful life in the community ongoing, it certainly does not stop just when you get to the community.
In terms of service development 13 clinicians have been added to mental health teams and we're in the process of developing a number of services to support people as well so more options in the community and more support to enable people to make options work and we have three MHACPI units, who's a middle health age care partnership initiative and residential transition units in partnership with the aged care sector, and that's been you know hugely positive and has made a real change for people, and we're recording what's happening in such a way that we are able to actually learn about what we're doing. We were looking at well how are we going with this and also how are people going so we're really following this story through and what's happening at a person level, what's happening at a unit level, what's happening at an LHD level and also at a state level.
In order to illustrate this a little bit more and I'll this I'll have to move through this story but I'd like to introduce Pam to illustrate this at a person level. So, Pam was born in the 1950s she had a pretty typical life I guess whatever that means but she and she left school had a few issues at school left school at 15 went straight into what she considered to be a really enjoyable job in clothing manufacturing actually embroidering farm clothing machine embroidery. She was able as independent was able to you know manage her finances looked after herself looked after a home, and there's a great story about how she organized this trip to New Zealand with a friend and had this guided tour at that time you know it'll quite a young age in her youth she in her early 20s have very sadly her mother died here she was very close to she was close to her whole family and following that was when Pam started to develop symptoms of mental illness. She had her first admission to hospital after a suicide attempt and essentially then for the next ten years she and her family and the clinicians around her tried and tried and tried to find somewhere that could support her in the community, to live that value valued life that many for life. She went from one hospital to another she stayed at various places she tried group homes at the time but on increasingly she was having much trouble looking after herself and there was also, she had some behaviours that other people found very difficult to cope with. She at that time she had was very persecuted by delusions and she would at times lash out she would have time since she would scream and she was quite often quite verbally aggressive, so this was really hard you know ten years trying to find trying trying trying no lack of effort there you know at all, but there just was not whatever was needed was not available to her and this is really I guess the cracks of PCLI finding options for people.
So in 2015 PCLI really I guess started to be rolled out across the state and there was really, there was a strong leadership at all levels as we've talked about. Living in the hospital was no longer okay so the expectation was that we find the solutions that we look for the barriers and then we worked together. The way that PCLI has been rolled out across the state has meant that there's lots of collaboration and as Peter referred to bringing those people together has actually really built strength and commitment in that way. So essentially what that meant for Pam was that through the services that developed the extra clinicians that she we actually she was able to find something that was important to her. Really importantly she managed to be somewhere close to one of her siblings she was actually able to engage in an environment that was really suitable for her the hospital was not, it was loud it was busy etc and she actually manages now she's been there for about six weeks she's and much more settled she's having a much happier life and her family a really really pleased to see her now in one of the MHACPI units engaging in activities and doing things that she had not done for 37 years. Thank you.
Dr Karin Lines I’d really like to thank my wonderful team who we probably noticed could probably talk until 9 o'clock tonight about the wonderful work that that we've all been doing and more in particularly that that they've been doing, but what I will do now is to thank you very much for your interest and thanks for coming to this session which we are very passionate about and we will continue to drive forward with mental health reform.
Current as at: Wednesday 3 June 2020
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