[On-screen text: Being believed, being heard. Stories of compulsory mental health treatment in Victoria. Report launch – November 2024.]
Rowan McRae (Executive Director, Legal Practice, Civil Justice, Access and Equity): … We appreciate the leadership, wisdom and resilience that arises from Aboriginal and Torres Strait Islander Victorians approaches to social and emotional wellbeing.
I'd also like to acknowledge First Nations speakers and attendees joining us today, with special thanks to the First Nations consumer who generously told her story through this report highlighting the lasting adverse impacts of compulsory mental health treatment, including when consumers are unable to access supports and services on Country.
As you may know, today is the official opening of statewide treaty negotiations between the First People's Assembly and the Victorian Government. The key guiding principle in those negotiations is that decisions about Aboriginal communities, cultures and lands should be made by Aboriginal people. I support Treaty and I'm excited to see this historic milestone in what will be a shared journey that has been centuries in the making.
Many consumer advocates, some of whom have sadly passed, have fought for many years for changes to the mental health and wellbeing system. We recognise them today also, including those we remembered yesterday on the Trans Day of Remembrance, noting that LGBTQIA+ consumers are over-represented and that gender diverse lived experience experts involved in this project spoke to us about issues of respect to understanding and inclusion in mental health services.
Many of you attending this webinar today are staunch advocates working daily to build a mental health and wellbeing system that's rights based, strengthens support and supported decision making and promotes personal recovery.
Thanks for joining us for this important discussion.
I also want to welcome some distinguished guests; We're joined by Katherine Whetton, the Deputy Secretary of the Department of Health, and Matthew Carroll, the President of the Mental Health Tribunal.
I particularly recognise and extend a warm welcome to all of the project participants and lived experience experts who've been able to join us for this webinar today.
We're mindful that the topic we're covering today is a heavy one and that many people joining us have lived or living experience of compulsory mental health treatment or supporting or working with people in the mental health and wellbeing system.
We encourage you to engage in today's webinar in a way that feels safe for you. We'll email some support numbers after the event.
Please go gently and thank you all for your commitment to working collectively towards a mental health and wellbeing system that respects people's rights and supports personal recovery.
I also just wanted to offer a note on language; we use the terms mental health issue and mental, emotional and social distress based on advice from our Independent Mental Health Advocacy service, IMHA, and the Speaking from Experience lived experience advisory group. We recognise that the individuals and communities may prefer different ways of describing their experience.
I'm going to give you some context for the session today. I'll share some information about the services we offer to consumers of Victoria Legal Aid and with our partners, and then I'll talk a bit about the report we're launching.
Through our work, Victoria Legal Aid and the Independent Mental Health Advocacy service, which I'll call IMHA, from now on, which I think most people are familiar with, we work with consumers who are subject to or at risk of compulsory treatment in Victoria.
Our work is informed by a consumer advisory group Speaking from Experience and our consumer consultants. We partner with people with lived experience, expertise of mental health issues to co-design, co-deliver, co-research and co-produce.
We've long been advocating for systems reform in mental health and wellbeing, from our contributions to the royal commission to more recently our submission to the Review of compulsory treatment criteria and alignment of decision-making laws.
One of the recommendations from the royal commission, Recommendation 56, proposed that IMHA should become an opt-out service. And alongside the launch of the report today, we're also celebrating 12 months of the opt-out model of access in IMHA.
Under this model, IMHA is notified about everyone subject to or at risk of compulsory treatment and can then offer them free support and advocacy. From September 2023, when the opt-out model launched, through to the end of August in 2024 ...
This year, IMHA received 50,412 automated notifications for 10,934 consumers subject to compulsory mental health treatment.They're big numbers. During the same period, IMHA has provided services to over 7000 consumers including over 80,000 services like information, referrals, coaching for self-advocacy and advocacy. IMHA has also delivered information, supported decision making and right sessions to thousands of people, including consumers, clinicians, carers and supporters.
And this includes development of statements of rights to be provided in 10 situations, including the consumers experiencing treatment orders or temporary treatment orders, voluntary patients, ECT and forensic patients, with translations in 25 community languages available. And together with the department developing protocols under the Mental Health and Wellbeing Act.
At Victoria Legal Aid, we're also pleased to be supporting an increase in access to legal representation for consumers who appear before the Mental Health Tribunal, and that was also referred to in the royal commission's Recommendation 56 following a high-level modelling report that La Trobe University did and then a co-design process that the department commissioned.
VLA has coordinated a further co-design process, working with VALS, the Victorian Aboriginal Legal Service, and the Mental Health Legal Centre, lived experience experts and other diverse stakeholders, and this co-design process has resulted in the Mental Health Legal Rights Service model.
We're in the process of implementing that across the three legal service partners.
The Mental Health Legal Rights Service is a consumer centred and collaborative model for providing mental health legal services in Victoria. It aims to increase and improve the legal information, advice and representation for consumers at the Mental Health Tribunal, to improve consumer experience and outcomes of legal services and positively influence the mental health and wellbeing sector and the protection and promotion of human rights through enhanced collaboration and systemic advocacy.
We're really pleased to have our partners from the Mental Health Legal Centre and VALS joining us here today.
So we're here today to launch the Being believed, being heard report. This report shares the stories of 16 lived and living experience experts of compulsory mental health treatment in Victoria.
The project was supported by the Department as a separate and consumer-centred contribution to the Review of compulsory treatment criteria and alignment of decision-making laws, and to broader mental health and wellbeing reform. I'm sure you'll all agree when you read the report, it's incredibly powerful, emotional and clear in its overarching message.
We appreciate the support of the Department of Health allowing us to undertake this project to ensure that consumer voices are central to systems reform. This is something that VLA continues to advocate for and will actively continue and support through ongoing reform.
Today we're going to hear from two of the project participants, Matilda and Simone.
We also have a panel discussion to reflect on the key themes and solutions that are identified through the report and that will include a lived experience expert, Simona, who will join us today.
Unfortunately, the Honourable Ingrid Stitt, Minister for Mental Health, wasn't able to join us live, but she has provided a short video message to officially launch the report and open this event, so we'll cross to that video now.
[Pre-recorded video starts]
[On-screen text: Victoria State Government]
Ingrid: Hello, I'm Ingrid Stitt, the Victorian minister for mental health, ageing and multicultural Affairs.
I welcome you all to the launch of the report, Being believed, being heard - Stories of compulsory mental health treatment in Victoria.
I'm sorry I couldn't be with you in person today, but I'd like to begin with a heartfelt thank you to the 16 lived experience experts who shared their stories in this report.
And thank you to those from the Speaking from Experience consumer reference group who provided advice and guidance on this project.
Thank you also to Victoria Legal Aid and the Independent Mental Health Advocacy service for your important work and for hosting today's event.
The Royal Commission into Victoria's Mental Health System made it clear people with lived and living experience must be at the heart of our mental health reforms.
By centring people with lived and living experience, we can transform our mental health and wellbeing system to ensure that treatment and support is compassionate, respectful and responsive.
This starts with making sure consumers and meaningful partners in decision making and ensuring consumers rights and preferences are upheld at every level of our system.
That's why the Allan Labor Government is investing $14 million every year to ensure all consumers at risk of compulsory treatment are offered non-legal advocacy and access to legal representation.
Hearing your voices as we have in this report, is vital to our vision. Thank you for working in partnership with the Allan Labor Government to achieve system transformation.
We remain committed to realising the vision of the royal commission and will continue to work alongside you to build a more supportive and responsive mental health system. Thank you and enjoy the afternoon.
[On-screen text: Victoria State Government. Authorised by the Department of Health, 50 Lonsdale Street, Melbourne]
[Pre-recorded video ends]
Rowan: I'd like to thank the minister for taking the time to prepare that video for our event today. Recognising the importance of this work, I'm now pleased to introduce you to Matilda.
Matilda is one of the younger project participants whose story is featured in the Being believed, being heard report, illustrating the key themes of assessment and misdiagnosis, the importance of consumer awareness and understanding of rights, experiences of the Mental Health Tribunal and the need to strengthen accessibility and inclusion, including for neurodiverse and divergent young people.
Matilda has generously shared part of her story by video for today's event and we're going to share that with you now.
After the video, we'll be joined by Helen Makregiorgos, Associate Director of IMHA, and Wanda Bennetts, Senior Consumer Consultant with IMHA, who are going to co-facilitate the panel discussion.
[Pre-recorded video starts]
[On-screen text: Matilda’s story, I wish I knew I had rights, above logos for Victoria Legal Aid and Independent Mental Health Advocacy (IMHA).
[On-screen text: Acknowledgement of Country, This video was made of the lands of the Wurundjeri, Bunurong, Kabi Kabi and Jinibara peoples. We acknowledge the Traditional Custodians of the lands across Victoria and pay respects to Elders past and present. We recognise the continuing connection to country, culture and identity and the importance of self-determination for creating better futures for First Nations peoples.]
[On-screen: Matilda appears on screen. She has bleached blonde straight hair to her shoulders and is wearing a white top.]
Matilda: My name is Matilda Van Elst and I am participating in this project because I experienced compulsory mental health when I was a teenager. In that time, I had over 30 admissions in 11 months in a children's hospital for an eating disorder.
[On-screen text: Why is it important for consumers to know about their rights?]
Matilda: I never knew that I had rights and looking back, I really wish someone had told me. I believe my time in the healthcare system would have looked a lot different. I was involved in decisions, however none of my preferences were followed and many were not acknowledged.
It is so great that companies such as IMHA are ensuring that young people are now aware of their rights and advocating for consumers, just like my mum tried to do for me at the time.
At the time of my admissions, my mum was the only person in my corner and we were never aware of my rights. Not only was I laughed at, but my mum who was advocating for what I needed at the time, it was laughed at and belittled by multiple doctors.
So hopefully, now that young people and their families are becoming more aware of their rights, they will receive the respect they deserve.
[On-screen text: What do you know now that would have made a difference?]
Matilda: I was never told I could write an advance statement of preferences. It was never explained to me what one was. It was never explained to me that if I wrote one, my preferences had to be considered.
It was never explained to me that if my preferences weren't followed, the doctors would have to provide in writing why they didn't follow them. Instead, when I asked for things that were helpful for me, I was told it was the eating disorder voice talking and my preferences were refused.
[On-screen text: In what ways was your dignity respected or not respected?]
Matilda: It's my right to have my dignity respected and promoted whilst receiving mental health services. So I don't understand how one of the head paediatricians for adolescents in a major hospital can tell a child to plan her own funeral.
How is that respecting and promoting my dignity?
[On-screen text: What would you have wanted someone to say or do in that situation?]
Matilda: I respond best to an approach that is care-focused and actually provides me with hope that someday I would make it out of the system, rather than an approach that was intended to make me feel terrible about myself.
[On-screen text: Did you ever get an opportunity to be heard?]
Matilda: My voice was taken away by never having the opportunity to have a tribunal hearing. I was discharged every two weeks right before a tribunal hearing would have been required.
It makes me question whether I even met the criteria to be receiving compulsory treatment or if they wanted to silence me even more by taking away my opportunity to have a voice at the hearing.
My mum was always my biggest advocate and would always speak up when I wasn't heard. When she did this, the doctors and specialists would tell her she was colluding with the eating disorder and was enabling the illness. My mum was the reason I recovered. She was the only person that listened and valued what I had to say in regards to how I needed my recovery to look.
I was always my own person and mum knew that the stock standard treatment wouldn't be what was most helpful for me, so we fought against the system until the end.
[On-screen text: How are you now?]
Matilda: And now I am happy and healthy and living my best life in Queensland in the sunshine with my beautiful puppy.
[On-screen: Matilda smiles and moves to turn the camera off.]
[On-screen text: Fairness, Care, Courage, Inclusion, www.legalaid.vic.gov.au, appears above the logos of Victoria Legal Aid and IMHA.]
[Pre-recorded video ends]
[On-screen: the co-facilitators and panellists are all visible on the same screen, each appearing from different remote locations]
Wanda: Hi, are we ready to go now? Yep. Hi, sorry we couldn't hear the video playing in the background. Sorry about that delay.
I'm Wanda Bennetts, I'm going to be one of the co-facilitators alongside Helen Makregiorgos this afternoon.
I work as the Senior Consumer Consultant for IMHA and I also do a bit of work with the Mental Health and Disability Law team as well.
Helen, would you like to introduce yourself?
Helen: Thanks Wanda. I'm Helen Makregiorgos and I'm the Associate Director of IMHA.
Wanda: OK, so I'd like to introduce the panellists. First of all, I'm pleased to welcome Simona.
She's a lived experience expert who is one of the team members in our consumer advisory group called Speaking from Experience. Simona's lived experience of the mental health system and her fellow members guides Victoria Legal Aid's work through the Mental Health and Disability Law Team and IMHA.
Joining Simona is Mary O Hagan. Mary was a key initiator of the psychiatric survivor movement in New Zealand in the late 1980s and was the first chairperson of the World Network of Users and Survivors of Psychiatry. Between 1991 and 1995, she's been an advisor to the United Nations and the World Health Organisation.
Mary was a full-time mental health commissioner in New Zealand between 2000 and 2007 and she established the international social enterprise called Peer Zone. She's written an award-winning memoir called Mad Dismayed Me and was made a member of the New Zealand Order of Merit in 2015. Mary is currently the Executive Director, Lived Experience in the Mental Health and Well Being Division at the Department of Health in Victoria.
Next up is Lived Experience Commissioner Jackie Gibson. Jacqueline's primary identity as that of a mental health care and supporter. Her personal experiences in this role have not only shaped her understanding of the field, but also allowed her to actively participate in governance and decision making within the health sector on a national level.
Jacqueline's unwavering commitment to protecting the rights and dignity of people with mental health issues is a cornerstone of her work. This commitment is evident in her past work at the Mental Health Tribunal as a community tribunal member and her dedication to safeguarding individuals in the public mental health and wellbeing system. It's a driving force in her work today as a lived experience commissioner.
Helen: Thank you, Wanda.I'll be introducing the last two panel members, so we also welcome Associate Professor Sophie Adams.
She's Victoria's chief psychiatrist, consultation liaison psychiatrist. Sophie has worked in mental health in public and private, primary and tertiary for over 25 years and has held senior leadership roles across the sector.
Last but no means least, we've also pleased to welcome Professor Penny Weller, also known as Penelope Weller from the Graduate School of Business and Law, RMIT. Penny is also the chair of the Programs Committee, Academic Board as well as the health lead at the Centre for Business and Human Rights. Penny's key research areas include human rights, mental health and capacity law, and the Convention on the Rights of Persons with Disability. Penny has been a community member of the Victorian Mental Health Tribunal since 2013.
And I'm going to hand over now to Wanda.
Wanda: Hey, thank you.
So Simona, we'd like to start with you first today and hear from your experience.
Could you share with us some of the things that resonated with you from the, from reading the report, what we can learn from it and why projects like these are important?
Simona: Thanks for the question, Wanda. Well, to start off with, to say that this report resonated with me is an understatement. It was as if I was reading my own story over and over again.
I read echoes of disappointment, confusion and pain and it really evidences that this is a systemic issue or due to compulsory treatment. People often do not feel supported, instead feel abused, violated and traumatised.
I'm a survivor of many traumas and compulsory treatment. For me and as mentioned in the report on the increases pain, it's trauma upon trauma and it therefore often creates distrust towards mental health services. There are so many examples of what resonated with me.
For example, this report also indicated that when people reported concerns, often they were disregarded by treating staff. This resonated with me because I expressed my concerns regarding one hospitalisation because I wanted to refuse medication and instead of listening to me I was labelled non-compliant. I was forced on the ground, restrained by multiple security guards and I received a super painful injection and was dragged into a seclusion room to be locked up for hours upon hours.
As human beings, surely we are intelligent and empathetic enough to know by now that compulsory treatment is not the answer.So why is this still regularly happening?
The report resonated with me as I know what it feels like to lose your voice, but it feels like to be silenced due to over medication, coercion, etcetera. The trauma for example, restraint in all its forms as I mentioned before, causes so much harm.
On a personal note, I still have nightmares and flashbacks as the report said. I know the contrast of feeling like you're disappearing mentally because of medicines, yet physically gaining a lot of weight in a short time span.
I know what it feels like to have things taken away from you, your freedom to move, your decision making, and even fresh air.What we learned from this report is that people need to be built up, not stripped from their sense of dignity and human rights. We also learned that unfortunately, in a lot of ways, people haven't been listened to in the past and harmful practises are still occurring.
It's society's responsibility to provide an environment that's conducive to healing for all human beings. Projects such as this one are important, for it highlights the importance of keeping up the momentum of change. Also, all the voices are like arrows that point out what should be improved within society. There are lots of great suggestions offered in this report.
And lastly, as I said, all the voices are like a unified alarm bell signalling loudly to our society that change needs to occur. People with lived experience deserve to heal. I'd like to applaud all lived experience expert in this report for speaking up and all those that created a platform for them to be heard and believed.
Thank you.
Wanda: Thanks, Simona. I know that's not easy. I really appreciate you sharing that today.
Jackie, I know this year you've made it a priority to listen and learn about the perspectives of families, carers, supporters, and communities.Through this project, we heard from lived experience experts who experienced compounding disadvantage, including with intersections across mental health, disability, housing, and homelessness.
What systems, processes and policy change do you see as needed to create better outcomes for people who experience mental health issues and those close to them?
Jackie: Thanks for the question Wanda, I think it's, it's what has really come through very loudly from reading this report and from the work of in the first year of the Mental Health and Wellbeing Commission is the amplifying of consumer voices and embedding lived experience.
Not only through consultation, but real engagement with your peer workers, with your family and care consultants, your consumer consultants and really listening to those voices and embedding and hearingwhat they have to say.
And I think there's also a great opportunity here to really build on the work of the new Mental Health and Wellbeing Act and looking at the understanding what the role of the principles are in relation to how we make decisions around treatment.
The involvement of consumer voices, their rights and understanding what their rights are, but also the opportunity to engage with family and carer kin to get their own understanding. But I think the uptake of practitioners of understanding what those principles are and be guided when they're making decisions will really help to influence decisions around treatment and discharge and planning.
Wanda: Thanks, Jackie.
Mary, next question’s for you, thinking about the demonstration of consumer voice and leadership through this report, including through the articulation of solutions and your inaugural lead experience role in the department.
What are some of the of your reflections on the role of consumer leadership in reforming laws and criteria governing compulsory mental health treatment in Victoria and in ongoing accountability and reform?
Mary: Well, that's a long question, but first of all, I'd really like to acknowledge the people who shared their stories and the report. I found it a very heartbreaking read.
It really was really, you know, a real reminder of the terrible impact that compulsory treatment processes can have on people and and the enormous power imbalance that occurs when state coercion is called in to solve social and other problems. So, I just want to thank those, the people, the 16 people on there and the people around you for, for sharing your voices about terribly painful experiences.
Now the question, Oh yeah, consumer leadership. So basically, I'll just want to start off by saying that in Victoria we have and I'm jumping from something that's very profoundly painful to a kind of into another sort of realm here. But I'm talking about the post royal commission environment for the development of lived experience leadership.
And I think what happens is that what's happening in Victoria, when you look across the world and other states of Australia is pretty remarkable.
I've talked to people in the UK and the Netherlands, Belgium, America, Canada, New Zealand, other states of Australia and there's nothing really going on. And that compares with all with what's going on in Victoria in terms of, you know, the funding injections for the peaks, having their presence like the lived experience branch in the Central Mental Health Administration, the legislative roles for the commission and the Victorian Collaborative Centre.
You know, the growth of executive roles in both NGOs and clinical services and the fact that we've got to people's eyes sort of water when I tell them that we have $11 million per year in our budget for lived experience workforce development. So I just think we need to remember that.
I know there's a lot of gloom around at the moment and also a lot of pain, but we do have an unprecedented opportunity. Of course, there's always problems and issues, but we do need to celebrate this and protect it. And we can't guarantee that this opportunity will go on and on either. So that's the other thing.
So, you know, I mean, you know, so we can really use our expanded leadership potential to bring about change, whether we're working as an external advocate or as, or as an internal and working internally like I do. And the kinds of things that, you know, I've been around for quite a while now.
And some of the stuff I've learnt about change is that, well, it's bloody hard. And, Wanda's nodding because, you know, you've been around nearly as long as me. And so as change agents we really need, I think, I believe we need to default to working relationally by building bridges.
I think there is a space for more oppositional approaches, but I think they only work well, you know, in mass sort of protests like you had a, there was a huge protest of 35,000 people in New Zealand yesterday. I think that sort of oppositional politics really works.
I think default wise though, when we're working in more intimate settings, our relational approach is far better. And then we one of the big things, mistakes we made when we were early on in the movement is we were very isolationist.
We didn't really trust many other people. And for some reason, and I really now believe in creating coalitions with people, we might not agree on everything, but if we work in partnership and create coalitions and, and that's very powerful for governments because if they see the same message coming from different stakeholders, they'll really sit up and listen.
I think critique is important. But, but, but I do think we need to go beyond critique to imagining and designing new, new approaches. And I think we need to get the understanding, get to know the people we're trying to change so often. And I, and I've been, I, I've been guilty of this myself.
So often we try to caricature them and we just say they're those bloody people over there or, you know, but in fact, the human beings, often with very wedged power who are living in a lot of constraint. And we need to try and understand what drives those people, what constrains them, what they're afraid of and how, you know, what's going to really change their minds and their ways. And I think we need to think about the outcome of what we're trying to achieve and make it tangible and achievable.
And finally, I think we need we need to be in it for the incremental long haul and accept that our change work will not always get what we want.
And, you know, compulsory treatment is one of those long-haul issues.
And in Victoria though, we have a really unprecedented opportunity post the royal commission to to support the, the recommendations to eliminate seclusion and restraint and to reduce compulsory treatment.
And you know, the mental health improvement program at Safer Care Victoria is leading programs to fulfil these recommendations and we, you know, we need, they need our leadership and support and influence over those. So that's it from me. Thanks Wanda.
Wanda: I'll hand it to Helen now.
Helen: Thank you. Sophie, over to you.
Thinking about the overarching themes of the report, as other members have talked about as well already, and the impacts of compulsory treatment and the goals of the royal commission and then you act to radically reduce compulsory treatment, which Mary also just mentioned.
Can you talk about your priorities, what your priorities are to support the mental health and wellbeing sector, including the medical and psychiatric workforce to achieve the royal commission’s goal?
Sophie: Sure. So you know, as a psychiatrist, this is a complex panel to be part of, isn't it? And I'm the people Mary's talking about trying to understand.
And I think it probably is worth, you know, reiterating that mental health clinicians share a lot of, if not all of the same concerns about the system. And that most of us have been working our whole career in a system that's under resourced and incentivised to do things in certain ways that actually are often at odds with our teaching, our own values and our own compassion.
And I think that we do the best that we can. We're constantly balancing needs values, the values and needs of individuals, but also of their families. And often individualistic and collectivist rights are pulling us in different directions. And we're trying to make decisions about what we do and when we are coercing in the light of trying to balance all those competing needs.
I think we all agree, the whole sector agrees that the principles of the Mental Health and Wellbeing Act are good principles and that the, you know, dignity of risk and the importance of autonomy are invaluable.
And we know that agency and autonomy are necessary for mental health and for flourishing. So we absolutely want to get to that point and to be supporting that as much as possible. And it's a very dubious responsibility using the Mental Health and Wellbeing Act.
A year ago we were at a Vic branch meeting of all of psychiatrists and we debated this. You know, should psychiatrists actually be the ones in charge of this? And a good half of the room would very happily give up the power because what we actually want to do is help people. And, you know, it's often put pitting us against people and making it harder for us to get that relationship that that Mary is talking about that's so important to a therapeutic improvement.
So keeping in mind that, you know, 'power over' is unsatisfying to the person having the power, 'power with' is much more meaningful for all of us.You know, I think we are as limited by societal tolerance of risk and risk aversion. The courts, the lawyers, WorkSafe, the coronial system, all of these things are impacting on the decision making of mental health clinicians and particularly psychiatrists.
So I just want to say that we're as much a part of this system as everyone else is, and we are doing our best and acknowledging that. We don't need the report to know that a lot of harm is done by the Mental Health and Wellbeing Act and that the way the system is structured is that it does cause harm in an attempt to prevent harm. And we're often trying to figure out what the least worst thing to do is. And that's not an easy thing to do and none of us actually know.
So keeping in mind all of those things, our priorities are really awareness and making sure that the whole sector is on board with this.
And yes, there are people at different stages of contemplation. There are people that have spent their whole career in a system that is designed a certain way and who have had to live that way and justify it to themselves. And they find it very hard to shift their goal posts because they have, you know, been convinced by the system that this is the right way to do things.
So that's a big shift we're asking people to do, to reflect back on their past career and see that maybe they could have done things differently or better. We are absolutely working with the authorised psychiatrists on their responsibilities and trying to think about how we can help them to understand the principles of the Act.
We're working with IMHA to do some training very soon. I've certainly done training at different levels already multiple times. The OCP is very much working to make mental health visible and credible to hospitals, execs, CEOs and the general community because that's one of the ways we can shift risk aversion and risk tolerance.
And we believe that if we're seen as credible and we're advocating for some of these things, then we'll be able to make better decisions and allow people to be less risk averse. We're getting a dashboard so we can monitor the use of the Mental Health and Wellbeing Act and we can use it in our quality improvement with services.
We've just written a white paper that's going to be published next week that is all about how clinicians think about risk.And it's trying to reset and give permission to clinicians to take more risks, to allow people to make their own choices, to do more shared decision making. And that's really important there because it sets expectations for the rest of the community that expect us to behave in more coercive ways.
So we're trying to give clinicians a bit of space to make good decisions and decisions in line with the principles of the Act.
Mary mentioned Safer Care Victoria doing a big implementation science project on trying to reduce rates. And we're absolutely supporting, as I said, IMHA to do some training.
So, you know, this is a plan. We're going to change and navigate this plan as we go. And we're going to do it as much as we can in partnership with everyone because in the end, human beings are social.And I agree with Mary, this is about relationships and us seeing people rather than making decisions arbitrarily or without seeing the human at the heart of it.
It's about us trying to engage and understand what that human needs and trying to work with them to get to a position where they feel safe. I think we make meaningful change together. Thanks.
Helen: Thank you, Sophie.
I think continuing with Jackie, IMHA's data across the first 12 months of the Mental Health and Wellbeing Act has shown that First Nations people are overrepresented in notifications, which includes restrictive practises and compulsory treatment, with 5.15 per cent being Aboriginal or Aboriginal and Torres Strait Islander.And that's probably not surprising to most people here.
I'm interested in what you say is critical for mental health and wellbeing system to be able to provide culturally safe services for First Nations people, including what we can all do practically to address the trauma, discrimination and individual and systemic racism that's experienced by First Nations people.
Jackie: It's a really big question. And I sort of, I am deeply saddened as I am constantly on a daily basis with these kinds of information that come to us.
I think we need to acknowledge the impact of referendum and the impact that it's had community in relation to, you know, discrimination, particularly in health services and understanding psychological distress that has caused people. And we have this expectation that Aboriginal and Torres Strait Islander seeking help in a mainstream setting.
We're expected to trust you and to do the right thing by you, and yet we all know that only a certain percentage of you did not actually vote in a way that would support our rights.So I think there needs to be acknowledgement of the impact on that.
And then moving forward, I think in order for, for community to feel safe in a mainstream hospital, we need to understand what a social emotional wellbeing approach to mental health is, understand how important culture and our spirituality and understanding that connection to country.
I think more increasing the number of Aboriginal and Torres Strait Islander health workforce in our mental health systems is really important in the use of Aboriginal liaison officers, but also also referring back to appropriate and culturally appropriate safe services.
And I think the, the, the royal commission made many recommendations in the, in relation to what good cultural safety should be and how it should be. But I also would remind practitioners who might be tuning in that they have a, they have a commitment to upholding culturally safe practise.
If you're accredited by AHPRA and regulated by AHPRA, and then in fact racism can be called out.And that that's really important. But also referencing the Mental Health and Wellbeing Act and the principles, there are several commentaries around and principles in relation to cultural safety and how important that is.
But again, it's understanding the connection to community, understand connection to culture, under understanding that connection, that listening to someone who's or who is also Aboriginal is really helpful. And so we need to increase the number of people that we see in hospitals and that we get the right care in the right place.
I think advanced statements of preference are really important. I think supported decision making is really important. I think if we all have a commitment to rights based, strength-based recovery, those things are really important.
And once we understand that and commit to it, I have hope. But there are a lot of ways that cultural safety are embedded in our accreditation standards, in our daily practise.And we need to remain, remember that this is a lifelong journey and that we don't get always get it right at the first stage, but we need to make a commitment to it.
I think that has answered your bit of your question, Helen. Is there a part that I haven't done?
Helen: No, no thank you. I think it was a really important reminder for all of us about the referendum and the impact that has had on individuals and communities, emotional and social wellbeing, and to be mindful of that [when] people do come into contact with services.
I was going to go to Penny.
Now Penny, as you know and most people probably know, there is a support decision-making mechanism under the Act. And we actually use that model when working with consumers, which means we support people in any way they want us to so that they can make their own decisions about their treatment and recovery and then express those views and preferences, the decision's theirs. It's not substituting, it's not shared decision making.
So when thinking about themes in the report around the lack of access to information about treatment and rights and the need for stronger safeguards and accountability, could you talk about some of the key components of a rights based approach to mental health and how do they interact with compulsory treatment and some of the benefits of key safeguards that you've come across in your work and your research?
Penny: Thanks very much, Helen. Again, that's a long question.
I'd just like to begin by acknowledging the Traditional Owners of the unceded land on which we meet, but also the contribution of the lived expertise which has really been driving our efforts for change in Victoria. So I thank everybody who's participated.
I reading through the report, what you the impression you get, this overwhelming impression is the bewilderment really of people who find themselves in a system that is strange to them. They find themselves in a system where the rules that apply in other parts of the health system don't apply.
It's a different set of rules. It's rules where someone can impose compulsory treatment or as we've heard, the restricted practices or seclusion or all of those things. And it for many of those participants, it seems like a system where harm is mandated.
And so that is a very strange experience. It is something that creates fear and anxiety amongst people, as you can hear in the report. But it's also something that is the that is somehow when people ask questions or make comments, it's interpreted as a symptom of mental illness that is not taken as the expression of humanity.
And this is a, this kind of epistemic injustice that people experience in the mental health system is fundamental to some of the stories that we hear. The idea of rights based mental health law really, which started, you know, in the in the 80s, I suppose is that if, if and now this is a completely challenged idea, but if we must have some level of compulsory treatment, we can balance that if we pack it around with rights.
What our experience in Victoria has been is that even though we have those words in the legislation, they've often not meant anything very much. And indeed, one of the contributions of the royal commission was to show us that even though the 2014 Act looked good, the implementation was extremely poor and the processes that we had did not do the things that we had hoped that they would do.
And it is on that basis, so the the the evidence that we have in the report in front of us, it echoes with much of the evidence presented to the royal commission. It also echoes with research done in Victoria and in the United Kingdom about the the profoundly positive impact of giving people information about their rights and having rights embedded in the legislation in a way that can actually be accessed and made real.
We've already heard a description at the start of this meeting about the contribution that (Victoria) Legal Aid is making to an expanded IMHA and to the Mental Health Legal Rights Service. And so these are some of these are key safeguards that you put the person at the centre and that you give them the information and support that they need to make decisions for themselves.
Andthese are there are other safeguards, nominated persons, advance statements, second opinion service. But but they, they don't work unless we have the support across the system that that that giving people information about rights is an effective framework.
What the research shows us is that you is that is that it is something that improves people's wellbeing within the system. If we must have the system, this is a way of improving that. You still hear talk that if you give people information about rights, that that it might upset them or that it's troublesome or it's inconvenient or all of those things. But actually the research shows us that giving people information about what's happening to them, information about their changed legal status, information about what they can do about that, contacting them with IMHA with that support and peer support actually alleviates a huge element of the stress in that experience that they're having.
And so it is absolutely important that it's not just I'm carrying the work, but all the elements of the system respect the processes around rights that will help us put people at the centre of the of the system.
And because if they're important in and of themselves, but what they do is signal that the system respects the inherent dignity and humanity of each person, that's what they do. And that is a profound contribution that we hope will expand as we as we go through and the services expand to. So thanks. I hope that answers your question.
Helen : Yes, thank you.
And I think just a reflection from IMHA before I hand over to Wanda is that there is a lot more being done in services to actually provide rights information and to link people up with IMHA.
We really have seen that with the new Act, services are working closely with us and I think it goes to some of what's being talked about already in terms of building relationships and actually takes all of us partnering to actually reform the system to one which places people with lived and living experience like Simona at the centre and allows them to make those decisions and minimises the harm that people have experienced, are experiencing or have experienced in the system.
Thank you, Wanda, I'll hand over to you.
Wanda: Yeah, it's probably a nice segue into a final question to Simona. I know you shared some reflections as we were planning for today.
Can you please share a bit more about your experience as being of support of decision making and access to rights?
Simona: Thanks Wanda. Yeah, of course.
Well in all honesty it's been a really confusing journey.
Growing up, the only exposure to human rights I had was by watching occasionally crime shows where a person was arrested and then told their rights.
However, during my first hospitalisation I was not told about my rights in a mental health hospital.I was not listened to regarding my treatment and I felt tortured. In all honesty about 3 months long and I felt like a shell of a person, tired and brainwashed.
It was as if I was in a thriller on repeat with yo-yoing of seclusion, all sorts of restraint and what I now know to be coercion.
I was even threatened with electroconvulsive therapy and though my family and I objected, we were met with the sentence she is receiving compulsory treatment and we are the only ones with the saying or treatment.
And the weird fact is, is that at no point was I asked about my past trauma. This seems like it happens more regularly as I read this also within the report.
On a positive note though, I have experienced no seclusion during my last two hospitalisations, so I've noticed some things are definitely shifting. It's my hope that all human beings are made aware of their rights early on rather than by accident or not at all.
The first time I became aware of my rights was by seeing a poster from IMHA in a mental health hospital. It stated know your rights, call this number and so I did.
One conversation later with my psychiatrist and I experienced my first supported decision-making session and I really felt listened to regarding my wishes with medicines and I was discharged within a week on a voluntary basis.
It was such a contrast with my first hospitalisation. I felt empowered with I'm on my side and a new found knowledge of my rights. It'd be great if this was now always the norm. However, one hospitalisation later and I was met with coercion and substituted decision making. So it seems like it really depends on who you talk to.
The common thread I have here is that hospitalisations, a lot of times we're not really an environment for healing.
For me it was as if I was stuck in a weird computer game where I had to escape imprisonment, a quest to survive another trauma event.
The last thing I'd like to say on this topic is that in recent years I discovered the existence of the Universal Declaration of Human Rights as it was featured in a song.
This declaration was drafted over 70 years ago, as many of you probably know, and I'd like to highlight that in Article 5, it states no one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.
And of course, I fully understand that anyone professionally linked to compulsory treatment do not intend to cause harm to people. Quite the opposite.
It's important to remember and acknowledge that consistently throughout history, human beings have pointed out the compulsory treatment feels degrading, like punishment, is cruel and feels like torture.
It's long overdue to collectively hear them, and to not just hear them, but to act promptly with change, as this report clearly and repeatedly indicates the short- and long-term damage compulsory treatment causes. So let's build a society where people can heal rather than be traumatised. Let's build a society where human rights are respected.
Thanks for the question.
Helen: Sorry, Wanda, you're on mute. We have to have at least one of those experiences.
Wanda: Sorry.Yeah.
So that's the end of the questions that we had to direct to the panel. But some of the people attending today submitted some questions.
So we've got just a handful of two or three questions now to ask specific people that came from those submitted questions. And Simona, we are back to you again, one question we had was about the impact of compulsory treatment. Could you share a bit about this from your experience, please?
Simona: Yeah, it's, well, it's quite something to talk about it. Like let's start with what compulsory treatment feels like for me.
I've got a diary entry. It states when I'm in mental health distress I feel trauma in me boil and instead of helping me I'm captured. It feels like I'm a whistling kettle and I'm being duct taped shut, hoping it will silence the whistling symptoms of pain.
Instead of looking at why I'm in pain, I'm not supported to be gently taken off the fire. Compulsory treatment adds fuel to the fire by dragging me onto a gurney.
I feel like a stranded fish, claustrophobic, flapping about, hoping to taste freedom again.But then my arms and legs are tied. I feel like I'm being punished for having emotions. I feel like a horse you think you own, as without my consent, you stick a tranquilliser needle into my skin. I feel darkness overcoming me.
My eyelids wave goodbye as I hear a stranger's voice say sorry love.
I wish in all honesty that it felt like love and understanding was more implemented into society. As for example, it's not healing to be restrained by male security guards on the mental health hospital floor with such force that it bruises your physical and mental.
It's simply put traumatic for any human being, let alone for someone with a sexual violence history. Behaviours, communication, mental health issues, trauma symptoms and coping mechanisms from my experience seem to be labelled sedated and over medicated rather than listen to rather than people expressing themselves.
They're often suppressed by all forms of restraint, seclusion and coercion and this is also reflected within the report. The impact of compulsory treatment has been massive in my life. They're from psychological, physical, social and economical.
The report mentions the short- and long-term consequences as well for many others.
Some days weigh heavier than others. I still have flashbacks and nightmares.
As I mentioned before, I have even had medicine induced sleep paralysis, tremors, loss of facial expressions, extreme weight gain, increased anxiety and the list goes on.
I still mourn for the years that I've lost in my life, where I felt sedated daily and unable to concentrate, unable to further study and start a career in my 20s.
I have complex PTSD and I still in part distrust mental health services unfortunately, where people seem to be in a system where they have to push a sorry from their lips but will still restrain you and force medicines upon you.
I wish for a society where the power dynamic shifts and instead of people feeling overpowered that they feel empowered. A society that reduces stressors in people's lives. Society feels fragmented at times so it's like connect the dot. We really need to see the bigger picture and connect all that heals like a holistic system, like nature, art, exercise, music, talk therapy and peer support rather than hyperfocusing on one biomedical dot.
A true community. Because it's normal that humans feel emotions when trauma, job insecurity, loneliness, housing insecurity and so forth happens in life. What shouldn't be normal is compulsory treatment.
Lastly, I wish for a society where mental health services become the ones that need to be compliant with offering rights based, person centred, trauma informed and responsive services to people. There should be transparency and accountability for service delivery and consequences when human rights are violated.
Lived experience leadership needs to be embedded in all levels of society and in a genuine way so it's not tokenistic. Lived experience experts such as the ones in this report have spoken up.
It's time to start to actively listen right now to their collective knowledge as this report concludes that finally being listened to and believed are stepping stones to true healing. Thank you.
Wanda: Thanks, Simona.
I can't imagine there's a soul listening today that doesn't feel feel what you've been through, through what you've just expressed. Thank you for for sharing that today.
Helen: I'm going to ask one more question. But I also want to acknowledge Simone. Yeah, what you've shared. And I can't imagine how difficulties for you to have done that. And it's, yeah, and thank you very much.
I think everyone will appreciate what you've shared and the hopes as well that you have for the system, which I think everybody on the panel agrees should be the way that the system actually moves.
Mary, you've got the last question we had from the from people we received a question about the intersection of mental health and complex trauma and how well or not the impact of these is being addressed through compulsory mental health treatment.
It is obviously a theme that ran through the report as well. Do you have any reflections you could share on this?
Mary: Yeah, I mean, it, it seems awful to me that the coercive powers of the state are used most on the people who have been most traumatised by what's going on in life.
I mean, if you think about prisons, child and child protection and in particular, and I just think and some we have some very inadequate ways of dealing with people who are living with the fallout of whatever that is of trauma and, and their lives.
And, and certainly I think, you know, compulsory treatment is just serves quite often as a reenactment of past traumas for people. And so I'd, you know, I don't think, you know, the trouble is we have a system that is really geared and kind of arranged to mop up short-term risk. And there are a lot of casualties that occurring that when, when a system is geared that way.
And if we were had a system that was able to take a longer view of a person's life to see the social determinants and to work towards long term better health and life outcomes, we wouldn't have the same casualties. Thank you.
Wanda: I know in wrapping up the panel part of today, I want to go to each of the panellists and ask if there is just one thing in a closing reflection that you think you'd like to say about one thing you think would make the biggest difference in radically reducing compulsory treatment.
And with that, I add in the hope to move towards elimination.
What's the one thing you would think would make the, the biggest difference? Somebody.
Sorry, I'll start with Jackie. Would you like to answer that one?
Jackie: I think acknowledging and the trust that Simona has just outlined, I think she talked a lot about, about transparency in relation to the way we, we treat people and that data.
And I think data transparency is something that we could all hopefully see would help to understand where places are doing it well and therefore, we can adopt the same ways and see the reduction happening. I think embracing a strengths-based approach to recovery and to allow time.
I think once we are 30 per cent of the way through our transformation, so many of the new services are just being established or getting there. So I really hope that once we have these more alternatives to ED departments, better in the middle before it becomes a crisis, better peer work, better engagement with lived experience and really understanding rights-based approaches that we would see a reduction.
So I have hope in these things and, but I think the employment and continuing support of IMHA and the work that they do, particularly their First Nations advocates, is really important to be seeing a reduction with Aboriginal and Torres Strait Islander Victorians in the public mental health system.
I think the understanding and embracing of the principles in relation to engaging with family, carers, supporters and kin and including them in the plans will help to try and avoid some of those crises. But acknowledge the work that they do and and the unpaid work that they do and the support they need.
I think all of those will really help to drive a reduction in compulsory treatment. But that's not to say that this these things have caused trauma to people in the past and it takes a while and it takes a long time to offer us to acknowledge and to move and help people recover.
Wanda: Thanks, Jackie.
Sophie, I'll pass to you next.
Sophie: I'm just going to say something quite similar really. You know, just thinking back to the risk aversion, I think we need to do things to change culture.
And that's not just at this level, but it's at a community, it's at a legal, coronial, WorkSafe level to understand that people's long-term interests require us to have the dignity of risk and autonomy and to set the bar in a different place.
I do think there's value in a bar and and I know there would be many people here who would disagree with me, but I think the bars in the wrong place. And we do need to think about, you know, the best interests of people long term. And we really need to factor in, you know, the trauma that is caused by these experiences. And, you know, Simona described so articulately.
And I personally believe that we need a governance approach that's about quality and safety and enhancing a strength space kind of approach, just like we would do with any human being.
That we need to look at our culture and our mental health system, but also our community and think about how we enhance people to see better ways to do things and shift that bar rather than a sort of control and command approach to changing it.
And we just need to work really hard on, on tolerance in the community and educating and helping families. And all of this takes time.
And it takes a system that is well resourced and well-funded to allow people to have that time to do proper discussions, exploration and communication. And I do think bewilderment is a really good word for the way the report reads.
And you just think if someone just sat down and explained a little bit better or, or felt strong enough to have those hard conversations, because there are hard conversations as, as someone who's used the Mental Health Act, it's a really hard conversation.
It's a very uncomfortable place to take away someone's rights. And I think sometimes we avoid doing it because we don't have the space, the time, the energy, the bravery. It's not culturally sanctioned that this is an important thing that we should be doing. So it is about culture change, but it's about culture change and, and risk aversion.
Andus thinking about humans and how they get to these points rather than thinking about the symptoms that they might have at this current instant.
Wanda: Thanks, Sophie.
And I often ask the question when we're here about risk aversion, what are the risks of being too risk averse? And to think about positive risk taking?And, you know, think about, you know, there are lots of positive things that can come about if you take that that chance and and do some positive risk taking. Sorry, my little rant in there.
Penny, I'll move to you.
Penny: Thank you.
And I am … look, this is partly facetious. We can stop. We can just stop. I'm thinking of the story in the report of the nurse who gets under the table. She says don't call code grey, I'll get under the table. We can just stop.
We can't stop 100 per cent, but a lot of the time we can just not do it.
I appreciate what, you know, I'm being slightly facetious in that black and white comment because there's a lot of things packing around that. But to respect the stories that are in that report, the answer is we stop.
[On-screen: Wanda nodding]
Wanda: Oh, sorry. Nice message, Penny. Mary.
Mary: Yeah, I'd like to acknowledge another report that came out recently, which was the Abolitionist Perspectives report, which could be seen as a bit of a companion to this one.
And I mean, at one stage I just said, well, let's let's get rid of the Mental Health Act.
I kind of think in this report also pointed out that it's not that easy because we've got other coersive parts of the state which will just fall into the breach if we don't have the Mental Health Act, which may actually end up being worse perhaps.
[On-screen: Wanda holds up the book, ‘Abolitionist Perspectives’, to her camera.]
Mary: So it's a very difficult, we're in a very difficult position. But I do think I like the word stop, Penny. I think it's a that's a good one. Even if we can't stop at all, I think we should stop it as much as we possibly can. Thank you.
Wanda: Thanks, Mary. Yes, you beat me to it, the report is worth reading for sure.
And I think for the panel part will start, will end where we started with Simona.
Do you have a last, some last pools of wisdom?
Simona: Yeah.What a powerful word that's been mentioned with a stop.
I think it's also like it will importantly reduce people's experience of being traumatised from receiving compulsory treatment, and I think it will hopefully open up a faster pathway for people to actually receive support that heals.
I believe it'd be a way to respect people's dignity, self-determination and human rights. .
Wanda: Thank you.
All right, we're coming towards the end, but just before I get a chance to make a few closing remarks, I want to give a huge thank you to all of you today for the your time, the work you've put in today, your dedication and the commitment you've demonstrated today to listening to the voices of people who've lived and living experience.
And I also want to thank Matilda and Simona for sharing lived experiences today. And we've got Simone at the end with her poem.
I'd also like to thank all of you here online today for attending from right across the state.
And thanks to Kate and Charis and others who did a huge amount of work tirelessly behind the scenes to make today happen, I now actually have the privilege of having a few reflections of my own that I can make.
And I want to also pose just a couple of questions for people to take away and think about.But I recognise this is an intensely difficult topic, you know, with lots of views that can be very contentious. However, the key things are incredibly powerful and strong.
The stories in the report told very clearly how the system added to the harms and trauma that people face, rather than other compassionate and healing systems. So for me, the message in this very complex situation is quite simple. We can't support something that does this to people. I think it's particularly important to consider how we can support people to access the supports and services they want and need, when they want and need them.
I'm interested to consider how we move beyond a medical model of mental health to accepting other ways of knowing and being, and to move towards approaches that are consumer led and address power imbalances and coercion. We can't even start to work through this without recognising and and naming the inherent tension in legislation and compulsory treatment that removes choice and control.
So I'd like each of you to reflect from whatever role that you're or capacity you're here today, You think about what it is that you've heard and the stories that you'll take back with you. And I want to ask each of you the same thing that I asked the panellists, what is the one thing that you could do that would make the biggest difference in radically reducing with our view to eliminating compulsory treatment in Victoria?
And how soon can we do this? For me, it can't be too soon. And as a dear friend and colleague often used to say, one I haven't seen for a long time, but he used to always say it's not good enough for you and your family, it's not good enough for us.
So with that, thank you again for joining us today. Please visit the VLA website. You can access the report and some of the videos from today, which will also circulate via email. And we look forward to these conversations continuing.
It's now my honour and pleasure and we will be finishing a little bit early because of because of the time there. But it's my honour and pleasure to end today's session with Simone sharing a poem that she has written.
She was one of the project participants, one of the lived experience experts, and she wrote this well, she was on an adult inpatient unit.
The poems titled ‘Wake me up when my sentence is finished’. And I just got a chill just saying the name of the title of that that poem.
So with all that, thank you everyone. And we'll pass to the tech people to play Simone's poem for you.
[Pre-recorded video starts]
[On-screen: a colourful illustration of an abstract face. Text of the poem appears as it is spoken by Simone.]
Simone: Wake me up when my sentence is finished,
When my confidence and dreams have all but diminished.
You will suffocate me with your power and control,
Nothing is sacred, mine is a head that will roll.
[On-screen: the abstract face’s eye shuts.]
Simone: The walls are graffitied with tears of pain,
With screams of anguish and fear that can’t be explained.
[On-screen: a tear rolls down the abstract face.]
Simone: Silence is a virtue that is rarely heard,
Your voice, thoughts and behaviours classed as absurd.
[On-screen: pills of different colours and shapes fall down.]
Given multicoloured pills of difference descriptions for our abusive label –
Can’t smile, laugh, cry, complain or advocate –
You have to remain in a coma that is stable.
[On-screen: a tear rolls down the abstract face.]
Simone: You try to disempower me, my intelligence, strength, rationales and wisdom,
Trying to squash my voice, personality and my spiritual kingdom.
Who are you accountable to, you doctors full of textbook crimes –
Not trauma informed, person centred, heartfelt or compassionate ear of kindness chimes –
You haven’t won because my heart and soul still rhymes.
[On-screen: a speech bubble appears.]
Simone: I still have a choice to use my voice!
Truth and good will prevail,
It is amazing what you can do in psychiatric jail.
I am number one and watch out for here I come!
[Pre-recorded video ends]
[On-screen text: Being believed, being heard. Stories of compulsory mental health treatment in Victoria. Report launch – November 2024.]
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