Speakers: Margaret Kelly, Stephen Ade, Carrie Lumby and Stephen Scott

Stephen Scott (host):

Good afternoon, everyone and welcome to this webinar for the zero suicides in care initiative, and particularly the co-design aspects of the initiative. My name is Stephen Scott. I'm a principal policy officer at the mental health branch and I'm working on the Towards Zero Suicides initiatives.

I just like to start by acknowledging the Traditional Owners of the land that we're meeting on here in Sydney today the Gadigal people of the Eora nation and pay my respects to Elder's past and present. I also acknowledge people with lived experience of suicide and people with lived experience of mental health conditions and particularly, on your contribution to suicide prevention. And thank you for your participation in this webinar today.

As I said, the initiative that we're focusing on today is the zero suicides and care initiative, but of course, it would be remiss of me not to make mention of the fact that we do In the midst of the COVID-19 outbreak, and while there is of course a lot of disruption being caused by the outbreak, we are very conscious that we should maintain our focus on suicide prevention despite all of those disruptions given that both pandemics and the social and economic consequences of them have been associated with increases in suicide.

We are conscious, of course of the social distancing advice that is being provided at the moment. Many of us of course are preferring to use language like physical distancing, instead of social distancing. But we of course, acknowledge that there's some circumstances where that might not be possible, such as transport, being on the street and of course in this webinar itself today, so we just ask that you also note that we are nonetheless in a freshly disinfected studio here at Redback conferencing, with plenty of hand sanitizer and of course, we are all observing the extra precautions regarding frequent hand washing, not touching our faces and reducing eye contact with groups of people wherever possible. So I encourage everyone to stay well and healthy and of course, socially connected during this challenging time.

Now, just moving on to the initiative that we're discussing today, so integral to designing quality services for mental health and suicide prevention is input from people with lived experience of suicide. And as the zero suicides in care initiative is implemented across the state, the selection of people with lived experience who may wish to be involved will become increasingly important. This webinar aims to support local health districts with the planning and design of their implementation of zero suicides in care. And the presenters today will discuss physical principles of co-design and the importance of ensuring that those who are joining the planning, confident to make the contribution to the discussion.

We're very pleased to have examples of good practice, and also challenging times that have been experienced by people with lived experience being presented today as well. And in addition to that the discussion will share insights from one local health district and their participation in co-design with people with experiences suicidal behaviour, and we'll look at what worked well and what was challenging for those facilitators. There will be the opportunity to have questions responded to at the end of the webinar as well.

And so I encourage you to use the blue hand icon on the top right hand corner of your screen to submit questions. We will have three presentations in total of about 10 minutes and then a period of about 20 minutes of questions and answers. So please submit your questions. We're really very keen and interested to respond to them. I'll firstly introduce our speakers as well.
The first presentation will be from Margaret Kelly. Margaret has over 35 years’ experience as a health professional in the UK and Australia. In addition to many years of clinical nursing practice in paediatric intensive care settings, she has held senior roles in facilitation of workplace culture change, practice development, research and managing paediatric healthcare. Margaret has completed a PhD exploring the nature of skilled facilitation and development of facilitators. And she's currently managing the patient experience and consumer engagement team portfolio at the agency for clinical innovation which is a pillar of New South Wales health in addition to providing implementation support for clinical practice change to the New South Wales health system.
Our second presenter is Stephen Ade. Stephen has over four years’ experience as a peer worker in the public health sector and community manage sector, and he's currently implementing a ministry of health initiative called peer stock the supported transfer of Care Initiative at the Prince of Wales hospital, which is designed to reduce readmission rates among consumers transitioning from hospital to the community. He's also a peer educator for the South-eastern Sydney Local Health District as well as the recovery college that's hosting there. A mental health consultant with private organisations and an advocate and public speaker for people with psychosocial disabilities with the National Disability Services, and the NDIS quality and safeguards commission.
Our third presenter is Carrie Lumpy. Carrie is a mental health consumer advocate with a lived experience of suicide involved in the co-design of safe spaces for people in suicidal distress at a regional, state and national level. She is a lived experience member of the Illawarra Shoalhaven suicide prevention collaborative and the Illawarra Shoalhaven local health districts towards their suicide steering group. Carrie is currently advising Roses in the Ocean, the National Organisation for lived experience of suicide. that's part of the of the Commonwealth Department of Health's National Suicide Prevention leadership and support program on how to support the development of an individually tailored workforce for the spaces. So we welcome out three presenters and really express our appreciation for everything that they will contribute over the next hour or so.

So I'm just going to give you firstly a brief kind of policy context for the initiative that we'll be discussing today. Many of you will be aware that the New South Wales premier has identified suicide prevention as a premiers priority which has a target attached to it of a 20% reduction in the suicide rate by 2023. The basis of the premiers priority is the strategic framework for suicide prevention in New South Wales 2018 to 2023, which was launched in late 2018.

And derived from the framework is a set of 15 initiatives that are designed to make an unprecedented impact on the suicide rate in New South Wales. And that's supported by a new investment of $87 million over the next three years, which is being used to fund a whole range of government and non government organisations to produce new work on suicide prevention. So it's a very exciting time in suicide prevention in New South Wales.

Now, just to give you a little more detail on those 15 initiatives, there is four of them that have been delivered through our New South Wales health mental health services. They include zero suicides in care and also the alternatives to emergency department's initiative, the assertive suicide prevention outreach teams, and an enhancement to rural counselling in our rural and remote local health districts. There's also a couple of initiatives that we are working on through the broader New South Wales government agency system.

And the first of those is a training initiative for people working outside of the mental health and health systems to develop a consistent training approach to suicide prevention across the whole of the government agency system. And secondly, the development of the New South Wales suicide register, which is part of an effort to improve our management of suicide data in New South Wales. There's also three significant initiatives that have been delivered through the non government sector.
The first of those is an expansion of beyond blues the way back aftercare service for people who have made a suicide attempt, a trial of a youth specific version of aftercare, which will be located in two sides, in New South Wales and also an initiative for people who have been impacted by suicide. So bereaved families and communities but also first responders and people in the general public who may have witnessed a suicide or been otherwise impacted via suicide. There's also a large range of community level initiatives that we are implementing as well.

And the first of those is further supporting and expanding number of local community suicide prevention collaboratives around the state, trialling what we're referring to as a local suicide alert system which will be an information sharing and response protocol for people who are at imminent risk of suicide or who have been affected by suicide. There is an initiative that is delivering through the Aboriginal community controlled Health Organisation's sector, a set of activities that are culturally relevant suicide prevention for Aboriginal communities.

There is an expansion of peer led programs and these are an important new component of suicide prevention that has a lot of very interesting emerging evidence around it that places people with lived experience of suicide in a central role in running and delivering programs that support people who are living with suicide ideation, experiencing suicidal crisis or recovering from a suicide attempt. There is a range of gatekeeper training. This is sometimes also referred to as community suicide prevention skills training that's being delivered through a range of industry groups, non government organisations and communities.
And lastly, what we call community response packages for priority groups. Of course, there's a wide range of priority groups that are at heightened risk of suicide and this initiative will be providing some additional support to those groups to respond in ways that are appropriate for those communities and different priority groups.

Now, just moving on to a brief summary of zero suicides and care initiative for those that are not familiar with it. This initiative is implementing a New South Wales version of the zero suicides health care approach which has been demonstrated around the world and In Australia now particularly on the Gold Coast to achieve reductions in suicide amongst people who are in contact with the mental health system, and even achieve sustained eradication of suicide in those settings. So it's a very important part of our response to suicide. The focus is both mental health, inpatient and community settings. So that's very important that it's not limited to the mental health inpatient setting, given that much of our mental health care is delivered in the community now. And fundamentally, it involves a cultural change process that starts within a very important attitudinal shift, that no longer see suicide is inevitable.

There's a whole range of other components related to clinical training and suicide care pathways and importantly, it provides a learning environment that responds supportively to risks and critical incidence and which is embedded in improved engagement with people with lived experience including bereaved families. Fundamental to the whole zero suicides health care approach is adjust and restorative service culture which is led by executives and managers.

This is also being supported by the expansion of the assertive suicide prevention outreach teams that I mentioned earlier. And today we have held a workshop to kick off the implementation of the initiative in October last year. There is some draft guidance material now circulating to the districts that are implementing zero suicides in care and we have a range of local co design workshops that will be forthcoming as well. All of the districts are being supported in their implementation with some additional staffing for the initiative.

So moving on now to Margaret Kelly's presentation. As I said earlier, Margaret is from the agency for clinical innovation. And we thank her for her presentation on using co-design for improvements. So thank you, Margaret.

Margaret Kelly:
Thank you, Stephen. And good afternoon, everyone. So I think I've gone backwards instead of forward, sorry. That's more helpful isn't it? Thank you. The right side, sorry, being left handed, I'm using often on the left instead of the button on the right. OK, now resorted. So over the course of the next 30 minutes or so, I and my colleagues are going to share with you some of the elements of co-design and insights in co-designing and practice and I'm going to start us off by just talking about some of the principles capabilities and process of co-design that is contained within guide that was published by the agency for clinical innovation last year. And from here all in on and I'll refer to that as ACI. And I'll be referring to you to the guide throughout the presentation.
So the development of the guide was led by the ACI Mental Health Network and the patient experience consumer engagement team or PECE. And the Mental Health Network is very much, have the attitude of working with staff and consumers across New South Wales health as well as the New South Wales ministry for health and other pillar agencies to develop and implement programs, frameworks and models of care. So the New South Wales seclusion and restraint review was triggered in 2017, following footage of the events contributing to the death of Miss Marie Merton being released by the New South Wales coroner.
And in response to that review, ACI was tasked with developing a guide to build code sign capability. And that was a collaboration between people with lived experience the ACI Mental Health Network and the PECE team. You can access the guide on the ACI website by using the QR code on the slide here through the camera on your phone, or by using the link on the slide or simply going to the Mental Health Network page on the ACI website.

This quote from participants, who were involved in helping to develop the guide, just highlight some of the basic elements, I guess, or the key elements of co-design things like challenging the status quo, addressing power imbalances, and really making sure that people with lived experience, the voice of people with lived experience is a co-driver of change. And these are some of the elements that we'll be exploring further throughout the course of this presentation.

So what is co-design? Well, you can see the definition on the slide. It is a process that brings people with lived experience together with health care professionals, that's clinicians, managers, and executives in an equal partnership. And the purpose is to solve problems or redesigned services. Experience-Based co-design then is a specific methodology that has a particular focus on understanding and improving the patient journey as people redesign services.

And on the right side of the slide here, you can see a ladder of consumer engagement, and you might think, as you look at that letter about situations you've seen in your own practice or your own context of where people might have engaged with the population that they deliver services to. And often people think that they are co-designing when, in fact, they're somewhere else on this ladder and possibly at a lower level of collaboration or consultation. So you can see that co-design is quite near the top of the ladder, which makes it identifies it as a higher level of engagement. And it really is about partnership and about consumers co-leading service improvement along with healthcare staff. So not all consumer engagement is co-design.

For example, having people with lived experience on a committee or asking them to review documents, or for example, asking them to provide feedback on a service is a good level of engagement, and it's great that people are doing it. But it would probably come lower on that ladder that you saw on the previous slide, and would generally not be considered co-design. Because as I said earlier, co-design is about creating an environment where people can really share power and make decisions together in partnership. And it also generally requires that people with lived experience are involved in the project from the very beginning. and certainly involved in determining the project aims and scope in order to be successful.

You can see here the principles of co-design that are outlined in the guide, and there are five of them. So I've referred already to the equal partnership and consumers, families, and staff being able to work together with an equal voice from the very beginning and having, having shared ownership and control of the process, they also need to be open to working together towards a shared goal and trusting the process that it is authentic and it will work and learning together throughout the process. It's very important that the views and experiences and diversity of consumers, families and staff are respected, that is that they are acknowledged and valued. Everyone involved in the co-design process needs to practise empathy, and they really need to create that safe environment where people can feel confident to contribute to the process.

And finally then it's very important as part of the process that consumers staff and families work together to design, implement and evaluate activities, services, or frameworks, whatever it is that they need to improve. So what then is the process of co-design that's outlined in the guide? Well, you can see that there's generally a staged approach taken to co-design and along the bottom we've outlined the stages there being four of them. So, and it really uses participatory and narrative methods to gather and understand experiences of receiving and delivering services.

So in stage one, the team that you put together may include people with lived experience, of course, but also co-design lead or leads. And that will often be a staff member and a consumer working together, also may include other staff, both clinical and nonclinical and executives. It's important that executives may not be actually members of the project team, but it's important to engage them as sponsors so that the work in progress, and that it's done authentically.

Stages two and three then are about gathering. And to understand the experiences from the perspective of people with lived experience, but also from the perspective of staff who are delivering the service. And this is followed then by the final stage of co-designing improvements collaboratively. Testing those site, learning from them and implementing and evaluating them. And then the guide, you will find a much more depth on all of these principles, the principles, the process and the capabilities involved in co-design.
So moving on then to have a look at the capabilities we mapped these capabilities that we consider are needed in co-design against the New South Wales health core values of collaboration, openness, respect, and empowerment. And they aligned very well. And you can see here that there are capabilities that relate to the process of co-design.

For example, creating an enacting, a shared vision and knowledge of co-design. And then there are other capabilities that are perhaps more about the relational aspects and that's things like valuing diversity and individuality, challenging assumptions, balancing power, and communication. It's important as well that everyone in the team maintains a sense of curiosity to really listen to the views of everyone around the table. And design solutions, then that potentially could be tested out. Again within the guide that you'll find on the website within each core value. The capabilities are identified the individual behaviours that people need to display and meeting the capabilities. And also what good practice looks like. And we're going to hear more in a moment about what good practice looks like from the other presenters.

The service enablers that are needed in order to have successful co-design thinks that the organisation needs to advocate and make sure are in place. Strong leadership and courage is needed on the part of everyone in the team to challenge assumptions and balance power that were just two of the capabilities that I mentioned in the previous slide. Being brave and courageous, it's believing that anything is possible, and understanding that any challenge can be overcome with creativity and collaboration. This involves a shift in the usual way that we do things often. The infrastructure support that's needed includes recruitment and training for everyone that's in the team.

And particularly people with lived experience so that they can be well supported throughout the process. It also covers governance of the project and really making sure that there are mechanisms by which people can participate fully and be able to co-design with the rest of the team. And evaluation of course, is very important to make sure that feedback and assessment of the initiative is an ongoing and continuous process.

There are a number of questions that people need to be asking themselves both before engaging in co-design, but also throughout the process. And again, the guide goes into much more detail around the roles involved, the support that those roles need to offer as well as challenges that people might face and how they might overcome those challenges.

Again, on the ACI website, you will find some tools to help you in gathering and understanding experiences, as well as framing problems and designing solutions. Each of the templates that are listed here include an explanation of how to use the tool, which stage of the co-design process that might be useful and a completed example. And finally just listed here some resources that you might find useful in terms of helping you to do co-design and just pointing out that the first publication in the first stop point also includes information about projects that have been undertaken by the ACI. I'd like now to hand back to Stephen.

Stephen Scott:
Thank you very much for that Margaret. I'll now introduce Stephen Adei from Eastern Suburbs Mental Health at the Southeast Sydney local district.

Stephen Adei:
Thank you. Welcome everybody who has tuned in. Thank you for joining us.

And what I'm going to talk about, Margaret has sort of talked about the technical stuff about how you do it. I've looked at the guide and it's really informative. It tells you the steps, what to do, exactly how to go about it, but it's kind of dry. And I'm here to kind of talk about what it's like on the ground, what you have to think about. ’Cause I've been in co-design, it's something good. Some has been, let's just say not so good. And the things that you have to kind of keep in mind. So I broke it down into five major groups.

The first part is off the key principles and concepts would be neutrality and respects, trauma informed practice, which is what people talk about a lot. And it's all over the internet, you can research it, but sometimes it's not really put into practice all that much, but we'll go into that. Reducing power balances and tokenism, appropriate recovery focus language, the ability to work with people at any stage of recovery. And in between, I might use little examples here and there, practical examples of things that I've seen, been through. Hopefully, is in purposeful sort of storytelling to reduce trauma and that kind of things. But sometimes you got to get the point across, OK, let's dive right in.

Alright in the previous slide, one of the key words was with not for, and that's one of the key ideas about co-design. It's about mutuality, which is basically working together so that both the researchers who usually in the LHD tend to be clinicians and the individuals with lived experience have something to offer. And it's something that both sides have to recognise because the fact is no matter how great a clinician, you might be, the fact that you haven't been through something, there's that element that is in there. And that's why peers and the peer workforce is important to mental health.

The second big thing is that people are more than the sum of their diagnosis. It's a thing that I've noticed sometimes in LHDs, that people come in, they're a number, or their diagnosis, they have this, they have that. They are this they just... They present frequently. They use terminology like frequent flyers when somebody is just coming in because they like attention. They like help. So the main point of that is not to be condescending or create bias based on the fact that the person may have mental distress or a diagnosis.

And again, I'm saying this from the perspective of people who work as patients, I sort of presume most of the people tuning in are clinicians. The second theme is respect, treating the person just as any other, the fact is mental distress. And in this case, we're talking about the zero suicide in care. So even though it's specifically about people who have lived experience of suicide, it applies to all mental distress. It happens to one in four people. It could be you, it was me 20 years ago, could be a brother, could be a sister. All these people have lives, you don't lose your intelligence. You don't lose your capacity to think just because you're going through a mental distress. If you've got a physical injury, if you sprain your ankle, you're still the same person. You just have something you gotta deal with. And mental distress is basically the same.

Now here I'd like to give a shout out to one of my colleagues a peer worker at a district level. Matt's shout-out if you're watching, hope you are. (LAUGHS). And he's known for his brutal colloquialisms and one of the principles that he likes to work with when he's dealing with clinicians, especially is the, 'Don't be dick' principal, excuse my French. But it's pretty self explanatory. Treat people as you would like to be treated. It's the whole thing by being condescending, respect, treating them as a family member, your sister, your brother would like to be treated and just being polite, building rapport, spend a little time, talking about the other issues.

Because when... I deal with a lot of people and PAC, which is the emergency ward, and a lot of them come through with lived experience of suicide or have made an attempt to take their lives. And you have to understand that usually there's an underlying reason behind it. There are people, things go wrong. It could be a crisis, no matter what it is, try to understand where they're coming from before treating the actual problem.

Alright, trauma informed practice. We all quote it, we all say it, but do we do it? First of all, the technical definition, as strengths based framework, grounded in understanding and responsiveness of the impact of trauma that emphasises physical, psychological, and emotional safety for everyone. And that creates opportunities for survivors to rebuild a sense of control and empowerment. Statistics actually say that 80% to 90% of mental distress is based around trauma in the past, a crisis, something that causes the brain to essentially take a break, whatever it may be. So when dealing with people, who've been through trauma, and it's usually a large component in dealing with people with lived experience with suicide. You've got to think about key principles and concepts.

The first is safety, both yours and theirs. So I guess that has to deal with the places that you might meet, choose to meet, making it comfortable for both parties. Just looking at risk assessment and those sort of things, if necessary. Looking at choice - being able to give a chance to talk about what they, what they want to deal with, when they want to deal with it and to what extent they want to deal with it. Collaboration and mutuality - this comes up again. We talked about mutuality before, but it's about collaboration - working together.

Again, the working with, not for, not talking down to. Transparency and trustworthiness - people can basically spot the bull miles away. And empowerment - when it comes to what would people in co-facilitation and co-design. It's about giving them the chance to express themselves, feeling that what they say is being made note of, being recognised, and being used, first of all. OK.
In terms of power imbalances and tokenism. There's always gonna be a level of power imbalance when you come to work in as a clinician with someone with lived experience. Even I, as a peer worker, have that to a certain extent because, for example, I have passes to get in and out of every area of the hospital and they don't. Some, when I'm dealing with consumers or people on the wards.

So, the key is minimising it, which again is part of being good in rapport, letting them know that you're there to just speak about the experiences, that they have something to share, they have something to give, and not kind of taken the I am the expert in this field because when it comes down to it, it's supposed to be a consumer-led experience in terms of treatment these days, recovery-focused, all those kinds of keywords.

And the fact is that they should, they have the lived experience, therefore, are 50% of the information that you're trying to get across. I've already said that the patients don't even realise you have the pass to facilities, you come and go, you're paid by the hospital, so, you kinda get that out the way upfront, but you focus on the commonalities - the lived experience, what you've been through, the fact that I've had in my past, thoughts about suicide.

I never actually acted on them, but I basically didn't eat for about three months. I'm over 100kg. Go to the gym. And I dropped to 55kg. That was drastic and that was pretty much, not much I could do about it apart from (UNKNOWN), come out of it slowly. Again, I repeat, no making decisions for but with. Coming back to the human values of respect and what they have to offer and tokenism. Sometimes people even, even at work, they wanna be a worker for a project just to have their name on it, just to tick the box. It's OK. But, that's not what it's about. You've got to seriously think about how you're gonna work them in, what they're gonna offer.

For example, one of the best projects that I did, not with suicide per se, but was with being in Fair Trading about NDIS scams, getting services, that sort of thing. But we were given training and we delivered the training to consumers and people with mental health issues. And lastly, not being dismissive of the input of the consumers with their lived experience. OK, language around suicide.

The absence of suicide language and conversations and major contributor to the stigma that people face in the community. I mean, mental distress, even the fact that it's called mental health challenges already puts stigma around it. Not being able to talk about it clearly is an issue and I put bereaved because it affects more, if somebody that's passed away, it's not just them that's affected. It's the people around. It's the community. So, we need to look at ways of dealing with it. Suicide is not a crime. There're religious overtures sometimes to people having suicidal thoughts but it's actually just something people go through. So, what it actually needs is compassion rather than judgement or condemnation.

Other things you hear sometimes, when people come in frequently, are that they're attention-seeking when in fact, they're just looking for attention or comfort when distressed. And the fact that they've actually come in for help is a positive thing because they know that they need the help. On the next slide, I'll just go through a couple of examples of appropriate and inappropriate language. Appropriate, at least, this is by the MACC that I took some of these quotes from - died by suicide, took his or her life, ended his or her life, and non-fatal attempted suicide, or an attempt to end his or her own life. Worn-out words that we don't use because of the connotations, the way people use them are - committed suicide, successful suicide - as you can imagine, that's not what you want to use. Completed suicide, failed attempt at suicide, or an unsuccessful suicide.

And even I myself, I use the word suicide ideation mainly because I work in a hospital setting. It's never been a huge issue with consumers before but was brought to my attention that it's quite clinical language. If I could use something like thoughts about suicide or have you had suicidal thoughts, that might be a better way of approaching it. It was something I had not thought about too recently but it just shows that you can always live and learn. It's constantly evolving. Lastly, so I'm just flicking through this check.

The last slide is just about when you're able to work with people. There's the kind of, sometimes, there's an impression that 'cause you just have to be many years removed from a period of self-harm or suicidal ideation, that they'll be safe at that point. How [unknown] said before, it could be [inaudible] come from people who've recently experienced because they're close to the experience, they're able to give better insight. For example, my experience is 10 to 12 years ago. It's not as recent, not as fresh - I probably would prefer to give a spot, say, on a forum or coaches with somebody with more recent experience because of that, even though I know what it's like.

The decision as to which consumers to use for inputs and co-design, should be, sorry, excuse me. I'd just have some water now. Should be based more on their desire to contribute as well as their level of lived experience. So, anything from sort of three months to five years removed from emotional distress would, should actually be fine and in fact, should be encouraged because in all kinds of mental distress, you have good days, you have bad days, but it's just being able to show up and being able to contribute and, yeah, work. At this point, I'll pass it back to Stephen. And we'll move on.

Stephen Scott:
Thank you so much for that, Stephen. That was really excellent. I'll now introduce Carrie Lumby from the Illawarra Shoalhaven Suicide Prevention Collaborative. Thank you, Carrie.

Carrie Lumby:
And welcome everyone and it was fantastic to hear Stephen really animate what are sometimes quite dry, abstract principles and to bring them to life. I'm just wanting to speak, I guess, quite briefly now about some of the things that LHDs need to consider in order to achieve really active and meaningful lived experience participation in local co-design initiatives.

And, I guess the first thing to consider is what do we mean by lived experience of suicide in the context of the zero suicide initiatives? I think it's often considered to be self-evident in that's lived experience of suicide is a kind of considered a homogeneous group but as we know, as we've talked about, there's a very rich and diverse range of experiences and perspectives that come under that umbrella.

And so, it's really important to capture those but also to consider the fact that there needs to always be relevant lived experience involved and so the focus of that needs to be sharpened according to which initiative is being co-designed and in the context of zero suicide in care, I think it's very important to include people who have had a significant exposure to EDs and hospitals for suicidality or with suicidality. It's also very important to make visible those invisible people. So, people who don't traditionally access services and also for people who's distress is created or compounded by systemic oppression and discrimination. And that's very important.

The way in which someone's lived experience intersects with other social and cultural factors, and the way then that that compounds patterns of oppression and discrimination. It's, it's critically important that we look at those more nuanced aspects of people's identities and experiences and engage those people.

There are resources and tools for that that have already been developed and I think particularly, for LHDs, it's really important in accelerated processes to look at existing lived experience networks. If there aren't any on the ground, to look at ones at the state and national level. There are also things like lived experience participation, participation matrix that can be easily developed. There are already ones out there so you can map to ensure that you have a very rich and diverse range of lived experience in the room in co-design.

So, the other thing to consider that I think is often considered kind of a self-evident concept is, that's been mentioned, is power sharing in the context of co-design process. I think now it's commonly acknowledged the need for power sharing between the clinicians and consumers, but it's often not considered in relation to the lived experience cohorts. So, within those lived experience cohorts.

Now, in the case of zero suicide in care, I think a really good example is to think of people like me who have been exposed to involuntary treatment, specifically in an in-patient facility, being there for suicidality, for a suicide attempt, and then being scheduled, for example. You'll have people like that in a room and some of those people will actually currently be on, for example, a community treatment order.

So, they're still being exposed to involuntary treatment in some form and then you'll also have people who haven't traditionally accessed services, who have maybe actively avoided those services and then you'll also have people with bereavement who may have had no contact with the mental health system or even mental health issues themselves.

So, it's very important to think about what does power sharing mean in that context? So, what are the essential elements of a co-design process for people with lived experience and what are some of the things that LHDs need to be aware of? And these are non-exhaustive list of non-negotiables, but there's certainly things that are common, there's things that I've experienced in co-design and there are the things that people talk to me about with lived experience, and their experience. It's also very common across the literature, these essential elements.

So, the commitment to the iterative nature of the process and the way of really demonstrating that is in the sufficient allocation of resources, particularly time. While we understand that these things are happening at a cracking pace, a lot of these initiatives being rolled out, and that there is ways to do an accelerated process, it's very important that there aren't shortcuts to building relationships and to engage in the right people and getting them in the room and being supportive about that. There's also, as I've said before, a rich and diverse range of perspectives, key participation of lived experience participants. This isn't just a warm and fuzzy exercise. It reflects the fact that publicly, you're demonstrating that you respect lived experience as a form of expertise that's different but equal to the other sort of traditional expertise in the room. Decision makers really need to develop a genuine understanding of co-design and commit to its core principles.

There is also a real need to clearly communicate the hard boundaries of the project upfront. This has become an issue over and over again and I'll show in the next slide a couple of examples of what happens when that doesn't happen. There needs to be co-facilitation of co-design training and participant workshops by people with relevant lived experience and the final service or service improvement must accurately reflect the service model blueprint that went out of the co-design. And we'll see how real that gets in this, how high the stakes are if that doesn't happen.

So, lived experience participant in a co-design process recently said to me that they felt swindled by not having the hard boundaries of the project communicated upfront. And another lived experience participant who had felt shut down and ignored by this health system for many, many years was re-traumatized by having their expectations raised by being in a co-design process and then finding out that the service model didn't reflect the ideas that were generated through the designing phase.

Now, I hope that makes people understand in just how high the stakes are. A lot of people think that it's just about keeping people safe which is a very paternalistic way of understanding what lived experience people might go through by literally laying their lives on the table the way they do. It's not about risk managing, people telling their stories. This is a much bigger issue around what it means to meaningfully participate - particularly for those of us who have been service users, who have felt very disempowered by the system and the treatment that we've been exposed to.

So, some questions now for LHDs to consider. There's obviously a bunch of them that have been put on the table, but I think these are three really important ones. Do participants, and that includes LHD staff, and particularly senior management that are in the position of making decisions, do have a shared understanding of what co-design is and what a local co-design process involves? Is there sufficient time, energy and other resources to commit to the iterative nature of the co-design process? And are the hard boundaries of the project known and will they be clearly communicated upfront to all co-design participants?

Now, one way of achieving this, probably, quite an efficient and effective way is through a co-design training workshop. It really gets people on the same page. It starts to reveal if there are sort of going to be barriers to a local co-design process and hopefully, the hard boundaries start to reveal themselves. But I think also it has the benefit of starting to build the relationships of mutual trust and respect that are so crucial to an effective, successful co-design process.

OK. So, there is good news in all of this. (LAUGHTER) The rewards. I think the rewards are enormous and I think the rewards for the LHD are the same for the people with lived experience are the same for every other stakeholder and therefore for our communities as a whole. So, it really does foster cooperation and trust between local service providers and service users. It has enormous meaning and value beyond the co-design process. It encourages a sense of collective ownership and community buy-in of local services, potential problems... and I think this is key, potential problems are more likely to be raised and addressed before service models or improvements are implemented. And when it's done well, there is evidence now that shows it's more likely to produce services that are efficient, effective and sustainable.

I thought we'd give the final word to Ann who's a lived experience member of the Illawarra Shoalhaven Suicide Prevention Collaborative. She's been involved in the co-design of a mental health program locally, but very involved in the collaborative way of working. And she's speaking here about the Illawarra Shoalhaven Suicide Prevention Collaborative, but I really think that this applies to any effective co-design process. And she says, “The collaborative is not just about collecting data, they really value our input as people with a lived experience. I feel like my voice matters as much as anyone in the room, even if they have degrees as long as their arms.” I'm looking at you, Margaret. So, thanks, Stephen.

Stephen Scott:
OK. Thank you, Carrie. That was really incredibly insightful, so we really appreciate all of your contributions there. Now, we have some time for questions following these presentations. Lastly, there is just one final slide of some different support and contexts that are available. So we will just have that up as we go through these questions. You can of course, continue to submit questions using the blue hand icon in the right hand corner.

Now, firstly, there's an excellent question. I understand co-design, but as the components of the initiative are already determined, how much real co-design are we able to achieve? So I think that's a question for all of us, but including the ministry as well. And, so, I would just like to start the response to that by pointing out that, yes, we did have a state-wide workshop in October regarding the Towards Zero Suicides, Zero Suicides in Care initiative. And emerging from that was a range of guidelines for the ministry about which aspects of the Zero Suicides health care approach we really particularly needed to emphasise.
And some of those are things like contemporary suicide prevention training that's being delivered through the SafeSide training that we have been providing over the last 12 months and will continue to provide. Other aspects such as co-design, and the involvement of lived experience representatives and peer workers. Full districts themselves though, noting that a lot of those elements that I have just mentioned, are being delivered by the Ministry.

For districts themselves, there's a wide range of elements of this that you are encouraged to develop. And the guidelines that have been distributed about the initiative are not restrictive about that. So they do emphasise the development of a suicide prevention pathway in mental health services, and that has been recognised as an important component of Zero Suicide's health care. But that's the extent of the development of that idea. So there's a lot of space for co-design within the development of that pathway.

There's also just a couple of other aspects, including culturally appropriate mental health care for Aboriginal communities, and data collection issues as well. But beyond that, districts actually are encouraged to come up with their own inclusions for zero suicides in care that are locally relevant and that are co-designed by people with lived experience in your local districts. I think this really goes to the hard boundaries point, that you were mentioning, though, Carrie. So I wonder if you have some further comments that you could make about that. Particularly as it applies to the Zero Suicides initiative, noting that we do have some of this architecture which has already been defined to some extent.

Carrie Lumby:
Yeah, I mean, I think if you take a sort of a purist view of co-design, you can say, well, already, we haven't co-defined the problems, and therefore co-design pulls over, but I think we all have to be a bit pragmatic about this if we really want to see the systems change that we all want. And, interestingly, I think we assume that people with lived experience are gonna think much more boldly than clinicians who have been marinating in a risk culture for a really long time. But my experience of co-design initiatives is that sometimes, mental health consumers particularly, have, I guess, been systematically managing their expectations, if you will.

And so they can sometimes act almost like surrogates for the most conservative ways of thinking, the most risk averse ways of thinking. So I encourage everyone to be thinking, like boldly. I feel very much, in terms of the way the Ministry of Health has framed this stuff, that there is... that we can all think very boldly and creatively. And there is the space to do that. So, it's about really starting to think about what are the assumptions you're bringing that you don't need to, that you can let go of?

Stephen Scott:
OK, thank you. There has been a few questions about that... ..about hard boundaries points. So thank you for elaborating on the importance of communicating those from the outset. We have a few more questions to try to get through in the time that we have remaining. So a question for all of the panellists is, can you share an example of a time when you have been involved in a co-design process that worked well, and what helped to make this a positive experience? So, maybe we'll start with Stephen for this question.

Stephen Adei:
OK. Well, there was that previous example I mentioned, which was one of the best. I've also done some with NGOs and stuff like that. What works best? I guess, understanding, taking the topic, taking the lived experience, treating it with as much importance as the experience of the clinicians or the experts on the topic.

And again, it's mutual respect, knowing that it's hard, the end product is something that all parties are happy with, not just one, and that it's not kind of pre-planned. ’Cause there's some that turn out not so well, they have like an objective in place, they want to head towards specific answers. That's where tokenism comes in. It's like oh, yeah, OK, you think that, but shouldn't we go this way instead? Instead of kind of listening to what lived experience people have to say. And sometimes when they bring up things that are totally out of the blue, that have not been thought about or factored in, that they get factored in. And I think that's part of the iterative part of the process.

Stephen Scott:
OK. Thank you. Carrie, did you want to comment on that as well?

Carrie Lumby:
Maybe we should get through some more questions.

Stephen Scott:
OK. Alright. Yes, thank you. There's a question here for Margaret, which I think is important as well. What advice would you have for people that need to get buy-in from their managers to support a true or authentic co-design process, noting that there's always limitations around there being adequate time and resources.

Margaret Kelly:
Of course. Yeah, that's a really important question. And I think it, you know, touches on some of the things that Carrie said, and also what I refer to in the kind of process and principles of co-design that the importance of engaging the executives and the managers. You know, we know, across the health system, often it's quite challenging to be able to get the kind of middle management layer to have the time and the space to think about, you know, what do we need to do to support this?
So I think before embarking on the project at all, you need to be getting the buy-in of those stakeholders. And it is about, you know, explaining what it is you're trying to do, what you're trying to achieve. Why it's so important that you know, staff and people with lived experience work together in this very equal partnership, and getting that commitment to that process. Not just from your chief executive, but also from the people who are going to really be able to influence the decisions.
And also who may create some resistance if they're not engaged from the very beginning. So I think sometimes we forget that we need to go through all of those layers to think, have we actually got these people on board? Before we dive into the doing of the project. ’Cause we get the group together, but we forget actually, this layer up here, we really need to make sure they've... ..they're on board with us.

Stephen Adei:
One brief note I'd add to that, when you're dealing with management and stuff, don't always use peer workers, because you have them and they are lived experience people for projects, for co-design this, that. Get out, use consumers, that sort of thing, ‘cause you don't wanna take opportunities away from them, different perspectives. Even as a peer worker, you kind of get a little into the medical system as well, you know, you're meant to be in the recovery model. So yeah, that's just something to keep in mind.

Stephen Scott:
OK, thank you. This is a really interesting comment that's just come through, which perhaps we could expand on. It's been touched on, I think a little in your presentation, Stephen. And this participant says, I understand that having people who have had a recent experience of thoughts of suicide and have recently used services would perhaps provide a richer, or more relevant input and feedback when it comes to Zero Suicides and care. However, as a person who was bereaved by suicide in my teens, and now in my 40s, the experience and wealth of knowledge of lived experience I have doesn't make my experience any less relevant because of how long ago I was bereaved. You were making some reference to that topic. So would you like to comment further on that?

Stephen Adei:
Yeh, I actually will. I kind of wasn't saying that, for example, my experience was not relevant. My thing was more that sometimes in LHDs and clinical services, they kind of think, oh, basically, are they at risk? Is it safe enough to work with them three months after, five months... ..So sometimes a lot of people who are recently out of the system of mental health, or as Carrie said, maybe have a CTO, they don't get considered for things like this.

Obviously, per your memory, your experienced that kind of thing, no matter how long back it happened, it still stays with you. So if it's something that you want to be engaged in, by all means, I'm not dismissing that. I was just stating that in that particular case, it's just an issue in LHDs, that sometimes they have to consider people with the recent experience, as well as people who have had it in the past, have come through it, in... ..I wouldn't say... recovery is different for everybody, but they use the word stable and recover, that kind of thing. But yeah, that's kind of what I'm getting out there.

Margaret Kelly:
And I think... sorry, Stephen. I think, you know Stephen you referred to it's also about... It's not necessarily about the distance or the time of the lived experience. It's about who wants to be involved in this. Who can bring something to the table? And so for me, it's about having those really important conversations up first about who needs to be involved in this and who should be involved in it? Regardless of the length of time of...

Stephen Adei:
And I think as Carrie said, before, it's about giving as much diversity as you can. So if you had one person, maybe 12 years removed and one person one year removed, you just get balance I guess. So, that's also something to consider when you're looking at people.

Carrie Lumby:
I think instead of being risk managed, people need to be supported to make sense of their experience in a way that's meaningful and productive to them.

Margaret Kelly:
Yeah, absolutely.

Stephen Scott:
Thank you for commenting on that. Now, we are virtually out of time. So I just wanted to just ask one final question maybe to wrap things up a bit.

So given that co-design is a very new and dynamic area, services can feel as though perhaps they're not ready or they're not fully across the latest developments in the area. And given that we want to encourage and really enable districts to get started on co-design work for zero suicides in care, what advice would you have for districts that may be feeling a little daunted or overwhelmed about getting started? And I might ask all to bring... to make a closing statement on this.

Stephen Adei:
I'd actually go with Carrie's. Don't be that risk averse. We've had instances where for example, the community hasn't wanted to work with a consumer, due to suicidality, he didn't get the help he needed, got worse, luckily, then got help. Now he's doing great. You know, take chances, basically. And that's what peer work is about.

Margaret Kelly:
I think for me, it's about...if you're feeling a bit overwhelmed, but then I totally understand that if you've not done it before, it's about getting help. It's about reaching out and saying, look, I'm not entirely sure about this, I really would like to be involved and I'd really like to give it a go. But I'm not entirely sure. So, you know, reaching out...and even though co-design is being talked about more and more often now, it's actually being done a lot in a lot of different settings.

So, I think finding the people, and there are likely to be people in every district, who have been involved in this kind of relationship and, and these kinds of projects. So finding out who they are, that they can help you and support you. And also of course the support that's being offered by the Ministry etc, in doing this particular initiative.

Stephen Scott:
OK. Carrie, the last word goes to you.

Carrie Lumby:
Yeah, well I just think following on from Margaret, when you're reaching out and looking for help, there are existing lived experience networks out there. There are informal and formal ones already in your community. So draw on those assets. And those people will probably tell you what you need to do.

Stephen Scott:
OK, thank you. Now, I would just remind everyone of the slide that's up, finally, there's a number of email addresses there for myself and Tegan Cotterill at the Ministry of Health. There's also Sue Murray, who we have engaged to support the co-design and implementation of Zero Suicides in Care. And, of course, the resources at the Agency for Clinical Innovation as well, and in particular the co-design capability toolkit as well. So as Margaret said, I would just really encourage you to draw on all of those and other resources as needed.

So just to wrap up, thank you all very much for joining us for Zero Suicides in Care co-design webinar today. We look forward to talking to all of you again, very soon. This webinar will also go on the New South Wales Health website as an ongoing resource for people who were not able to join in virtually today. I hope everyone takes care and stays healthy and well, and as I said earlier, connected. So thank you very much, and we'll see you next time.

Margaret Kelly:

Stephen Scott:
Thank you.

Current as at: Thursday 10 September 2020
Contact page owner: Mental Health