Episode 7: Recovery (Part 2)

In this episode of the Irish Journal of Psychological Medicine podcast, we return to our panel discussion on the journal's special issue on the recovery approach. Thanks for listening. We'll rejoin our conversation. I was struck by one thing you said there that it's kind of only by the grace of God that you were on this side of the table as opposed to the other side of the table. And it actually reminded me, I think it's different wording, but it's the verbatim statement of a theme from a qualitative piece of research that's also going to be coming out in the upcoming issue. May, I suppose, written by those who are working at Kairi firms. Do you know, so, and I know Agnes and Pat, you're both very heavily involved. You're on the board of this upcoming project and that this was a kind of qualitative piece looking at other therapeutic communities, mostly therapeutic firms. And I wonder would either of you like to kind of reflect on that? Because I think it's very directly relevant to Donal's last piece there. Yes, but before I do that, I think what Donal has given us is a beautiful description of trying to shift from that pathological perspective to a more respectful perspective around what we conventionally call "psychotic experience." And it brought to mind my own history and why I got into this business in the first place was a fascination as a very young person still at school. For some reason, it came into my life a fascination with surrealism, the artistic movement of surrealism, but the poetry and the visual arts. And I don't know why I particularly became this way back in the 1970s in Cork, but the surrealists were fascinated with the whole territory of mental illness. And in fact, in a lot of their works, they sought to reproduce states of mind that we would now conventionally call psychosis. Dali famously coined the term "paranoia critical method" for producing the images that he did. And I'm always struck by the story of Leonora Carrington, who some people in Ireland may have heard of, or may not, there was a Irish Museum of Modern Art at an exhibition of her work about 10 years ago. She was born in the UK of an Irish mother. We claim her as Irish, and she, herself identified greatly with her, what she called her Celtic kind of past and that, but she grew up in the UK and rebelled against the bourgeois society that she had been born into, run off with the Max Ornst of very famous German surrealist painting and lived in France. During the war, at the start of the war years, she was living in France with Max Ornst, and he was interned, and she fled over the border into Spain, and had a major breakdown. She became psychotic and ended up in a psychiatric unit in the North Spain in Santander, where she was subjected to treatment with Cardazzal, the original kind of shock-inducing kind of therapy. She suffered a great deal in there and she was there for about six months. She eventually escaped. It's a long story. I'm fascinated with it and I'm kind of writing about it at the moment. She ended up in Mexico, where a lot of the surrealists had fled after the war. And there, there was a French doctor who was kind of friendly with the surrealist, and he said, "Oh, you've been in a psychiatric hospital. You've experienced psychosis. That is fantastic." Not you have to shut up about this and don't tell anyone about it. This is the gold that we're after, you know. So you've got to write about this. You've got to paint it. So she did, and she wrote a monograph called Down Under about her experiences. Very strange book, like a lot of her images are very strange, but beautiful and weird. And to me, what you were describing, Donald, is that sense of and encounter with psychosis. That isn't saying, "This is meaningless. This is to be God-rid of. This is pathology. This is part of our human experience that we do want. We want to get rid of. It's disease. It's not saying that psychotic experience isn't painful. It's not powerfully painful. And dangerous sometimes. It is. But it's saying, "This is part of our experience as human beings on this planet, trying to make sense of the whole damn thing that has insights for us." And it's not insignificant, I think, the very, very many of the people we regard as our most important artists, our most important poets, our most important thinkers have been people who have been in that territory of what we would call "serious mental illness." And, you know, K. Jameson, psychiatrist in the United States, has written about bipolar experience from, you know, touched by fire, that very encounter. And Louis Sass's work, psychologist in the States, has written about schizophrenia. From that point of view, from talking about psychotic experience as something that modern art has sought to really mine in terms of bringing out the meaning, the importance. I'm fascinated with Beckett. We were talking about this earlier, about the work of Samuel Beckett, is now something that I think a lot of psychiatrists and psychologists are looking to as an exploration of the same kind of territory, same kind of experiences that we meet clinically. Casts a different light when you see this as something that artists have not seen as something to be got rid of and zapped and shut up, but actually something fascinating, something important, something wonderful in many ways. And I don't say that lightly because I do know of being a psychiatrist for 40 years. I know how painful this does. It's important not to remind the society not to tell. It's the fact that it can give huge positive things to people's lives. Yes, yeah. And it's for me then the challenge of the recovery approach is how do we get professionals who have the necessary humility? I think was the word that you use current curiosity, openness and respect for the strange is the kind of way I'd put it. Yes, that you need to have that meaningful engagement. And as a consultant, I've had SHO starting their training who come maybe straight out of medicine and start saying looking for the diagnosis and how do the what symptoms fit with this? And I usually would say to people, back off, stopping a doctor for a while, what I want you to do is adopt the position of being a journalist. Go and talk to this person and come back to me and tell me about their life, not a list of symptoms. And how do we get there? Is a question. Kiri Farm is one of the papers in the journal is about this and Agnes and myself are on the board. We're privileged to be invited. I feel anyway of a wonderful initiative and we pray and hope that it'll get off the ground as a therapeutic farm. And we already have a therapeutic farm in Ireland in Shliella down in Cork, but Kiri Farm would be on a on a bigger scale. And the paper in the journal I think brings out from the research literature on on on other therapeutic farms are in the states and else where the research that has been done has pointed to the therapeutic importance of things like solidarity, community work and even I'd use the expression meaningful activity rather than work because some people work isn't and work drives a mad, you know, it's not work that they want. But meaningful activity, engagement with others and freedom of choice and things like that I think comes out from the papers as being important. And that's what I think we're hoping in Kiri Farm when we get it off eventually get it off the ground which we will because John McKeon the the founder of the project is a man who's not going to not not let it not. He is a force to be reckoned with. So you might want to comment Agnes as well. And I think in the paper one of the things that's very evident is the power of kind of the collective as a community and as a community in terms of the lack of hierarchy you nearly feel it coming off the page of that respect for different kind of voices. And I think the other thing that strikes me about this piece of research when because it's a piece of research where people have they have interviewed people from the different farms in the states. Their commitment to you know we use the phrase so often reflective practice but really their commitment to that and their commitment to being kind of a truly learning kind of organization that they are all the time lost. looking at what's going well, but equally how can we improve? How can we think differently? How can we keep the values? Because one of the things when I was reading the papers, the thing that struck me was like, this is the paper that talks about values. And I think that that's an important piece. There's not an acceptance that the values will just automatically carry on. There is a constant attention to cultivating that environment, that those values keep going. So it was renewal and there's development. And I think that that's maybe some of our challenges, sometimes in the mental health system. Years ago, somebody asked me, he happened to be a hinter, as being my PhD with supervisor, about recovery. And I think when I saw that word all those years ago, I described that I had to recover my own value systems. I've had to recover them so often. And I think the big challenge, sometimes the insin, the way the systems are set up, the structures, we all came in to do good. The structures erode our values. And we end up in that space that it becomes a protection of ourselves rather than a non-destruing engagement with another person. And that's the piece I think that when you're in that paper that struck me, it was about a constant attention to cultivating the values and keeping the values embedded within the system. And so that they just didn't get a Roger, or an acceptance, you know, that the values would carry on by just people being together. - Sinterson's a lovely dovetail actually with another one of the papers in the special issue, which is really very, I think almost elegantly put together a qualitative study which explored mental professionals, perspectives, opinions and attitudes of the state of mental service users' rights, which I think, from, you know, it's amazing now with the R&C CRPD where we now have all forms of mental illness as it defines as psychosocial disability, which gives legal weight. It was almost a missing jigsaw puzzle piece, but tell me how. But what really struck me from reading that paper was how there was this real, bit like what Agnes spoke there, and there was this real challenge for the mental uprofessional. There isn't typically speaking that much money to be made in mental health, let's be honest. Most of the times people get into this field because of a passionate desire to do something that's ultimately for the benefit of others to struggle, or to help them when they're struggling the most, to be able to be there, to be kind and compassionate and to hold that space so that people can heal. That's, you know, that's literally the job description, most mental uprofessional sign of four. What this paper really struck me about it was it spoke to, this struggle to implement rights-based care due to that system that was in place. Sometimes there was a really nice description of, I suppose, obviously limited resources like Karen Swell, if we spoke about earlier on, but paternalistic attitudes, but then the challenge when people were really struggling with their difficulty when they felt that the need to actually implement rights was directly kind of in conflict with their own authority, training, or importantly, their perceived responsibility in that space. So I just thought of all the papers in the special issue. I thought it was really timely, particularly considering the Irish contacts now of the long awaited reform of the 2001 Mental Health Act. And I just thought it was a really interesting and important, I suppose, observation of the data that was collected was that really there is this ongoing challenge. So it's not going to be as simple, like even in Ireland, I imagine when that change comes in and the law changes a beat, there'll be a huge shift and there'll be a huge ask of so many different mental thresholds, eight to get updated in terms of their knowledge of what the legislation is, but B2SHD say what happens in the real world. - Yeah, I mean, I don't just struck by that, I mean, I struck by a few bits in that paper as well that's like when you enter a system with a certain set of values, and then that system, you might say, doesn't maybe adequately meet those values, or you have a perception that doesn't adequately meet those values, and this is from a service provider perspective. It kind of wears you down all the time, and it's maintaining positivity. - And this is the big, and this is what I love about Archie's recovery college, a blatant plug here, Archie's recovery.ie. What I've noticed in recent years, I'm only in the job now, I've got two and a half years, but since I started working there, there's a beautiful thing that's happening where mental health professionals are coming to us when they're struggling with their own mental health, because they feel that the barrier between us and them is no longer there with us, because we do everything through co-production, we bring services of family members and mental professionals together, and one of the things I love most about the recovery colleges is very hard to distinguish between people in that way. Everyone's here to learn from each other through the whole process of just being human and developing insight and wisdom from just having conversations, but it's a great development, I think, but I think that speaks to that piece as well, where we're constantly, I suppose neglecting mental health professionals' mental health, as well, there's very much this idea that, I think in modern times, life is just hectic, it's so busy, caseloads just keep on going up and up, and that space you have obviously implement, formalized hate to our processes for support, but that reflects a practice space of clinicians being able to just take a step back and focus on self-care and have that opportunity to be kind to each other. It's just so important. - Can I come in maybe on two different relations? That's one is the burnout piece, and then we haven't said the word burnout for you. And we've all seen it. We've all seen it in ourselves at various stages, and we've seen it in colleagues and paths at earlier, and I think it's really important to acknowledge often, yes, clinical staff are powerful, but they often don't feel powerful. They often feel helpless in a system that they feel isn't valuing them, and it's just this work to do this work properly and well. You need to be present, and you need to be healthy, reasonably healthy yourself, to be able to engage with people. And I think that is a real challenge, and I think a lot of staff, and I think what happens then as well is people get excited about new ideas and new concepts, and they give them a go, but then things don't go well, or they're not supported, or they get funding for one year, and then they don't get any funding after that, or the person goes on maternity leave and there's no backfill. You know, all these things that happen all the time on the ground, and they get warring down, and they say, "You know what? It's easier if I just stay in my little lane here, and I don't risk myself, 'cause they're risking themselves, when they try to do things in a, and it shouldn't, it sounds like it should be easier to do it authentically, and I think it isn't a good system, but when you're in a challenge and overextended, - You're overextrous, yeah. - Yeah, you know, you're giving more of yourself, but and then there's another thing is of course, we're all multifaceted people, so we've demands at work, and we've demands on all the other parts of our life, and those have been flow, you know, as well. So the other bit I was just going to comment on was, so I've been really lucky, I've been involved in setting up two teams from scratch, which is a really, really nice thing to be able to do, and culturally it's much easier to create a culture that you want in a team that you start up from scratch rather than inheriting something, you know, and then you're trying to evolve us, which is harder. It can still be done, but it's harder. And so that, I think that, that, that, I've been really lucky to do that, but I've still witnessed within those teams, and then in other teams that I support through the program, that staff, you know, they're worried about risk. Risk comes in a lot. So when you're trying to work in a new way, a more dynamic way, often you're being more positive risk taking in this way, if you're going to be truly recovery orientated, you're going to potentially be taking more risks, less paternalistic, you know, standing back, maybe more awaiting, you know, and so that can be really challenging for staff, even though lots of our policy, you know, it says recovery and all those things, it doesn't always back up that risk taking bit in a way that's robust and support staff. And so I will notice that sometimes it can take staff quite a while to get used to the newer way of working, and then they settle in with some never settle in, 'cause it's too much, you know, and they prefer to go into a space that feels safer and more mainstream. And so I think if we're going to change and continue to change, we need to think about that, how do we support our staff and their health and their mental health? What is reasonable for staff to be doing every day? 'Cause it kind of feels, I don't know if any of you have read that book, Side Effects, it's by David Haslam, it's about how, he's a retired GP, he headed up, I think, nice at one stage. And he talks about how in healthcare, there's ever, ever, ever growing demand. Demand is just ballooning and complexity is ballooning. And so now, you know, we should be looking at people, not as one simple thing with a technological solution. They're much more complex, but it's more complex. It requires more time, it requires more people, it requires more perspectives. You know, but actually as a society, we're getting very concerned now, but all the cost in health. And you know, every year you see it, the budget's gone up to this, the budget's gone up to something, we've got weightiness and we've got, you know, and mental health lags behind a bit because it's, you know, acute hospitals as well, the attention is. - It's like a parody of a steam. - Yeah, so now we're for going to do all of the things that we really think we need to do. As a society, we're going to have to say, what we're going to have to invite. And I know I said this early, but I think there is a piece around all of that. It's culture change, it's different attitudes to risk, it's different ways of practicing and being, but it's also about resourcing ourselves differently and protecting our staff. I think to allow them to deliver the work in the best way they can. To link it to what we were saying earlier in terms of having that reflectivity on your own practice that's key to maintaining those values. You know, there's lots of ways to do it and me and Pat were talking earlier about the basing it on the philosophy and investigating it from that angle. In our training and the psychiatry training, we all have reflective practice in terms of balance and reflective writing. I think some other avenues, narrative medicine is a new kind of string to it that's kind of coming in and becoming very popular. There's loads different ways you can reflect, but I think you have to be reasonably well to do that, reflecting, like, to have a little bit of time in your work. And I also think it's about a welcoming discussion level of different perspectives. Like, sometimes I feel that within mental health space we've become polarized in, you know, you get just clased into a camp very quickly and very easily. If you raise kind of a question or a critical question or you have a different perspective of something. You seem as problematic or your challenging system. So if we want to embrace multiple perspectives with people we engage within a day-to-day basis, we need to lift that up and be much more open and much more willing to have kind of critical conversations and not feel that if I, you know, if somebody has a different opinion or a different view that they're anti something. And I think so we need a kind of, you know, if I could get a little eraser and erase a word in psychiatry, I would be erasing the antipiece because we get so easily put people into those boundaries. I mean, it's not listening. You end up on an end of a poll and you don't listen to words actually. Neither of you are really on the other end of a poll. You know, you're much keen. I think that's something that we are all trying to work towards one common. But there's a real injustice in the way the mental health system is set up. And indeed, the funding structure whereby depending on where we are in the country, you get, you know, a fully sourced MDT. And I think one of the things that happened obviously, you know, we all know the challenge of managing like the health budget. But I think what happened in certain cases because you know, psychiatry and nursing are seen as the backbone. Those were the posts that were prioritized. So teams automatically became less biosecosocial as a consequence. And there's less opportunity then for debate, discussion and reflection. And even the way an MDT meeting structure, it typically is led by a consultant. Psychiatry is in their way of functioning and the team determines the narrative, determines the entire discussion. It'll either a, you know, potentially one side of the coin would be where literally just going to be really primarily focused on is this drug induced or is this, you know, what's the particular diagnosis of play or B, we're going to, you know, really adopt that genuine multi-disciplinary perspective where we're looking at all those different opponents of the three sides of the house. In one of the teams I work in, I don't, I chair the MDT in one of them and the other one I don't. And I took ages where everyone stopped looking at me. You know, if people kind of look to you and you go, no, no, I'm not, I'm not, I'm not sharing this meeting. But it's fascinating, I think, from the lived experience space because just due to, you know, challenges within the way in which peer support will say is structured and integrated in, there's been, you know, there's been some areas around that has peer support workers and some that don't. I think it's a profound injustice. It's a postcard lottery, but to another level because it's the, if there's a lived experience person in that conversation, I think there's a potential for the dialogue to shift or for the conversation to shift. And without that, I think that that is went through by a psychosocial treatment will be available to people. And I think people's presence at the table doesn't always mean that there's a conversation. So I think we have to, you know, think about that, that just putting people around the table. So I don't have the same particular perspective that, you know, the person who's chairing it can, we'll always direct the narrative in a particular direction. Because I think that if that person has a skill set or has a mindset of inviting alternative perspectives, because I think that's what we want is to invite an alternative perspective. And even in the team meeting, I want to, so, and I don't think that that, I think anybody who's chairing that has that skill set of being an openness will have a conversation. I don't think presence or a matter of means. It's something you hear from trainees. So, you know, I, on to the recently I was the vice team, one of the vice teams in Quark. And you hear from trainees a lot, the difference is going around different teams. Like, you know, they can have completely different experiences. And even you hear it from other staff members, you know, what I know T does in this team actually isn't the same to what they do in another team. Or, you know, it's, it's really interesting or, you know, the piece around psychiatry and power is important. And we can't ignore that. You know, and that we need to pay attention to that and we need to keep working on that. But sometimes we can attribute too much, you know, to just the discipline bit and it isn't just the discipline bit. It's broader than that. You're absolutely right. And I think it's about the culture of teams and the culture of, of an organization. And we become very fixated on the machinery, you know, of teams. How many psychologists there are? Do they have the right numbers, etc. And we don't pay enough attention to how a positive recovery focus culture can be, can be generated, can be sustained. And that's something about leadership, you know, and I think we as consultants often have a big role in that. But, but often our role is about ironically turning ourselves down. Yeah, yeah, yeah, yeah. So that, there's more space. Yeah. Because what you hear about teams that are not functioning well is where the medic is the dominant voice and doesn't allow. I think there's two. I think there's the medic, the dominant voice that's common, but the other one is not to take leading. Yes, yes, yes, yes, yes, yes, yes, and they're paid more than anyone else to make the decision. Yeah, and the team are very frustrated then. Yes, yes, yes, yes. But I agree with you. I think when peer support workers come into, to an MDT environment, what can happen sometimes is because of the way maybe the value system they were given, their training, they're almost set up to be indirect conflict. Yeah. And that's profoundly problematic as well because you're literally setting somebody up to fail in that context. And that's where I know co-productions are new buzzwords, floating around and everyone's sick, innovation fatigue. But it is so incredibly powerful. You know, when you're able to build something together from ground up, it becomes more relevant, meaning applicable. And I think the work that I gave to somebody and you're on VISTA as well, the work we're doing on the VISTA research program around PPI is really, I think it's quite groundbreaking. It's what we're doing is we're scaffolding, we're preparing people, we're giving them the understanding of what, well, doing our best to give them the impact, that wisdom, the knowledge around what research is, but also the influencing skills. And maybe explain PPI for people just to use some people, like, yeah, I'm used to acronyms now working on the HSC. So PPI stands for public and patient involvement. The idea behind it is very simple. So it's this concept of nothing about us without us really. So if you're thinking of developing or answering any type of research question, the idea is from day one, you get somebody with lived experience of whatever it is you're researching involved. The idea behind their involvement is that they can speak to the degree to which the way in which you've conceptualized and designed and made sense to this problem if that shines with their experience. And they can also be involved in actually interpreting and making sense of the data that can be involved in the data collection and process itself and then really importantly and what to be actually do with this. How can we translate this research into the real world? The other side of that as well is the general public involvement, which is a really nice almost a sense checking exercise where we're getting members of the general public to ask the question, is this a good use of public money? Doesn't make sense to people on the street? You know, the work that you've done here, do we see it to be of value? It's a really important component of modern research, but the problem has been in the mental space. There are a really unique specific challenges. Power that we've spoken about at length would be the impact of mental illness and self-esteem and the ability to feel like you're not just at the table, but that you can actually change things and the book isn't just stopping by the basis of this and more senior research here and they'll just say, well, no, actually we've decided we're not going to do that. It's a real challenge to do it right, but we're doing our best to bring about meaningful change. I think even from our experience of this to anyway so far, even from the grant application process and the early days we're in, there's definite optimism anyway. I think I have two quick thoughts. The first is on the leadership side of things. I think what we're hearing from the group is that really good leaders are leaders who you can bring about shared. leadership within their teams and that's both developing people and then having the lack of ego to step away from it and actually let them have that And I think if we had pure support workers in every team, how much powerful would that be to have, you know, the shared leadership given to people with actual experience of it But the second thing you were mentioning there about the ongoing stigma I'm just having a thought to myself like because we've talked about the experience of psychosis a small bit and how is is an experience for a certain proportion of the population but it's not for another portion of the population and it's like how do we maybe is there anything that's psychiatry or or people who've experienced that or or any other stakeholders could do to destigmatize it for all the people who haven't had that experience Lots of different things have been tried and I mean tried like animations and film and book, you know I think any spoke about broken talkers those it's about I think this probably isn't the right phrase, but you know It's hard to hate up close, you know people say that it's about that human understanding that connection the experience You know, I don't know if anyone else is someone in their household who you tell them something repeatedly And then they say oh this just happened to me and I'm like I was telling you That's that experience is right, you know, whatever it is. There's nothing like experiencing something yourself But if you can't experience it yourself and contact with someone who has genuinely experienced that themselves or I think through arts then is the is the way of Sharing that in a way that sometimes is beyond language as well. Yeah, that's the culture shift that shifts is a consequence and our understanding and even I think some movies can profoundly alter even though so many of them have failed miserably in the process and but That there's hopeful messages to be shared really interestingly and detect published a study we worked with fair city I remember that so I was right. They to write a script about somebody struggling with psychosis And coming out the other end not fully bouncing back but on you know on the recovery journey and it was it was fairly optimistic but What was really interesting so we wasn't the only nationally representative sample still conducted on mental literacy in schizophrenia And what we found was that people who could identify Schizophrenia from a vignette which demonstrated the higher mental health literacy. They stigmatized people more And there's a huge does decades of research now and is a really strong emerging finding and that is that unfortunately Prime if we focus on the bio genetic causal explanations of mental illness so that psychosis is We'll just say for argument sake is a disorder of the brain. It makes your brain fundamentally different from others That means your behaviors unpredictable in my contrast you and I feel unsafe So it's this piece whereby I think on Finding a way to unpack that from our collective conscience I think or just the way in which we view and make sense of psychosis. I think would be really powerful I'm not sure exactly how we do that And but I think a big piece that has to do with this idea of meeting somebody who's okay now You know who's who's may still be you know be it here in voices or have very strange beliefs or you know still There you know, it's like this hasn't been eradicated from their lives, but they're getting on with their life Is there anything to learn from the newer affirmative movement? You know like who strongly identify with my brain is different. I do see the world differently I don't you know I we're talking about different things, but there's something I'm powering And I think that's something you spoke earlier as well, Pasha and Agnes about you know It isn't there isn't something wrong with me. It don't pathologize me Yeah, yeah, this is part of human experience Is there some way of tapping into there's a whole mad pride movement? Yeah, you know I ran that and and and you're almost radically owning the experience and screaming A matter from the main top so I'm always very very radical but it's a bit scary, but in but particularly in conferences where you get people who are the old American adage of own your trauma and get up on stage and say it to the world and That's no good to anyone because a you're putting someone in a very vulnerable position and b That's the exception as well Yeah, you know, and this is the problem that I have you know, just this like for me recovery is is ongoing It's lived. It's the realities of every day. It's me feeling safe when I go home with my wife And it's it's the and that's where a recovery college is so powerful So we've just developed a recovery education course on stigma Which shine in collaboration and the key part of that process is A you see the value of psychiatric diagnosis, but do you see what you've lost as a consequence of being labeled? And and you decide who you share what with waiting for what Yes, so there's a balancing piece that needs you You know, you're just talking about stigma there and You know, we focus a lot on the general public But You know, maybe we need to put the lens back into the system You know in terms of looking at you know, or how we perpetuated as Intentions how you know, it's Wonderful to have a peer worker on the the team But everybody else thinking stays stomp and not acknowledge their own mental health and And mental health challenges that they might have had and that in itself says something about how we Recreate that stigma at a professional level. I think staffs Stigmatize themselves sometimes and I think one of the ways that manifests is by not having high enough expectations For themselves for their teams and for you know for for their patients That's something that I've definitely felt I feel like I sometimes I look to us and I go do we have Stockholm syndrome? You know, why aren't we cross our why aren't we you know? I sometimes even why aren't we prouder of some of the thing you know something really good stuff for doing And I think that you know why aren't we cross that you know, I was struck when I was reading Yeah, and I thought the the narrative around the physical health yeah and the issue around we Uh On medication and I think I'm why aren't we crosser with the drug companies? Where are we not reporting all of this? And like David he has been trying so hard over the years to get you know that we have accepted and array of Impacts that we call side effects They've had huge implications for people people maybe we take medication for for carnivore to disease or things Mind accept them that easy, but it's nearly like we have become complacent There's something around the administration of medication and it's not biting for you know Whatever you want to call it cleaner drugs or yeah, once they don't have that Yeah, and they've stopped investing in drugs now anyway You're gonna say something there don't know this You always find in the mental health space for example parents will scream and shout to get me They needs met in terms of their children and their supports and One of the things that always struck me is How rare it is to see a service user led protest You know people just go and This fed up I'm enraged my human rights are being neglected here My basic quality of life like just to give you know access comment earlier on Like there's data that that demonstrates some drugs that people take that can lose 15 to 20 years of their life as a consequence So like that that is and that's a real balance people strike between their physical and mental health And it's a it's a real tough decision to make but The problem though is that because I get a stigma so powerful People won't own their lived experience in that way because they know you could get Actually your mortgage protection could get rejected people don't want to date you people don't want to be your friends People you know all the very essence Or that the basic components of people's definitions of recovery can be robbed of them by virtue of their disclosure The 15 to 20 years like the medications definitely are playing a role in that But there's it isn't just it isn't just and it's you know the way because sometimes I worry You know that the people take that message that are making a choice around their physical or Yeah, so much what you want And thank correct medication that transforms lives. Yeah, and it is such an For people's never-corpure journey and it is absolutely essential for someone people But I just on that I mean I think one of the things that that is important now is is the growing respect for deep prescribing safely And I think we're only really learning about that um, you know because And I think we have to start having conversations with people very clearly When they start on medication about how To come off and how not to come off Because very often I think people do run into side effects and then stop And then get rebound withdrawal effects which compounds the problem And so the work of like Mark Caravitz and people like that. I think it's so important to us You know about really spelling out. Yeah, how long it takes sometimes to safely Yeah Deep-rescribe and and to safely Navigate those journeys. It's difficult and and I think that's again We're a trusting yeah open Yeah, relationship and where the position of the doctor or the nurse or the professional is so important in terms of Having a transparent and open Convert Conversation with people about medication the pros and the cons so that that Navigation of deep prescribing if that's what's going to be done doesn't fall foul You know very because it can you know if someone hides what they're doing from you You don't know what's happening, you know, and then but if they if they feel you as hostile to that journey Well, then they're not gonna tell you you know, so it it again comes back down to what I've talked about as Professionals we need to know yes about the drugs their side effects the doses, but we also need the human openness Is possibly even more important to be open to engage in that journey and to have to be able to build a trusting relationship Again the relationship with the person prescribing becomes center stage not just you go to a clinic And they open down the dose because that ain't gonna work when with with the drugs we use the drugs we use are really serious stuff Yeah, and they need to be managed very seriously and carefully and thoughtfully and in that co-production Kind of philosophical framework Which requires as I said the human Non-technological aspects of to be to be the most important actually to enable us to do that And I mentioned something really quickly in relation to that professor Brian O'Donoh who and is leading At HB funded grant at the moment looking at exactly those things that you're talking about so how do we Like how do we look at all the evidence that they're right now and develop guidelines that say you know that we can and have maybe a Technological kind of app type support where you can show someone look these are the different options These are the pros and cons these are the ones, you know, and how can we maybe even say to some people well actually with your particular profile We typically maybe do this one or this one so your gender so your gender plays a role And then at what point do you start talking about reducing and how do you do it? How do you deep prescribe because actually they're we're not clear we're not clear on you know And so this really nice work being done on that at the moment. Yeah, and I think that's the the issue for a lot of people Yeah, is you know finding that evidence. Yes, that we support them to do this Yeah, and then you can do a shared decision on it because you're sharing the same information Yeah, but if we don't have a conversation We you know people say what we we're putting people at risk by coming off medication But I kind of say we put a people at risk by not having the conversation and at more at risk because they are going to do it silently And from the research we've been doing we know that they're not telling and they are You know going on the net. Yes, they're finding support groups. Are they are common stopping and it's only over a period of cycles of They learn by themselves a process. Yes, and one other thing that used to happen that I hope Doesn't happen anymore was that when people came off medication they were often discharged from service. Yes So it was like that was it the rest of the yeah, you know And you know see and often you might you might be saying I'm not sure this is a great idea right at this time But actually if they came off medication, they were often discharged You know at a time when actually maybe they were the highest risk, you know or you know you needed to But there are other things within you, you know, yeah, and I also think that's in itself says, you know if we think that When somebody comes off medication that is discharged. Yeah, that from a recovery orientated. Yes. What are all the other Yes services and resources and that we should be having within the service. I mean the discussion is so interesting There's so many different ways we could go. I'm kind of remiss to To bring up what in terms of time we've kind of just under 10 minutes left And now just to highlight in this issue we've talked about a few issues in terms of physical health monitoring making meaning in psychosis um kairi firms lots of therapeutic firms more generally There's other articles in this issue about focusing on the qualitative experience of travel or mental health Um, there's numerous other issues we could focus on um in this article but for the purpose of time and Some finality with the time we have left I kind of have a one central question for the the group and we might go around the table And see what people's thoughts in that are you know in an ideal world uh, you know what would be The ideal future for the recovery approach in Ireland and uh, we might start where do I start with Donald's around the site and we'll go around Okay, it's it's interesting before this podcast but where I will have a conversation and And I think that that's specifically linked to how The word recoveries in the lexicon of practitioners. It's in all the policy documents and it's literally everywhere But there's a profound risk that it becomes professionalized and colonized to make services more acceptable and competitive and detaching it from that lived experience ocean movement we spoke about earlier on so it's it's almost like it's It's lip service to the idea and so it's just so disconnected so in an ideal world all efforts would be authentic and and linked directly to the volume system we spoke about and and there'd be a very much a presence within the system of lived experience and I think that you know involves a like the physical human beings there but also that perspective being championed and I think that that's that that's really crucial the other pieces A lot of times people with serious and or severe or enduring well that these kind of categories use these people feel abandoned to this work And a lot of times it's the most focal well highly recovered people And who are in employment to you know have Large social networks and feel very comfortable comfortable comfortable and confident to speak about their experience It's those people who I suppose are reflected in service change and in policy development So it's the democratizing of that whole piece And whereby we're going out and contacting and and doing the research to learn What are the experiences of these people and how do we bring them in Karen? Do you have any kind of final thoughts on the Um, sorry, I had a thought now and it's no gun And come back to me come back to me. Yeah, I did Agnes. I think your question was in an idea of the word. Yes. In an idea of the word I don't think we'd be talking about recovery I think that you know we have In the mental health space we're always picking people up after they fall into the river I think in an idea word we would move upstream And we would be starting to look at the factors that impact on people's mental health I was recently just thinking about this in terms of we were having a conversation with somebody else You know the social determinants of mental health And you know someone would be saying maybe we should change that To the politically modifiable factors that impact mental health And if we started talking about those You know we might get a bit more traction because you know sometimes we talk about social terms and it's nearly like as if it's my fault That I am in poverty as my fault that I missed out on education It's my fault that I was born into a farm small farm in the West of Ireland didn't get to university that I was starting You know Whereas if we look at this from a politically modifiable perspective then You know we might be Get some traction so that we don't have to Really talk like much about The state of the mental health One particular problem with the recovery approach is it's Focus on individualism and personal responsibility And and I think that Particularly is in my mind direct conflict with well, what my society was at least in my early years growing up of this idea of Also, I'll actually look at a for each other and keep an eye on each other and and it's this sense that you know I think Genuine ideal Today, you know, we are what what's the dream the dream is that we all keep an eye on each other and we all make sure we okay And that we're preventing those moments of crisis when people are in the river Long before happening absolutely Pass take everything that agnus has said and just just an example of that from my own work now is mainly with with asylum seekers and refugees and um, you know going back over the number of years The single most important thing that helped The mental health of asylum seekers was when the government changed the policy and allowed people to work So people could get a work permit after they've been in the country for six months And now people the jobs that asylum seekers do are all the work the jobs that Irish people don't want to do They're working in meat factories in recycling places Very often in nursing homes and and care homes and that But just being able to work rather than sit in direct provision Earn a few bob. They're very lowly paid, but it gives you some lever on your life And and and that was a direct political policy decision that affected a whole cohort of people And my experience was was was profoundly important. It's not to say that asylum seekers lives Are changed dramatically. They're not but that sense of a mental health benefit You know was was brought in by allowing people to work that one simple thing But in general, I think um it's very hard to say you know what in 20 years time if the recovery approach kind of came into being It's like for me, this is a kind of revolution It's a bit like the revolution that I've experienced in my lifetime say around women's rights and place of women in society and around gay rights. It's a civil rights movement and it works on different levels. There's a legislative point of view, there's a policy point of view, there's a cultural point of view and it's there's different ways of changing the society gradually. Now, by far from perfect in terms of women's equality, is far from perfect in terms of gay rights and that over the last 20 years, but we have made progress. Not all of the people in those two categories will agree with everything or disagree, but their voices and their social position has changed and that's what I look forward to in 20 years time. I can't predict what that'll look like, it might be something very different, but it would be that the voices of people who encounter mental health issues who become parts of the service, that that voice is raised higher and has to be taken more into account in terms of legislation, in terms of cultural issues. So when programs, media programs, discussions and whatnot, you don't think about having a discussion about them without them. That would be unthinkable now to have a discussion about women's issues, group of men and RTE discussing that, we know it would not happen. So I'm hopeful that in 20 years time, we will have made some kind of progress socially along those lines. So that's how I see it, but it's messy. All this stuff is messy. It's messy, messy. The whole world of it is contradictions, full contradictions. And that's Karen and Nanny Thompson. So maybe just trying to pull together, I think, maybe what everyone is kind of saying, you know, and I agree with everything everyone has said, I think it's that mainstreaming bits that it becomes the water we swim in. It's the culture. It's just the way we do things around here. We don't even know we're doing the recovery approach. It's just what we do. It's who we are. I see it with my kids, you know, in terms of the changes that have happened to social changes, like one of my kids is in a very diverse school. She changed schools and she's in a very, very diverse school. She doesn't even notice she's in a very diverse school. You know, when I went to that school, we were all white and Irish. She's in that school. There are less than 20 girls in her class and they're from 11 different countries. She doesn't even notice. She never even comes to that. And when I came to the Christmas play, I looked around and said, oh, this is a different than I room. You know, and I said, it's the water we swim in. It's the culture. It's just the way we do things. It becomes normal. And then we're onto a new frontier, hopefully. Yeah. There's always another hill. So guys, I just want to thank you again for coming. For everyone at home, we're incredibly lucky to have the people we have in the room. So thank you to Pat Agnes, Karen and Donal. Thank you for listening to the Irish Journal of Psychological Medicine podcast. The Irish Journal of Psychological Medicine is the official podcast of the College of Psychiatrist of Ireland. You can read more about the journal on Twitter and Blue Sky at Irish J Psych. Thank you so much and we'll see you next time.