Interview on mental health and lived experience

raindrops fall here and just like the guys feed, nothing seems to fit. Yeah, Hello. So good to be here making our first recording our of our new podcast exploring mental health or things related to, um the experiences of being stuck in the system, working with people with diagnoses and our experiences of your day diversity. So my name is Matt Johnson, and I'm with Paul Baker, and we are working together as part of charm, Which what does Charleston football? Oh, no

You got me communities for holistic, accessible, rights based mental health. And we apologise. But we like the word charm gave you the concept of being charming, but also the possibility of a charm offensive which we also like

So yeah, perfect. So and so charm. Just just to be clear is a is focused on advocating for, um, for rights in mental health and is also advocating for how the system could operate in a different way and trying to support people who, um, who are stuck in the mental health system

In fact, give us a little bit of a low down on some of the work but charms currently up to and I think that's right. Because that's partly why raindrops are falling on my head because they're not always soft. Summer and spring rain drops

Sometimes they're kind of like in your face, Manchester Rain would kind of slap ship and then make sure, you know, I think you paid attention. Yeah, so I mean, reform, child, because, I mean, I think the key word in all of those words that make up the word charm is community. And we actually think mental health belongs to the community, is all about community and needs to be addressed through community

So that's our kind of take on it. And I think what we we are challenging is what we see as the sort of rather, um, I don't know, difficult challenging. And the word is used often coercive mental health practises that lead from most mental health services for people who are in crisis, um, and need help takes place within hospitals and institutions

And for us, that's a problem. Yeah. Yeah

So, uh, and and in terms of the work that charms currently doing, um, you've been holding a series of community based meetings to get people involved, people who are carers people who are experience have direct experiences themselves of being stuck in the mental health system and people who are exploring alternative ways of supporting people around mental health, including peer support. Open dialogue approach is, you know, and I think it's what's really fascinating. I find with attending charm meetings is that, uh, there's a real diversity of people

But in the space of being at a charm meeting, it doesn't feel like people are inhibited by the problems. When people come in, everybody is their own person. You don't feel like there's a group of people who feel victims predominate

There's a lot of people who feel angry about the way that they've been treated or people that they care about are being treated. But or you discover, I discovered from attending charm meetings is that mental health can affect many people in many different ways, and often it is the systematic structures and inhibitors which are actually causing people the biggest problems. Whereas when people are in a safe space, particularly among other people who share similar experiences, and they have many of the barriers taken away that they can just talk, is it just people right Yeah

I mean, it is extraordinary. I mean, you both you and I've been to both kinds of meetings and me that is run by, uh, mental services and commissioners and those run by community organisations. And there is something special about that

I think there's two kind of unique features about charm, and I think that's why it's attracting attention early in Manchester. But throughout the country and internationally is that it's actually brought together people who are experts of their own experience. And I would, including that people who you know, uh, services regard as having serious mental illnesses

Um, and also family members and workers and activists together in the same space. And we've worked hard to to get to know each other and to understand each other and to work from a position of trust and understanding. And that's given us a new kind of take on the way we understand mental health issues

Uh, which we believe, uh is very useful to services. Yet so far we found very difficult to get into dialogue with them because they suspect that we're not really the kind of organisation that they want to talk to were complicated however, that hasn't stopped us. But it is

In fact, I think it's probably, if anything else, it's It's made us even more determined. So I think the difference back back charm is is that we don't want to be a service provider. We see ourselves as a friendly critic and sometimes the word friendly right there with the small F than the BF

But we do. We do genuinely want to seek solutions, and we have we you know, we have big ideas about that which is moving psychiatry and mental health services away from a predominantly by a medical model into something which is about understanding that, generally speaking, I think very often the important question in mental health and psychiatry isn't what's wrong with you. But what happened to you? What's happening to you and what can we change about that? And that addresses oppression, marginalisation near our divergence, and it's a completely different way of understanding how we address people's needs when they are in crisis and find it difficult to communicate

Their needs were looking for something very different, and I think what's kind of focused everybody's attention is what's occurred at Eden Field, the regional Secure Unit Impress, which was the responsibility of the main Manchester Mental Health Service. And we know the kind of things that have occurred occurred there that we saw in the BBC documentary need to be picked up by the community. We get the kind of mental health service we deserve, and it's up to us to make that change

So unless there's community, community involvement, scrutiny, you know whether or not we're asking them difficult questions, they may. They may. They may not like us doing it, but I think they should be grateful they've got us because we are actually adding something to the mix which we think will lead to better services in the future

Now that all makes a lot of sense. I'm just gonna ask you, despite because you got to understand that this is our first attempt of this. You just move your microphone slightly closer to you

I'm going to turn your volume down quickly. There we go. Perfect

So a bit low. Yeah. I mean, I mean, not that your voice doesn't carry any way, Paul, like, there's no doubt anyone here is not going to have heard you, but I'm just including that, You know, we're such a little box

Maybe ask you a couple of questions as well? Absolutely. Well, I mean, that's the thing, because the objective of this podcast is not about anything being a one way. In fact, this is about open dialogue, isn't it? It's about how do we, um, take out some of those power systems that are in place in the mental health system? Uh, you know, a lot of people experience being done to, uh, and find themselves

In fact, I find that's the biggest thing that I hear about from people who are in the mental health system. And we're talking about the issues that Eden Field and, uh, what we experience and what we hear from people who have that experience of being in mental health hospitals and because, as we understand, most people end up in mental health hospitals having been put under section, which is where you have your right to make judgments for yourself taken away from you. And so you're put into a hospital often against your will, certainly against your ability to make a decision

And there is a power system is put on top of you, which says, uh, you don't have the capacity in your own mind to make decisions and therefore decisions will be made for you. And unfortunately, that removal of of, uh, decision making takes away people's freedom and rights. And it's very easy in that kind of system to create a power structure which can lead to abuse, as as all power systems can

You know, this is just something which we know, um, happens time and time again. If you stop someone be able to make a decision for themselves, then the people who can make decisions have power over them. Um, and you know, the The idea is that the people who then are making decisions for you will be experts experts in what you need

But in what we saw in need and field film was that many of the people who are coming in and working in hospitals aren't experts. They are people who, uh, maybe on I think the person who was filming it and said that they had sort of like a week's training and, you know, sort of like had no, you know, coming with no experience and then all of a sudden you got someone without any expertise being able to make decisions and exert control, including the use of restraint, including the use of all kinds of mechanisms that are changing the records. Being able to present and these kinds of power structures which can be abused can lead to horrendous effects for people in the hospital so that some of the stuff around it

But so and that's why we're trying to take out the power structures in this as well. And then we can ask any questions. So there we go like what you did there

So part of your memory kicked in? Yeah. I mean, absolutely. And you just really well laid out Well, the kind of agendas that are concerned to charm

I mean, not only, though we also we want to be able to identify the difficulties, problems and challenges facing services. But we also want to look to what my services look like. A different that don't place so much emphasis on control locked doors, holding people down physically, restraining them, secluding them in especially rooms with Oh, my God

Yeah. Sorry. Yeah

I mean the whole question of medication and you know, it's you know, you know, people sometimes think that charm is a nuisance and that we're, you know, we're picking up on issues that really, you know, we should leave to professionals. But I think the meeting field shoulders what the problem is there. If you are a vulnerable person and you are under a mental health detention under the Mental Health Act, you're very vulnerable

And if there isn't community scrutiny of those spaces and people are totally isolated and only surrounded by professionals, things can potentially go wrong. And what we saw in Eden Field was this kind of service culture that clearly wasn't just about the individual difficulties. You know, the individual assaults and abuses that we saw, but something deep within that space

And I think if and I think we saw that through the eyes of the reporter from the BBC, if you're somebody who's not used to that kind of environment, that kind of institution, you are genuinely shocked by what you see and what you hear and what you experience and what we want to say is because we do have workers, many workers involved in charm. We see this as symptomatic of a very dysfunctional service and people are placed in these difficult situations without training, without proper supervision and support. And also this thing about having to be very defensive because everything is about risk

Everything is about. Let's minimise the risks rather than think about the whole life of the person that they're working with. It's difficult stuff, but it's got to be acknowledged

We're going to change anything that's got to be openness and candour about how we can change. Risks are a very interesting concept in this as well, because I think that one of the things that both you and I may have observed, both both Paul and I were I have worked in and around and with people in the mental health system. And we spend a lot of time talking to people who are, um, patients or, you know, whatever word is is applied for people who are supposed to be accessing, um, services within within the system

Um, but one of the things which, when it comes to risk, is whose risk because whose risk are we talking about? And I suppose when we were saying before, about section sections for people, it's kind of like. Is this about a risk to Are you a risk to yourself? Are you a risk to the wider community? But often what we have found when working with services and systems. And I hate to say it, but this is, um uh an observation of mine, um is that often it is about the risk to the institution

It's about sort of like we don't want to be seen to be doing something wrong And it is a risk if we are, for example, you know, changing the records. We need to demonstrate that we are making the right choices. And so rather than but sometimes that can be difficult

We understand that. You know, it's organisation. It's a complex thing to be trying to manage

But my observation I'm not going to name organisations in this because I think it's an I think it's a system wide problem. Um, and it comes down to funding. It comes down to having to, you know, sort of demonstrate, um, the delivery bubbles of whoever you are accountable to and the risk is being seen to do something wrong

And often we experience that rather than prioritising the risk to the individual or the genuine, wider risk to the public. Because, I mean, I think we both would say that most people who we know who are in the system are very. It's very rare that I've experienced people who are in the system who are of this great, serious risk to other people around them

That doesn't mean that you know, nobody nobody is, but fundamentally often that risk is overplayed and it seems to be rooted in in the risk to the organisations, the institutions and systems. And then there's a lot of evidence to to support, uh, view, for instance, you know, the last 10 years in particular, we've seen a massive move towards using the Mental Health Act to detain people involuntarily. They call it used to be able to go into hospital voluntarily, and you could sort of come and leave

And it was it was, you know, doors weren't locked. There was maybe much more freedom. But that has changed

Now it's almost impossible to get into a psychiatric hospital bed unless you are there under a compulsory compulsory order. It's just about the level of need. It's about the availability of beds, etcetera etcetera

But it's also about the lack of choice. I mean, a lot of people. It's not necessarily appropriate for them to go into an acute inpatient hospital because for a start, there not very well run places

I mean, I've heard them described as chaotic. I've heard them described as not a therapeutic milieu, which is a challenging French word, which I think means space but anyway, but people, you know, when you if you have ever been anywhere near a psychiatric ward, if you've been in one yourself or you've got to visit one as a worker or it's a family member, you probably noticed that there, you know, there seems to be very few stuff about. This is the first question

I mean, we know this is an issue because greater monumental trust just had a report from something called the secrecy. The Commission for Quality something quality, cash quality commission. Is that right? You see, there's a lot of love and Akron Well, I I just hit me with the acronym

We might have to have a thing at the end about CPC means, but anyway, this this this body. Just last week, clothes just went into a hospital in Salford, which is one of the great monumental trust services. And they declared that the service is inadequate because essentially weren't enough staff just where they weren't nurses

Their support work is pretty much what we saw an even field as well. So we know that one of the first things is Is that basically it's very hard to get people to want to work in these environments because they're pretty. They're real challenge in the struggle

So what we're seeing is is a massive sort of particularly Manchester people leaving the service to go and work in something else because it's so difficult. What we're looking for is a change in the culture thinking and practise, and we've got to look at choice. There must be loads of other ways that we can keep people safe when they're in crisis

It doesn't always have to be about a hospital bed. It can be about something called a host family scheme, where you can go and stay with somebody from your culture who will look after you and the services support you in that person's home. We've we've seen it

Examples of peer led crisis houses but we need a mix and one of the challenges and this is a challenge to Manchester. It's a greater Manchester to the Manchester City Council and to the authority. Why not use Central Manchester, which has not got any kind of acute mental health service, because the only existing within showing up in crumbs all, why not try something different in central Manchester? For a very diverse community, which includes wars, which amongst the poorest in the country let's develop a social determinant model of mental health, which is about partnership and working through community? Wouldn't that be wonderful? Well, I love your dreams

It's very aspirational. And But, you know, these things are possible. I mean, and you know, another way is possible

And I think often within the sectors that we work and so I mean just to give give a scope of why we're recording this now. We've been working together on a project around community reporting, talking about multiple disadvantages, which is the forward thinking concept that people aren't just one set of negative experiences that people experiencing homelessness or substance use or stuck in the criminal justice system or experiencing domestic violence or neuro diversity or mental health. That, actually at the centre of all of these conditions or situations, is a person

And usually these experiences aren't experienced in isolation. And what basically this language is starting to be used now, predominantly coming out of the homelessness sector. The fact that we have a sector which is devoted to homelessness, which is completely separate from housing, is a separate issue

Um, but, you know, identifying that all of these things into play into each other and one of the this language of multiple disadvantages also comes out of a space where people are talking a lot of them, so much jargon and in all of these sectors. But people are talking a lot about system change. How do we change the system now? Sometimes when I'm feeling particularly pessimistic and which you'll find is quite often, um, I I often feel like this word has been slightly co opted by the system

The system talks about system change, and actually what it means is just another round of funding. It's just another way of spending its money, making itself look like it's doing what it's supposed to be done. Another one of our favourite words is co production, which I'm sure will be touching on in a lot more detail through the course of our Pakistan series

Um, so But when we talk about system change, what Paul's just described, the idea of trying to do something that is actually quite significantly different but could actually change the system. These things can be tangible if the resources put into them and the resources thought about in the right places and coproduction does what it means where people listen to each other and actually involve each other in suggesting ideas rather than presenting a list of, um, this is what we're gonna do, um, and then inviting people in for a little bit of a consultation and pretending that they've actually thought about things because unfortunately, I think that just a slight truism in life and society, it's very difficult for a system to change itself from within. You know, same with culture changes, how you need to have ideas coming from the outside to be able to change how that system operates

But there's a reluctance, often again because it comes down to that risk factor of do we dare do things differently and And what does it mean for us? Does it then suggest that we're accepting that we've been doing things wrong and it comes about the risk going up the chain to the people who are making the decisions at the top, and they don't want to feel disempowered or be seen to be failing because then it raises questions about Well, why are you getting paid so much money? But yeah, I mean again, I just want to support everything you said just then and add to that. One of the key things, I think is that another word that's bandied around as well and there's a lot of rhetoric and often the rhetoric doesn't reflect. The reality was often a gap between what they say they're doing, like we like peer support or peer workers

And when you look at what they actually do, it seems to be very much top down, led by sort of NHS culture, which I think it's just rebranding often low paid, low paid job roles within the system. But there's a bigger there's a bigger issue here, another horrible what may be another paradigm change. This is where we think we're at the moment there is a difference

There's a change going on the moment previously, and I think probably still operates. Mostly, it's that the understanding is that mental health can affect anybody pretty much equally. It can be fairly random

You know who gets schizophrenia, who experiences bipolar, who experiences a serious so called mental illnesses which may lead you into crisis. Bipolar, borderline personality disorder. There's tonnes

I mean, we could name loads and loads of schizo effective disorder. Uh, you know, there's there's a there's a there's quite a lot of diagnosis now The difficulty is, Is that in previously? I mean, when you look at sort of anti stigma campaigns, they call it was a bit worried about anti discrimination campaigns because stigma. Uh, it's a funny word

Religious, you know. But the point is, is that, um it doesn't It doesn't work like that. There is a big what we call a so socioeconomic bias

People from the most marginalised communities swans are struggling economically and socially are are much more likely to be in the service than those who have, You know, better incomes, more stable lives, better opportunities. So we have to, and we know this address. This this disadvantage and this takes us right back to the theme of, uh, the thing

It's about multiple people or multiple disadvantaged socially, because the marginal areas, because they regarded their oppressor as a group, are much more likely to have crisis in their lives, which will require support from mental health services. Have difficulty. Is there mental health services do not serve that group? Well, I mean those groups, because it's against multifaceted

But the fact is, and we know this mental health services currently can be regarded as racist because the outcomes for black people in particular, are that they will be much more likely to be overmedicated, much more likely to be brought into the service, uh, by the police. And there's so many indicators to show is that somewhere, somehow the assumptions being made about why people might need a service miss some significant and important issues which are addressing those individuals, namely amount of adversity and amount of aggression they might be experiencing in the community, which leads to you know what they call weathering effect on your on your on your on, your health generally, and on your on that impacts and can lead to, you know, people going into crisis. Uh, the other thing, of course, is is that people from communities which have experienced depression and marginalisation they don't trust services understandably, so the services need to reach out, and some of that work is being done

I recognise that. But we need to kind of like at the moment I think we're operating this system, which is kind of like a patchwork quilt of different perspectives and understandings of what's going on. So if you're in the community, might get that kind of way of thinking that I'm talking about

But when you go into acute psychiatry, they're going to lean on the medication and the diagnosis. So you know, we got a problem. I think everybody's got a problem about how we're going to move forward 20th century mental health system to be relevant to a multicultural diversity like Manchester and make sense for the people who live here

Yeah, absolutely. I mean, and I think one of the biggest things, and amongst all of this is, is how do you a empower people be? Give people choice, meaningful choice to make decisions for themselves and and understand that sort of like there's questions that people you know in certain situations, like under section that that choice is being removed. But how do you at every stage, How do you actually make it another classic word of the person centred? How do you actually put that person at the centre of the care which they are receiving and not being, um, stuck in a system where decisions are being made? Because that's what the system does and you know and and and a big thing is, is hugely around medication

And I also, you know, there's no doubt that I know plenty of people who will turn around to me and say, Well, my medication actually is what keeps me well and and and And that's if that's how you feel. And if that is the outcome for you and that's really important, we're not trying to take away people's right to what makes them feel well, but also enabling people to have some kind of saying when that isn't working for them. Because, you know, once you start in a case of medication, often you find yourself being put from one

Um, you know, you've been from one prescription to the next prescription, and they're all doing slightly different thing. And often this relates to how your diagnosis is, then changing. It's kind of like, Oh, well, you know, as if this is just a change and these are modern chemicals, people don't really, You know, there's not a huge amount of knowledge on there's a knowledge of the effect, but I mean, my understanding around medicine had always been, You know, you take a medicine often with the intention that this is going to make me feel could make me better

You know, like if if I take penicillin, the intention is that it's going to make me well again, which never seems to quite be the intention behind mental health medication. From my limited understanding, I'm not a psychiatrist, But often what I I seem to see is that it's seems to be telling us much more about the idea of, um, Paul's gesturing at me. So I've forgotten what it is I'm saying, so we'll come back

I just This is the first time I just realised that we're nearly at the end of our 30 minute podcast. Oh, wow. I fly away

But I just wanted to just say that I think this issue of medication, we need to pick that up and also choice. And I like that and this idea of personal centre, Maybe in our next podcast we can talk more about that. One of the things I'm really thinking about is that, you know, we we charm, has spent some time getting international experts like China

Moncrief top psychiatrist. We spoke to Selene CIA from Montreal. We've talked to all the experts about medication from lived, experience, perspective, and we know that it's very nuanced

But somebody's got to be too talking about this. And because we know lots of people have problems with the medication. So let's Yeah, so we'll put that on line just just to say that this podcast could absolutely nothing about what we intended to cover

But it has got us off to a start. So thank you so much. Um, and we look forward to covering some more of these topics at a later stage, Thank you very much

And let's play it out with a bit of back Iraq, right So far here and just guys feed. Nothing seems to fit drops of falling on my head falling, so I just some talk.