The Creation of a Conceptual Alternative to the DSM: An Interview with Dr. Lucy Johnstone

Editor’s note: This report originally appeared on Mad in America.

Last year, Lucy Johnstone, Mary Boyle and their colleagues in the UK launched the Power Threat Meaning Framework (PTMF), a set of ideas that represented a sharp departure from the biomedical conceptions that animate the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM). This framework shifts the notion of “What is wrong with you?” in the DSM to “What has happened to you?” and by doing so rejects medical process of diagnosing “disorders” in favor of a narrative response that tells of contexts, power dynamics, and systems.

At a time when the Global Mental Health Movement is exporting the Western biomedical model around the world, Johnstone, Boyle and the PTMF project team, which includes those who identify as service users/survivors, are seeking to promote a radically different way of understanding distress. Responses to the PTMF have ranged the gamut from criticism to gratitude.

Johnstone, a consultant clinical psychologist who has experience working in adult mental health settings for many years, believes that the current mental health system has failed, and we are now in the process of witnessing the crumbling of the medical paradigm of emotional distress. She believes we need an approach based on fundamentally different principles. The PTMF, which draws on a wide range of evidence and examples of existing alternatives, is an attempt to outline what that might look like. The PTMF project team hopes that it can be a contribution to the much needed revolution.

Johnstone described the PTMF in an earlier MIA interview. In this interview, 18 months after the launch, she reflects on the reaction to the PTMF, and the impact it has had so far. How are the ideas being used? Does it stand a chance of becoming more widely adopted? She also describes how her own life experiences have influenced her work.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Zenobia Morrill: To begin, why do you believe we need an alternative diagnostic framework? In other words, what’s the problem with the DSM?

Lucy Johnstone: We don’t think we need a new diagnostic framework, we think we need a new framework that is nondiagnostic. So that’s what we attempted to provide. But you and anyone who visits Mad in America will be well aware, as many other people are, that the current diagnostic framework is facing a lot of problems.

Of course, experiences of distress are very real. People really do feel suicidal and desperate and anxious and hopeless and hear hostile voices and have mood swings and so on, but it’s never been demonstrated that these very real experiences are best understood as medical illnesses that need diagnosing. There is also a great deal of evidence that people are ultimately responding to events in their lives when they go through these very difficult experiences.

We clearly need something different (from the DSM). Now, of course, people have varying ideas about what that different system should look like; whether it should be in some sense a better, more effective diagnostic framework, or whether it should be something completely different. But it’s obvious I think to everybody on every side of the debate that the current diagnostic system is not working. We do need at least something different and it’s our view that the big difference needs to be a fundamental shift away from the assumption that these difficulties and these forms of distress are best understood as medical illnesses.

Morrill: How would you respond to people who say that the DSM or ICD are helpful in that they group together people with like symptoms for research purposes, provide a common language for practitioners, or even helpful for reimbursement purposes and categorizing different treatments for people with similar symptoms?

Johnstone: Legitimate diagnosis, medical diagnosis, does do those things. That’s why we have it, so we can group symptoms together and suggest the best treatments or interventions. I would actually challenge that language, first of all. The language of “symptoms” and “illnesses” and “treatments” all implies the same unproven model. Actually, I think it’d be very hard to maintain that psychiatric diagnoses perform any of the functions that diagnosis does in what I would call legitimate branches of medicine.

We do need ways of grouping different kinds of experiences together so that we can think about the best way forward and all the rest of it, but the diagnostic system doesn’t do that. We are claiming that we’ve come up with something that does that better. Equally, it’s true that in the current system, diagnosis is needed for some practical purposes, like access to welfare and benefits, and for the foreseeable future, probably will be. We want to claim that we found that there are more effective ways of doing that that don’t require you to subscribe to a label, which is actually not valid and is experienced by many people as very damaging.

Morrill: Do you feel that the DSM has helped form societal and professional thinking about psychiatric difficulties in a way that has been harmful?

Johnstone: The DSM and its European equivalent, the ICD, have certainly had a profound effect on forming societal and professional thinking, and it’s chicken and egg isn’t it? It’s arisen out of a certain way of thinking about things. It’s had a profound effect. I would certainly argue, as would many other people, that the overall effect has been very damaging.

I think it’s almost impossible to overestimate its influence and to grasp how deeply it’s infiltrated in all sorts of areas of our lives. It’s not just services, but the legal system, the welfare system, and it’s to the extent that people are actually coming along having diagnosed  themselves. This language is everywhere–it’s in campaigns, like anti-stigma campaigns, it’s on Google, it’s in the media, it’s in people’s training programs. It’s become something that Mary Boyle, in her useful phrase, calls “the DSM mindset.”

There’s an awful lot of evidence, and you will know this of course, but people like Robert Whitaker have shown, I think quite conclusively, that this kind of approach coupled with the psychiatric drugs that it invites, does not, over the long term, on average, help people or make them better. In fact, levels of disability across countries rise in tandem. The fundamental model clearly isn’t working, and we clearly need something different.

Morrill: You’re noting that this system has done harm, it lacks validity, and it’s not working. And, that the Power Threat Meaning framework (PTMF) offers something else. What are the core aims of the PTMF?

Johnstone: The Power Threat Meaning Framework is a ridiculously, ludicrously ambitious attempt—an ongoing attempt, not a complete answer—that we hope will start to outline a conceptual alternative to the diagnostic model of distress.

We already have a number of different ways of approaching distress, that aren’t diagnostically based, and we’ve drawn from a lot of those. An awful lot of what is in the framework isn’t new. We chose the word “framework” deliberately. It’s kind of an umbrella that supports, centers, and gives some more evidence and credibility and support for the many nondiagnostic ways of working that already exist, as well as suggesting new ways forward.

We’re intending it as a major step away from not just a particular use of language, a particular use of labels, but a whole way of thinking—getting away from the whole DSM mindset. That’s partly why it had to be so long, dense, and detailed because we didn’t really want just to tweak the existing system. We didn’t just want to say, “Well, here’s an extra way of doing things that might be helpful.” We wanted to go beyond that, which required us to really dig quite deeply into the philosophical and conceptual principles of the DSM approach and do a massive overview of all the relevant research.

The aim is to move, in simple terms, away from the “What is wrong with you?” towards the “What has happened to you?” question. To put it at its briefest, we’re evidencing, we hope, the idea that peoples’ distress is understandable in context, but we wanted to think about context in its broadest form. One of the things we wanted to do was to really make very clear the link between personal distress and social context, social inequality, and social injustices. In other words, to put power on the map. Power is not only missing from psychiatric thinking, but it’s also missing from a lot of psychological thinking, and it’s missing from much psychotherapeutic thinking.

Along with that, we wanted to have a framework that supports people to help tell their stories, narratives of all sorts. So the simplest answer to “What do you do instead of diagnosis?” is “you listen to people’s stories.” This is a framework, we hope, that both validates the idea that narratives are an alternative to diagnosis and supports the construction or co-construction of particular narratives and looks at patterns in those narratives.

Finally, the third important thing to say is that the framework applies to all of us. We really wanted to get away from this whole idea that there’s a group of people who are somehow mentally ill or different in some fundamental way. We’re all subject to the negative influence of power. We all suffer distress at times. The framework is actually about all of us.

One of the key things about the framework is actually giving people the knowledge, the information, to make up their own minds about how they want to describe their own experience. That’s a really important form of restoring people’s power: the ability to make their own meanings. Ultimately, to create new narratives that make more sense.

Biomedical model psychiatry is a prime example of the use of ideological power because it is a worldview that does not have any evidence to support it, that never has had evidence to support it, that clearly operates in the interests of people who are already quite powerful—professionals, drug companies, and so on—clearly operates to the disadvantage of people who are already less powerful, or else they probably wouldn’t be in services in the first place. It clearly operates by imposing a form of meaning on people, which goes along the lines of: you have a mental illness of X, Y, or Z sort. If you start to challenge that, you will quickly find out that the power lies elsewhere. You’re not allowed to challenge it. All sorts of consequences may follow from challenging it.

Morrill: How has your personal and professional background influenced your participation in and construction of the PTMF?

Johnstone: I’ve always believed that madness has meaning, but also I think probably all of us in the project group would say the same thing. In a way, the framework is the culmination of our life experience both personally and professionally. We, all of us, brought a range of experience to that task which covered research, clinical practice, training, and personal experience. Together, I think it made a rich mix whereby all of us, those aspects of our experiences, were able to feed it into the production of the document.

If I think about myself, I would certainly say it’s not an accident I went into mental health work and developed the views that I do have. I’m an unremarkable person. I come from an ordinary UK middle class background, my parents are both school teachers, I have a brother and a sister, I went to a decent school. . . I mean, in one sense nothing awful happened to me. In another sense, there were a number of ways that I was always very unhappy as a child, as a teenager, as a young woman, and I spent a lot of time thinking about that. It’s clear to me that there were reasons for that.

I come from a generation that was still quite influenced by the so-called antipsychiatry movement. When I started training as a psychologist, there were still people around, some of whom were very inspiring to me, who had worked with Laing, for example. Those ideas were still around. It all fitted for me. The personal thread of experiences, that distress or madness has meaning, very much chimed with some of the currents that are still around in the culture. I’ve always believed that, I’ve always followed that thread through.

Morrill: What was the intellectual process like of constructing the PTMF?

Johnstone: In one sense, the starting point is the position statement that the Division of Clinical Psychology issued in May 2013 at exactly the same time as DSM-5 was published, and I was  part of that position statement, as were a couple of other people who were in the group. In essence, it was a whole professional body calling for the end of the disease model of distress, which is quite a brave and challenging thing to do.

One of the recommendations was that if we’re going to call for this, then we need to be able to work out what an alternative would look like and join with survivors and other stakeholders to see what that might look like.

It kind of evolved from that, without any plan. Mary and I were the project leads. I’ve never been involved in anything as ambitious as that before. I think it helps that the core group, we’ve all known each other for years, if not decades. We all knew where we were coming from and I don’t think any other group would have been able to take on such a task nearly so easily. There was a large degree of shared trust and friendship and shared ideas and understandings.

We started to meet regularly. We started to firm up some of our ideas. We started to assign different aspects of the document to different people to take a lead on it. We started to draw in other members and people to give advice and consultation. We had set up an advisory group of service users and carers. About three years down the line, Mary and I realized that unless we devoted some really solid time for this, it’s never going to happen. We essentially spent two years unpaid in front of our computers, each of us, putting it together, and then it came out.

It was very stressful at times. I think it’s fair to say that for about two years I think I felt, and I know Mary felt, and I think probably the others felt, that we’re kind of thinking, “What the hell have we done here? It feels like we’re wandering in an intellectual wilderness.” Firmly as we believed that the existing model is not fit for this purpose, it’s actually a much bigger task to put together something that is going to hold together and something different to put your money where your mouth is, as we say in the UK. So it was very stressful and difficult at times, but we’ve emerged at the other end with an imperfect, evolving document, but one I think that we overall feel very proud of.

Morrill: What do you believe the PTMF has accomplished? How do you wish it to be used, and how would it change societal and professional thinking if it were to be adopted?

Johnstone: We had no idea how it was going to develop and it’s still an evolving thing. I don’t know how far it’s going to go or what it’s going to look like. If it is really fully implemented, then the landscape would look so different. I think it is actually quite hard to conceptualize because you’re bringing up some really fundamental questions, like, “Do we need a mental health system?” Not all cultures and countries have had, or do have, a mental health system. Do we even need one? That’s a very big question.

At a more immediate level, we deliberately haven’t set out specific answers about, “How might I work differently with this person?” or “How might services look differently?” because we wanted this to be a conceptual resource, a set of ideas. It’s really up to people themselves to think about how they might put it into practice. We want to be collaborating, letting it go so other people can do what seems helpful because they will be the experts in their setting and their position. The second stage of the project is for that to happen as much as it happens. We hope to get feedback on that.

We hope to learn from how people are using it, what’s worked, what hasn’t worked, and so on. I guess what we mainly wanted to accomplish is some sense of support for people who do want to think and do things differently or see their lives differently–some ideas for them to put into practice to take them further down that road. That is how it seems to be working out. That’s great. It’s an ongoing journey, so we’ll see.

Morrill: How do the core aims of the PTMF fit in or clash with the movement to globalize mental health?

Johnstone:  One of the biggest scandals of our age, I think, is not only that the diagnostic model is comprehensively failing in the largely Western industrialized countries within which it was developed, but it is that at the same time— and this may not be a coincidence—it is being exported across the world.

This is generally seen to be a good thing and I’m sure people are well motivated, well, most of them, in doing it—not quite so sure about the drug companies—but I think we’re too close to see what a scandal this is. It reminds me quite a lot of how a hundred years ago, 80 years ago, this would have been missionaries exporting Christianity, dutifully and well-motivated, but actually this is in some sense similar, but I would say more damaging. It’s a form of colonization and it’s an insidious one because it’s about taking over people’s minds and actually persuading people that this is what they want, these wonderful, new Western scientific ways of treating so-called illnesses. One of the strong messages of the framework, we hope, is a message of respect for the many, many different culturally specific and culturally appropriate ways of understanding, expressing, and treating distress across the globe.

This is very different from the DSM perspective because the DSM perspective has a great deal of trouble in trying to accommodate culturally specific expressions of distress. Because if these are medical illnesses, they would look roughly the same, wouldn’t they? Diabetes, a broken leg, malaria, or whatever looks roughly the same wherever it happens. Expressions of distress could look extremely different. They can look extremely different across time as well as cross culturally. In the Power Threat Meaning Framework terms, that absolutely makes sense because one of our core arguments is that instead of understanding distress through biological patterns, patterns that are borrowed from the kinds of patterns that we see when things go wrong in our bodies, we need to understand distress through patterns that are organized by meaning. They’re organized by meaning, not by biology, which is a big conceptual leap, one of the fundamental conceptual leaps I think we made.We need to be thinking about how those patterns are based on or organized by social and cultural meanings, not by biology and something that’s gone wrong with our bodies.

As soon as you get your head around that, you realize, from a framework point of view, of course, expressions and experiences of distress are going to look very different cross-culturally because they’re different cultures with different meanings, norms, and assumptions. That sets the scene for saying, well fantastic. If that works, that’s great. Actually, to go further than that and say there may be things we can learn from non-Western non industrialized cultures rather than the reverse “We’re going to impose our ‘modern’ views.”

Morrill: What criticisms have you received and how has psychiatry responded to the PTMF?

Johnstone: Well, psychiatrists vary. It’s been kind of interesting because there is a group of psychiatrists in the UK called the Critical Psychiatry Network who are very outspoken critics of the way psychiatry works. I was invited to speak at their annual conference this year. They were very supportive, very interested, very welcoming. Other psychiatrists, of course, have viewed it rather differently and, as expected, have, well, I like to think that the usual line of defense goes ignore, attack, assimilate.

Any approach that challenges the status quo you tend to see: ignore, let’s pretend no one has said this, attack, let’s tear this apart, assimilate—in some ways, the most dangerous stage, because it’s like “We’ll take some bits and pieces of this, but we’ll ignore the fundamental message” and the whole road show continues much as before. We’ll have psychiatry as before, but we’ll have a hearing voices group for half an hour once a week on the ward, where we give people a few coping strategies and otherwise, everything will go on as before. Although, interestingly, we seem to have gone straight to the attack phase with the framework. I don’t know what that means, but I do want to say that it’s really much bigger than, as it’s sometimes unhelpfully phrased, psychiatry versus psychology. This is about a way of thinking that is deeply embedded in all of our minds, in every professional of any background.

I think it’s important to listen to everything that comes back at you—but some of it strikes me as quite odd. For example, one of the big criticisms we’ve got is that “Your framework isn’t evidenced.” Well, the diagnostic model isn’t evidenced, that’s for sure. We have actually got 70 pages of references and a massive overview of the evidence. Some of the less constructive criticisms are saying “You’re antipsychiatry,” which, in the UK, is a kind of all-purpose way of dismissing you.

The system isn’t going to change easily, and by the system, I mean all the professionals who are involved in it. But, as I said, that’s not mainly where we’re aiming. I think the time has come to, as much as we can, step aside from all that stuff and promote good practice and different practice where we can and where there are people willing to listen and try out new things.

Morrill: There has been a critique of service user and survivor involvement in the PTMF project. Can you discuss those critiques as well as your responses to them?

Johnstone: We’ve had some really, really heartwarming feedback from particular people who said, “I see my difficulties in a very different way, I don’t have to feel so different or guilty or ashamed,” and so on. And we’ve had some very fair criticism, particularly that it’s not very easy to read it in most of its current form. I think that’s fair. I think we want to think about more accessible forms and we are doing that.

There are people who say, “It doesn’t really seem to fit or describe me.” That’s absolutely fine. And people who are happy with the diagnostic model that does fit and suit them, and that’s absolutely fine too because it is really not our aim, nor is it within our power, to go imposing this framework on people. It’s for people to pick up if they want.

We’ve had some quite angry criticisms that I think are based on misunderstandings and I can’t blame anyone for not reading through the whole document—it is long—but the risk is you pick up ideas that aren’t actually what we said. One of the regular comments we get is, “I need my diagnosis for welfare and service access, so you’re going to take away my diagnosis.” Also, “The system is going to leap on this and say ‘oh these people aren’t ill, we don’t need to give them support,’” and so on. Actually, we’ve very clearly said, at a number of points in the document, the first priority must be to protect people’s access to benefits and services. Of course, it must be. This is a discussion document. It’s not a plan for services or benefits offices, it’s a way of discussing ideas.

I would still maintain that the current benefits system is not working now and the same people who are, understandably, anxious about “Will this make life even more difficult?” I think would be the first to admit that the system is appalling in the UK, not just in the UK. Diagnosis is very often used to exclude as well as include people, and most people are really struggling and they have to go through a humiliating process of describing themselves on their worst day and accepting a label that they may not be happy with in order to have the bare minimum to live. This system really does need changing. It needs changing in a way that doesn’t put people more at risk. But I think we have to have these discussions.

There are other people who I think have understood it or misunderstood it as saying, “We’re going to go around the country tearing people’s diagnoses off people and saying, ‘you’re not allowed to use this language.’” Again, we’ve clearly said people have to have the right to describe their experiences in a way that makes the most sense to them, but people are very rarely offered that choice. They are very rarely offered that choice.

Morrill: Where do we go from here? The world of psychiatry still seems to be mostly governed by the DSM. Does the PTMF feel like a lost cause if that’s the case?

Johnstone: It doesn’t feel like a lost cause because my view is that we are actually witnessing the crumbling of an entire paradigm. With or without the framework, the days of the diagnostic paradigm are numbered. If you read that stuff, the Thomas Kuhn stuff, the “Structure of Scientific Revolutions,” we’re seeing all the signs of the crumbling of a paradigm. We’re seeing massive contradictions within the paradigm, desperate attempts to shore it up, a mountain of evidence that is not correct, or that other ways are a better way forward.

One of the things that Thomas Kuhn says is that all these things can happen and yet, the paradigm won’t fundamentally shift unless or until there’s somewhere else to jump. Well, I think there are actually a number of places to jump, and I think the trauma-informed perspective, which we’ve drawn on to quite a large extent in the framework, is one of them, but I think the framework itself, I hope, can also be seen as additional support for that kind of approach, and as a place to jump to in itself. If it becomes a small part of that inevitable process, and I do think it’s inevitable, then we will be pleased and proud.

Morrill: That’s heartening to hear.

Johnstone: You can see I’m a total optimist.

Morrill: Anything you’d like to add?

Johnstone: I don’t think so. I’d encourage people to read the links you’re going to put at the bottom to find out more. Make of it what you will.

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More about the PTMF

The British Psychological Society: Introducing the Power Threat Meaning Framework

Lucy Johnstone discussing the primary features of PTMF

Presenting the PTMF in Australia

Presenting the PTMF in New Zealand