Moving Mental Health Work Away From Diagnosis: Sarah Kamens and Peter Kinderman on New Open Letter

MIA’s Justin Karter interviews two leaders of the Task Force on Diagnostic Alternatives, a group of mental health professionals who have issued an open letter demanding a new look at psychiatric diagnosis.

Psychiatric diagnosis has come under increased scrutiny in recent years following the release of the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-5) in 2013.

Two organizations that played a prominent role in challenging the Bible of psychiatry prior to 2013, the British Psychological Society and the Society for Humanistic Psychology (American Psychological Association – Division 32) subsequently joined to form the Task Force for Diagnostic Alternatives (TFDA).

Today, February 12th, 2020, the TFDA released a new Open Letter regarding the reform and revision of diagnostic systems. MIA spoke with two leaders of the Task Force, Sarah Kamens, and Peter Kinderman about this effort.

Sarah Kamens is an Assistant Professor of Psychology, at the State University of New York (SUNY) College at Old Westbury and co-chair of the Task Force for Diagnostic Alternatives for the Society for Humanistic Psychology. Her research examines the intersections between extreme emotional distress and structural marginalization. More specifically, she studies the ways in which lived experiences of psychosis and trauma are entangled with social conditions in the world.

Peter Kinderman is past president of the British Psychological Society (BPS) and a Professor of Clinical Psychology at the University of Liverpool. He is also a past guest on the Mad in America podcast and the author of A Manifesto for Mental Health, Why We Need a Revolution in Mental Health Care (2019) and A Prescription for Psychiatry: Why We Need a Whole New Approach to Mental Health and Wellbeing (2013).

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

Justin Karter: Sarah, can you give our listeners a little background on what the Task Force for Diagnostic Alternatives is and why it was formed?

Sarah Kamens: The Task Force for Diagnostic Alternatives is a task force of the Society for Humanistic Psychology, Division 32 of the American Psychological Association (APA). We originally came together back in 2011 when David Elkins was the president of the society.

This was around the time of the development of DSM-5. At the time, David Elkins had read a letter that was published by the British Psychological Society (BPS) written by Peter Kinderman critiquing the proposals for the upcoming DSM-5. Dave read this and contacted Brent Dean Robbins, who was then the Secretary of Division 32, and me, because I had written a master’s thesis on the DSM controversies and had some expertise in the area. We put a team together a team to produce a letter from professionals in the United States.

We felt that if our colleagues across the pond were critiquing a diagnostic system that’s developed in this country, we should be inspired by their efforts, follow suit, and publish something from our own perspective as well. We developed an open letter, put the letter online on a petition website, and we thought, “We’ll send this out to our colleagues and we may get a few dozen endorsements from like-minded professionals.”

Then within the span of a few days, we received support from over a thousand individuals and, at the same time, institutional endorsements started coming in and we were absolutely overwhelmed by the response. It seemed that we had tapped into something; a kind of concern or discontent with the developing DSM system.

By the end of our campaign, we had endorsements from over 50 professional organizations, including 16 divisions of the APA and over 15,000 individuals, many of them mental health professionals.

After this, we really wanted to understand the kind of collective concern that we had tapped into so we started to expand our efforts.  We decided we would continue to critique the basis of the DSM systems, but also look and explore the possibility of whether or not there are alternative systems out there.

 

Justin Karter:  Peter, Sarah mentioned past letters, published prior to 2013, which contested the validity of DSM-5. How is this new open letter different?

Peter Kinderman:  First, this approach is different because of the timing and the professional context that we live in. Back in 2011, we wrote both the BPS and the Humanistic Psychology letters specifically as a response to the proposed revision to DSM-5. Both letters questioned whether the experiences that fall under the remit of mental health symptoms can accurately be considered illnesses at all. They asked, “Is this the best way to think about our mental well being?” There was a particular challenge.

Since then, obviously, the DSM-5 has been published. It hasn’t been boycotted. It hasn’t been ignored and it’s evolved into the new crazy Bible of psychiatry.

We’ve also had the proposed revision of the World Health Organization (WHO) classificatory system, ICD 10 to become ICD 11, which is in draft form. We’ve also had the development of RDoc. We’ve also had a number of people proposing alternatives to the DSM.

In talking about these issues, we realized that we were talking about the inadequacies of the crazy medical pathologizing diagnostic system and that, instead of critiquing a particular proposal, we had views on the whole nature of what it means to go about proposing diagnostic systems.

Rather than trying to write a response to each proposal, we thought we would group the whole issue of diagnostic approaches in psychiatry together and write to the leaders of the main groups involved in those efforts.

It is intriguing that you’ve got different diagnostic systems that purport to be better than each other, which, by definition, critiques the validity and utility of the other systems.  Yet, at the same time, they purport to have read-across (similarity) between the systems. So you can go to websites that tell you how an ICD 10 diagnosis reads across to DSM-4 or DSM-5 or ICD 11. It is like they’re saying, “their diagnosis is invalid, ours is better, and yet they’re the same thing,” which is kind of is nonsensical.

Bringing this all together, we decided to write a critique of how we should go about the business of searching for appropriate psychiatric diagnosis, or more properly, alternatives to diagnosis. We ask questions like:  What’s the purpose of this? Is this a diagnostics system to identify the pathologies in the population and sell drugs, or are you aiming to improve the wellbeing of the population?

Who should be leading this? Is this an exercise by psychiatrists and mental health professionals for psychiatrists and mental health professionals or is this a democratic exercise?

Are you starting by assuming that there are such things as mental illnesses and trying to examine the entrails of the slaughtered goat in order to find out which diagnostic system is best? Are you critiquing the system at all from first principles? Are you considering alternatives?

Are you considering different perspectives? Are you including sociologists, philosophers, critical psychologists into the mix? Are practitioners open to alternatives? Are you exploring psychological classifications, which, personally, I don’t think are that much better than pathological classifications, or are you considering the sorts of approaches used by social workers or social pedagogues? Are you considering phenomenological approaches? Are you considering a public health perspective rather than a pathologizing perspective?

Our open letter sets out all of these possible alternative perspectives and presents some of the principles that we think should apply to the business of looking at diagnoses.

Sarah Kamens: To add to what Peter was saying, we have all of these different alternative systems being proposed. It is a really unique time and, in some ways, it’s an exciting time because there was a period after DSM-3, where researchers and practitioners were really laboring under the DSM-3 system and very invested in its success and had strong beliefs in its success.

It was a period of what Thomas Kuhn would’ve called “normal science,” where people are doing a lot of studies trying to support that paradigm. Then this anomalous evidence started to emerge that the system wasn’t really holding up empirically by its own standards. There was all of this overlap or comorbidity between the diagnoses, fuzzy boundaries, and other types of empirical problems.

Now we’ve got of these different systems being proposed and, as Peter said, they critique each other. Then, at the same time that you have these critiques out there, there is this continuation of using the DSM system that has been widely identified as problematic for not having the types of validity and reliability that you would hope for.

We also have a situation where, paradoxically, the DSM is used in clinical and counseling settings, and we ask those accessing services to have belief in this same system that we as researchers and professionals are permitted to identify as faltering and problematic. Yet, if those with whom we work do not hold a belief in that system and their own place in it, we say that “they lack insight into their diagnosis or their ‘mental illness.’” This, to me, seems to be the great hypocrisy of the present time.

As our open letter identifies, a lot of the systems that have been proposed would not be a true paradigm shift if they’re successful. A true paradigm shift would occur if, as we propose in the letter, we somehow tie in this overwhelming evidence for social and structural factors to mental distress.

Peter Kinderman: To build on that, one of the things that happened when we came together and criticized DSM-5,  was that people responded by saying, “well, we’ve got HiTop and we’ve got RDoc and we’ve got ICD 10 and 11.” But our point in this letter is that all of them have assumptions and failings built into them.

They make assumptions of pathology, assumptions that we can make subjective judgments and define what normal is and define what abnormal is.

We wanted to take a step back and challenge all of those underlying assumptions. So if the leadership is by psychiatrists for psychiatrists, because after all the job of psychiatry is to define illnesses and then treat them, then you’re not doing your job properly.

We need to challenge that. Are you including alternative and diverse voices? Are you including the voices of people who think that those assumptions need to be challenged? I think we did a good job in 2011, but we need to do a broader job now and a more conceptual job. That’s what this letter is about.

 

Justin Karter: I want to pick up on these assumptions that are built into the current diagnostic systems. One of the points made early on in the letter is that current diagnostic systems, “identify and locate problems within individuals.” Sarah, how are our relationships, communities, cultures involved in the symptoms that then get diagnosed by psychiatry and psychology?

Sarah Kamens: When we think about the quantitative research evidence, it is really clear that social factors play an enormous role in the generation of mental distress.

We can take the example of psychosis, which is an area of interest of mine. The research evidence has clearly laid out that the experience of psychosis is very much tied to social and structural experiences such as homelessness, not having a place to live, housing insecurity, economic inequality, racial and ethnic segregation, multiple deprivations, and childhood trauma. From the side of human experience, we might say that these “symptoms” are also results of exposure to our particular world.

Peter Kinderman: I was just thinking that maybe we should also point out some things have happened in the world of psychology and critical psychiatry since the DSM-5 was published.

After 2011, I think that we were surprised by the level of positive response that people had to our letter. There were a lot of people who are hungry for alternatives.

We’ve seen more research into the networks of associations and mediating processes between life events and mental health outcomes for people. We’ve seen the development of cogent, coherent alternative approaches such as the Power Threat Meaning Framework.

For me personally, one of the things that’s happened since the letter in 2011 is that I started to realize some of the potential for systems to not only capture information about individual psychological phenomena but also to capture those social determinants that Sarah talked about.

We’ve been so focused on identifying disorders, we’ve taken our eye off the fact that it’s perfectly possible to measure, to identify, to categorize, to respond to and take seriously both clinically and politically the phenomena that people experience (like low mood or hearing voices ) and the events in people’s lives (like domestic violence, racism, losing your job, or failing exams).

Sarah Kamens: I want to emphasize that there are serious consequences to ignoring the evidence we have for the role of social structures. When we locate symptoms within an individual, it can be detrimental on a number of levels.

One is to that particular person who is then not encouraged to or supported in examining the way in which their unique life historical circumstances might play into their distress. The person is not encouraged to explore the ways in which their social environment contributes to how they’re feeling.

On the broader societal level, exposure to this sort of mental health discourse that identifies problems within individuals gives us an excuse not to look at these social structures that make us suffer and that make us “sick.”

Peter Kinderman:  I’m somebody who believes that my thought processes emerge from the physical processes of an organic brain. I know that I think with my brain and I am genuinely interested in neuroscience. I’m interested in what happens biologically when people lose their jobs. I’m interested in whether there are consequences that you can see in not only in the psychological functioning of people (changes to your self-esteem, the way that you relate to others, a sense of optimism or agency for the future) but in measurable and identifiable changes to brain processes.

I’m really interested in that. But it’s more likely that we’ll be able to see changes in brain functioning and psychological phenomena following major life events than we will by studying the etiology of major depressive disorder. It is actually a foolish way to study neuroscience, let alone a foolish way to study sociology and psychology.

I absolutely agree with you that if we want to understand how toxic society’s impact is on us as human beings, we’ve got to move away from a disease model. But you know what? I think that if we want to understand how life events impact on a child’s developing brain, we’d be better off ditching the disease model there as well.

Sarah Kamens: Absolutely. I think that it’s important to say that of course all of these experiences have biological correlates and biological determinants as well. I think one of the questions is, “what does it mean to focus primarily (or sometimes even solely) on those biological determinants?

What happens when I identify someone as having anxiety or depression and provide them with medical treatment or maybe a psychological treatment for that and don’t focus on the fact that they have just lost their job? I think that those are the types of questions that we’re asking.

So absolutely, I think it’s really important to say there’s no denying that we are biological beings and that all of the phenomena that we’re talking about have biological correlates and often biological determinants as well.

I think a really good example of a bio-psychosocial model that really takes all of this into account is the social defeat theory of psychosis. The idea of the social defeat theory of psychosis is that all of these social risk factors that I had mentioned (homelessness, childhood trauma, migration, etc.) share the common experience of social defeat, or being excluded from a dominant social group. That experience of marginalization has an effect on the dopaminergic system.

Social defeat theory draws on animal models and some imaging research to show that, in situations of social defeat, indeed, there are alterations in the mesolimbic dopamine system.

We can, of course, model things like that. The question is what does mean to talk about someone’s dopamine system when they are sitting in front of you and they have just lost their job.  So, there’s a question of context as well.

 

Justin Karter: This discussion leads to another important question about how the current diagnostic systems impact service users and people who are accessing services. There are also people who find the current psychiatric diagnoses helpful. Can you address this point? What might it look like if this open letter is successful in challenging the current diagnostic paradigm and opening up more frameworks? How might it impact service users if there were multiple systems to choose from?

Sarah Kamens: It’s a wonderful question. First of all, if people have a number of systems that are in play and in the general public discourse, there’s more of a freedom of choice and, I think, more of an understanding of the relativity of these systems.

One of the issues that with DSM-5 is that once these diagnoses are put into play, they’re reified within public discourse. They’re made concrete and seen as these definitive biological aberrations. I think that having options that are different from the DSM would allow people to explore the meanings of what their particular stress distress is to them.

Now I think it’s really important that you’re asking about people who do find the current system helpful. I think that there are certainly psychological benefits to understanding, for example, that one is not alone, that other people have had similar experiences, that those experiences can be named and described, that people have gotten better or have felt better, and that there’s hope there.

One of the questions is, first of all, what are those benefits, and are those benefits unique to the DSM? There are other descriptions of mental distress, like formulation, like the power threat meaning framework, for instance. How can those types of alternatives also help people connect with communities, understand that they’re not alone, understand that there is hope out there?

With alternatives, we will have this greater freedom of choice, but we also have to respect people’s choices either way.

Peter Kinderman: The goal is not to tell anybody how they should think and certainly not to tell people how they should think about their own difficulties, but we are suggesting that there are alternatives.

I’m very taken by a blog that I read a few years ago by a junior psychiatrist. He seems a very pleasant and caring chap who slipped into his blog that he had a genuine belief that if he took somebody who was profoundly depressed and couldn’t tell them that they were ill, he had to respond by telling them they were being weak.

It’s really interesting that we are so constrained into this disease model way of thinking that many people, whether they’re people seeking help from the psychiatric system or people working in the psychiatry system, seem to default to the notion that if they can’t use language of pathology and illness, there is simply no other way of describing people’s problems other than to use pejorative language. It seems that if you can’t say, “I am ill with depression,” you have to say, “I am being weak and stupid,” and I personally want to move away from that way of thinking.

To return to your question Justin, what do we envisage? I would love to see a situation where I could go to my family doctor, tell them that I’m feeling depressed, and my family doctor could say, “okay, well let’s explore why.” They could say, “what’s happened to you?”

Personally, I think that that immediately turning to medication to help would be an unwise choice. I want people to listen to what I’m experiencing, understand what I’m experiencing, but not to assume that by understanding and listening and naming my experience that they’re therefore diagnosing an illness and should treat it.

I think they should listen to my experiences, understand it, name it, report it if necessary. If I turn up at my family doctor and say that I’m feeling anxious and depressed and then reveal that I’m being abused by my partner, then one of the questions is, do I need a safe house? Do I need the police involved? Giving the opportunity to name and describe what has happened and not defaulting into an illness model, and offering a drug to alter the functioning of my brain, allows us to start to think about alternatives that can address those problems.

 

Justin Karter: I want to dig into the different considerations that the letter recommends that should be addressed by any diagnostic system in order to push forward toward a new paradigm that works better for clinicians, researchers, and service users. What are some of the values and principles that the letter lays out?

Sarah Kamens: The recommendations that we make in the letter, in part, draw upon a document that was recently produced by one of the workgroups that came out of our global summit on diagnostic alternatives. We ended up

producing and eventually publishing the “Standards and guidelines for the development of diagnostic nomenclatures and alternatives in mental health research and practice.

[These principles include]:

  • The guiding values of developing or improving any diagnostic system or alternative should be the general promotion of public health and human wellbeing.
  • The purpose of developing or improving diagnostic systems should not be a professional or commercial benefit.
  • Diagnostic systems and alternatives should be developed free from industry influence and based on scientific evidence that is unbiased.
  • In terms of the leadership, those who are charged with developing or revising diagnostic systems or alternatives should include members of the general public, current or former users of mental health services, experts by experience, and family members, in addition, of course, to professional representatives who are free from conflicts of interest. There needs to be a democratic representation of relevant stakeholders and multidisciplinary professionals.

 

Justin Karter: The new open letter also lays out some very specific and practical recommendations for immediately improving diagnostic practice that do not require a complete transformation of the existing system. Can you tell us of some of these specific recommendations and how you see them improving practice in the short term?

Peter Kinderman: In the ICD system, because it was set up across the whole of medicine and healthcare, rather than a specific project of psychiatry, there is a system that allows health care professionals to respond to the needs of their patients. So the system includes methods for accounting for issues like pregnancy or taking preventative medicine or even doing things like resetting broken bones.

These aren’t diseases, but they are reasons why people go for healthcare. So, especially within ICD, what we have is a system for saying why has this person presented for help at this time?  These are perfectly legitimate reasons for accessing healthcare, but they aren’t diseases.

What my colleagues and I realized is that, within the healthcare system, there are ways of doing things differently.  We have things like phenomenological codes where you can say this person came in for self-harm or disrupted eating patterns or for low mood or guilt or anger, things that are reasons why you would go to see a healthcare professional, but aren’t diagnoses.

One of the things that we recommended is to look at existing codes for specific experiences of phenomena. The other thing is that, of course, people go to their healthcare provider because things have happened to them. This happens in physical medicine as well. There are codes for these things and we ignore them. There were codes for things like adverse experiences, childhood poverty, experiencing abuse, homelessness. These are all codes within ICD.

So, yes, we would like a total transformation of the diagnostic system, but one of the ways that we get there is to start recording specific experiences that already exist as codes, which will point to those social determinants.

 

Justin Karter: This letter is addressed specifically to several international leaders in the field of psychiatry. Why address these leaders in particular? How do you hope that they’re going to respond to this open letter?

Peter Kinderman: We’re particularly addressing people who have leadership roles in the most dominant diagnostic frameworks, DSM, ICD, and RDoC. We are also speaking to the wider public, to the media, to healthcare providers generally. In making it public, we’re inviting the leaders of those frameworks to respond.

I would like them to consider very seriously whether they are brave enough to suggest that the leadership issues, the conflict of interest issues, and the guiding values and principles issues are significant enough that they would be able to put their efforts under a slightly more democratic perspective. Instead of this being an exercise by doctors for doctors that is then imposed on patients, we are asking for this to be something that is for the public, by the public.

 

Justin Karter: Sarah, as you are co-chair of the task force on diagnostic alternatives, I’m wondering what you imagine comes next? What are the next steps for the task force and how will this open letter evolve from here?

Sarah Kamens: The truth is that I’m not really sure. The reason for that is that I think that we want to see what the response is to this open letter. With our original open letter, the response was unexpected. It was overwhelming, but it also allowed us to understand more about the perspectives and opinions and concerns of other mental health professionals as well as the general public.

I think that we’re going to wait and see what the response is and then see where people’s concerns and interests lie and then take things from there.

Peter Kinderman: In a sense, it is a statement of what we are up to and what we are thinking we are inviting comments to further the discussion.

In terms of next steps, we need to be open-eared to people’s responses. There are many people who worry that, because the system is based on so heavily on diagnosis at the moment, changing the system will make services harder to access. For instance, how are people likely to get services? How will people get help, get therapy?

Extending it further to institutions like the civil benefits system, the way in which people get benefits and financial support from the state is often heavily dependent on diagnoses. The way in which the criminal justice system responds to mental health issues is heavily dependent on diagnosis.

As we propose reforms to the way in which we go about making diagnoses, we have to listen carefully to people pointing out the flaws in the proposed alternatives that we come up with and to take those seriously and amend and change.

Sarah Kamens: One hope that we have is that the response to this letter will help us to refine our goals and narrow or expand as needed.

I think that is the general direction we’re headed in. We’re trying to remain open-minded so that we can gather people’s responses to the letter. We would love to hear input from Mad in America listeners today and if people have ideas for our task force or thoughts or suggestions, you can always reach out to us.

 

Justin Karter: I understand that professional organizations and individuals are both invited to sign on and add their support to this new open letter at the following link (here).

Sarah Kamens: The last line of our letter says as the next step, what we want to do is discuss these issues. That’s the point.

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You can sign the letter here: https://forms.gle/yHWjrTxHCv5tXx5t6

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