Inquiry into the Schizophrenia Label – Preliminary Results Out Now!

Apart from the admission of a thirty-year-old woman to a private hospital in London with a bit of morning sickness, the main thing to make the news here recently was the hullabaloo over the publication of the ‘Schizophrenia Commissions” report,  The Abandoned Illness. Earlier this year I posted about the Inquiry Into The Schizophrenia Label, which we (Jayasree Kalathil, Jan Wallcraft, Suman Fernando and I) set up to try to find out how service users, carers and others  perceived the label, and their experiences of it. It’s not been an easy task because we have had to fund it entirely ourselves, and try to fit it in around the rest of our lives. However, we have now completed an initial analysis of the nearly 500 responses and testimonies we received via our website.

We really want to thank all of you in Europe and North America (and a substantial minority of responses came from the USA and Canada) for taking the time to let us know about your experiences. The response has been absolutely amazing, and we still have a lot of analysis to do. We anticipate this will be complete by January 2013, and our final report will follow shortly after. And with no more ado, here is a summary of our results date.

 

‘Schizophrenia’: Time to Discard the Diagnosis?

Preliminary findings from the independent Inquiry into the ‘Schizophrenia’ Label (ISL) finds that over 80% of those who gave evidence believe the diagnosis is damaging and dangerous.

“The label has destroyed my life, friendships, relationships and employment prospects.” [Survey respondent]

“The doctor at the hospital kept asking me if I heard voices. I didn’t know what she meant by this. Was she checking my hearing, my awareness? Was she using a metaphor? I didn’t know. I said yes as I could hear the voices of nurses and patients on the ward down the corridor. That sealed my fate.” [Testimony submission]

“When [my son] found that some people recovered he was adamant that he would be one of these and this has helped him to fight for services he needs and to maintain good self-awareness. Therefore largely the label has not been unhelpful — but very very scary.” [Survey respondent]

The independent Inquiry into the ‘Schizophrenia’ Label (ISL) was launched in April to investigate the usefulness of ‘schizophrenia’ as a diagnosis and medical condition, and the impact this diagnosis has on people’s lives. Since the launch, the Inquiry received evidence from around 500 people in the form of responses to an online survey, testimony submissions via the Inquiry website, comments on Facebook, a focus group in Manchester, and other submissions in the form of articles, personal narratives and memoirs.

The coordinating group and the independent panel are currently collating and examining the evidence. Preliminary results from our survey show that:

  • The majority of respondents feel that a diagnosis of ‘schizophrenia’ is damaging: Over 80% of the respondents said that the diagnosis of ‘schizophrenia’ makes life more difficult for people diagnosed;  88% think that ‘schizophrenia’ is associated in the minds of the public with violence against others despite evidence to the contrary.
  • 50% thought that they would be treated more harshly by the criminal justice system.
  • 60% of respondents believe that ‘race’ and ethnicity affect the diagnosis of schizophrenia, for a range of reasons including impact of social class, racism and cultural assumptions.
  • Well over half (57%) of the respondents do not see ‘schizophrenia’ as a medical illness and do not think that there is enough scientific evidence to underpin the diagnosis.
  • 49% think that medication should be given only if a service user requests this.
  • 46% think that the diagnosis of schizophrenia should never be used by professionals in case notes or discussion, with the majority of these arguing that people’s own words for their condition or problems should be used.
  • Alternatives to diagnosis include working with people’s narratives as the basis for support and using techniques developed based on this concept such as those promoted by the Hearing Voices movement and the Finnish Open Dialogue project.

The recent report from the Schizophrenia Commission, headed by the mental health charity Rethink and the Psychosis Research Unit at the Institute of Psychiatry has made 42 recommendations to change the way people diagnosed with schizophrenia are treated. However, our preliminary findings show that the diagnosis itself and its usefulness and validity are under question and may need discarding completely. The initial reading of the evidence submitted to ISL shows that there is no consensus in how we should understand our own and other people’s distress and its manifestations, and that it is time to move away from psychiatric diagnoses and support people as fellow human beings rather than as people with a medical illness.

“I know that I experience some kind of ‘altered stage’ and I wish I could find non-medical language to talk about my experience without having to recite a whole chapter of my life…” [Testimony submission]

“I am in favour of formulating a co-constructed narrative of the service user’s problems and their personal meaning in the context of their life experiences. No diagnosis needed!” [Survey respondent]

ISL, supported by over 40 organisations and 250 individuals, has been run on a fully voluntary basis with no external funding. The Inquiry will report fully in the New Year. For more information and to read the testimonies, please visit www.schizophreniainquiry.org.

I will report more findings from the study as and when they become available, and the final report will be available on our website.

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26 COMMENTS

  1. That “abandoned illness” report was a travesty and I would go as far as to say a hypocritical document by people who are entirely complicit in the way services are structured in the UK. In fact they have benefited handsomely. Masters of self deception.

    The only good thing about it was Terry Bowers findings which they consigned to an appendix.

    Enough of that.

    This is much better. Great work! Cant wait for the full report.

    Down with the medical model. Up with hermeneutic phenomenology!

    http://www.youtube.com/watch?v=gi9vPkeoU6c&list=UUYAny30LXadW66b0EismGmQ&index=3

    http://www.youtube.com/watch?v=lX0J2pGDSMY

  2. The Schizophrenia Commission report used my case study. However, they asked for permission to ‘tweak’ it, on the grounds that my views re. the diagnosis (I am very anti) did not reflect the views of some of the Commissioners. When I said ‘No’ – that they did not have to use the study, but if they did then it must remain intact – the person who had contacted me said she thought I was right to stand by my principles, but that she had been asked not to include the line (about the diagnosis). She then asked for another opinion, and included the case study verbatim.

    Sometimes I feel despondent about all this, and wonder whether I can be bothered to keep fighting it. But I know what damage the word ‘Schizophrenic’ does to a person – even though I now recognise that I am not a ‘schizophrenic’ the label still hurts – and therefore I know that I must keep trying to make others understand the harm that is being done by the use of this word.

    • I’m so sad to hear how the commission (as opposed to the inquiry) tried to manipulate you. But the way you stood up to them is what I will hang on to.

      As far as feeling despondent, I know how that feels as well. What helps me is knowing that other people feel the same way as me. What ever I do I try and see in the context of a wider movement (as fractured and full of infighting as that movement might be) so again we don’t need to feel the burden is on ourselves all of the time. For me it’s important to take a break from the issues sometimes and look after myself.

      Sometimes I remind myself that I can’t help others if I forget to look after myself.

  3. One of the tricky bits around this whole issue is how we are to structure offering assistance to people, if we admit that the medical frame really doesn’t work. Western cultures have such an idea that the “individual” should be able to handle, by themselves, problems in living that aren’t medical. Framing “madness” as medical allowed society to direct resources toward “helping” though the errors in the medical model often resulted in more harm than help being provided. If we switch to framing it as non-medical, we will have to work to build a frame that says there should be organized help for people encountering some of the more difficult problems in living, and then make sure that “help” is really appropriate. This may take some work on changing cultural ideas about what an “individual” really is, and what social responsibility is…….

    • “[I]f we admit that the medical frame really doesn’t work.”

      “If we switch to framing it as non-medical…”

      Why all the “ifs”?

      Man up, man!

      Switch the framework in your mind first. It isn’t a medical issue. And as a social worker, you’re not medically trained, anyways. Yes, it is work to change cultural perceptions, starting with oneself.

      • Emily, I was writing about “we” meaning “society” or something like that, so that’s why I was using the “if.” I don’t have any problem myself (check out my other writings) with framing the problems that usually get diagnosed as “schizophrenia” as having to do with interactions, and as being certainly much more complex than any medical model.

        What I was trying to point to is the way that society currently sees people as deserving “help” if they have a medical problem, and not deserving of it if they just have “problems in living.” If society just said that the problems of those diagnosed with schizophrenia were not medical, and didn’t change anything else, then for example lots of people not ready or able to work would be cut off disability and wouldn’t be seen as eligible for any other kind of assistance, which could cause problems.

        • I think Ron has hit on something here. At least in the States, many would agree with Ron that if extreme states of distress or less extreme states aren’t framed as “illness” or “medical” than many will not be involved in “helping” Of course a lot of that help isn’t helpful, but there will be more of a “pull yourself up by your bootstraps” mentality if distress is successfully reframed as not/non-medical, not an illness. Interesting point Ron.

    • I volunteer to be the unofficial example.

      How WOULD people go about “assisting” someone like myself, a KNOWN psychiatric “case”?

      For starters, it would be nice to simply NOT view me as “mentally ill” – but there is no other “frame” in which to perceive me. (Rather good point I’ve just made).

      You say, “Western cultures have such an idea that the “individual” should be able to handle, by themselves, problems in living that aren’t medical”.

      I’ve had a “life” problem that began forming in August of this year. It has progressed and I’m at the point of wanting to take action. Because of my condition (prone to become “unstable”), I require supports (which I have NONE).

      The non-medical “issue” is personal, historic (old and ongoing) and emotional (emotional is the energetic potential to affect / effect others). Because my personal “life” issue actually becomes a “legal” issue, that means MONEY. And time. And human resources (people). At that, I am already defeated – and so I quote Michelle Obama:

      “because I have what most families don’t have, is tons of support all around, not just my mother but staff and administration. I have a Chief of Staff and a personal assistant, and everyone needs that; that’s what we need. (Laughter.) Everyone should have a Chief of Staff and a set of personal assistants. (Applause.)”

      (transcript here: http://www.momstowork.com/05/08/michelle-obama-on-work-life-balance/ )

      You say, “This may take some work on changing cultural ideas about what an “individual” really is, and what social responsibility is……”

      As an “individual”, I am worth what I can afford. I have to be able to pay people (hire them) to “work” for me, if I want creative control over my own life.

  4. I am sure that Phil Thomas is a decent man. I don’t know him in any personal sense, but his writings suggest a genuine interest in the ‘human condition’ however defined. However well-intentioned, or decent, might be the motives that underlie the ‘Inquiry into the schizophrenia label’ Thomas and his colleagues have led, the overriding impression is that this inquiry is a pointless exercise. Psychiatrists (so-called) first proposed the ‘diagnosis’ of ‘schizophrenia’ more than century ago and a small proportion are (only now) bowing to the pressures that have been building over the past 40-odd years to challenge, if not dispense with, this facile label for various complex problems in human living. Might I suggest that the question is not ‘how valid/appropriate/useful/disabling/demeaning(etc)’ is the ‘schizophrenia’ diagnosis, but how valid (etc) are any of the other psychiatric diagnoses in common use within the broad medical-psychaitric system? Why not propose dispensing with ALL of them, and get on with the serious work of building a new framework for appreciating and helping with, problems in human living?

    Ron Unger hints at the challenges that might be involved in confronting this issue head on. As a social worker he, perhaps more than anyone, must be aware that to avoid confronting such diagnostic’ madness, seeking alternatives means of framing problems in living, will only lead to further disenfranchisement of the people he (and his many interdisciplinary colleagues) seek to help.

    Two points may be worth emphasising. Firstly, if there is no ‘diagnosis’then how can the practice of psychiatric medicine survive? Personally, I would dispense with ALL psychiatric diagnoses, which I consider to be humanly and scientifically worthless. (See Barker P (2011) Psychiatric diagnosis. Ch 11 in P. Barker Mental Health Ethics: The human context Routledge: London and New York). However, I am not a psychiatrist. If I were I might appreciate the need for some kind of ‘diagnosis’, since this particular function underpins all medical practice. (The first law of professionalism is ‘protect the profession’).

    Without ‘diagnosis’ we are just people (lay or profesional) trying to identify other people’s problems in human living, with a view to helping them deal with them. Very simple. Very straightforward. Indeed, so simple and straightforward that one might ask why ‘psychiatrists’ have made the whole business so complicated, for so long.

    The ‘Inquiry into the Schizophrenia label’ runs alonside some other ventures, which seek to challenge the extant ‘diagnosis’ but seem concerned only to replace it with some other, ultimately flawed, label. People are complicated. People experience complex problems. How are we ever to address the personal, interpersonal and social complexities of such problems by flattening them with a label, which suggests that, ultimately, such problems are all, in some sense, the same?

    So, if I were a psychiatrist, I would accept that ‘diagnosis’ will be an essential part of my professional function. If it were not, then I would be asking, why do I want to be a psychiatrist, rather than any other member of the ‘helping disciplines’, most if not all of whom are NOT obliged to ‘diagnose’ (at least in the ‘medical’ sense) in order to offer help, support or caring to people in distress or difficulty.

    The seond point is more tricky. If people (patients/clients/ users/consumers etc) however defined, are NOT attributed a ‘diagnosis’, however inappropriate/useless/demeaning etc, how will they qualify for SUPPORT within the extant health/social care systems. Many such persons have challenged the current diagnostic system, but (arguably) many more are happy to accept the ‘diagnosis’ to qualify for different health/social care ‘benefits/insurance’. Why should I assert that this ‘diagnosis’ is ‘flawed’ or ‘worthless’ and risk prejudicing their means of economic survival? What would be gained by changing the ‘schizophrenia’diagnosis to (for example) the ‘integration disorder’ proposed in Japan? Ultimately, if not very soon, ‘integration disorder’ will come to mean exactly the same as schizophrenia’ to members of the lay community.

    When I read such ‘reports’ I hear the sound of people psyching themselves up for a battle that they are unlikely ever to fight, in person hand to hand: a battle that could have been fought, and won, 30 years ago, were it not for same vested interests that might prevent it from being won tomorrow.

    • Phil Barker,

      I agree with the basic sentiments, in every line of your comment – but one; I seriously question your question, “Why should I assert that this ‘diagnosis’ is ‘flawed’ or ‘worthless’ and risk prejudicing their means of economic survival?”

      Maybe I misunderstand that query of yours? Perhaps, you were being rhetorical? I am unsure.

      But, personally, I’ll not worry (not even momentarily) about attempting to maintain the sort of ‘care’ for anyone, that might literally require him or her to accept such labeling, as “schizophrenia” – as, frankly, in my view, that sort of ‘care’ is not good for anyone. (The price of accepting it is simply too high.)

      Otherwise, I agree with you entirely; and I wonder if, perhaps, Philip Thomas might concur with the brunt of your comment no less.

      I suspect he might well appreciate your overall message (as do I); I would guess so; for, he explains, of his group’s findings, that, “it is time to move away from psychiatric diagnoses and support people as fellow human beings rather than as people with a medical illness.”

      (To me, that passage, in Dr. Thomas’s post, is apparently all inclusive; he seems suggesting that, “schizophrenia” is but one psychiatric ‘diagnosis’ – all of which are variously misleading; and, so, all of them should be eschewed.)

      In any event, I, like you, believe in none of the psych-labels (not one of them); for, the more I study them, the less they make sense.

      And, like you: I, too, sincerely hope that the “schizophrenia” label isn’t simply changed, at last. (I know that pseudo- ‘solution’ was adopted in Japan – and can imagine similar ‘solutions’ being adopted elsewhere.)

      The concept behind “schizophrenia” must go.

      Once and for all, the myth of the Kraepelinian dichotomy must go.

      That is to say, this particular belief (that either an underlying ‘affective disorders’ on the one hand – or an underlying ‘thought disorder’ on the other – is responsible for ‘endogenous psychosis’) is tired, old psychiatric baggage, that must be abandoned – as it reinforces professionals’ beliefs, in “schizophrenia” and “manic-depression” (or, “bipolar 1”).

      The Kraepelinian *false* dichotomy must be de-constructed; and, really, that’s not hard to do – especially, today – as more and more people share their so-called ‘psychosis recovery’ experiences online; i.e., it becomes always more evident that, truly: there is no clear dividing line between supposedly distinct ‘types’ of so-called “psychotic” experience; and, all of these experiences (to the extent that we are pointing to real sufferings) have ultimately tangible, stress-related causes.

      Unfortunately, psychiatry (like the tired, old dualistic religion that it is) is deeply mired in medical, Manichean thinking.

      The traditional, terribly prejudicial stereo-typing, which characterizes such classic, dualistic psychiatric mythology, as the Kraepelinian dichotomy (and, note: both “schizophrenia” and “bipolar disorder” are – in all ways – dualistic/divisive concepts, by definition), is quite actually sacred to most psychiatrists – despite this fact, that: it’s easily disputed by basic observations of human experience (and despite the fact, that such labeling leads, everyday, to literally countless painful rejections of gentle people – especially, who are tagged with that “schizophrenia” label).

      Of course, such stereo-typing leads to much self-fulfilling prophecy; a genuine understanding of this leads to the rejection of the labels themselves.

      Yet, that conceptual division between supposed “thought disorders” and supposed “affective disorders” is itself a very powerful kind of delusion – a misapprehension of reality, undergirding nearly every psychiatrist’s professional belief system. It will not go away easily. (Notably, it is a division promoted even by highly understanding helpers – e.g., Dr. Jaakko Seikkula, of Open Dialogue; and, it was central to the views of the well-loved dissident psychiatrist, Loren Mosher, who founded Soteria; so, don’t expect that the “schizophrenia” concept to be jettisoned by many, in the field of psychiatry, any time soon.)

      Nor will other psych-labels disappear from most ‘mental health’ offices.

      Psychiatrists, firstly – but other ‘mental health’ pros, too – are plainly attached to such taxonomy.

      Thus, I appreciate your remark, “When I read such ‘reports’ I hear the sound of people psyching themselves up for a battle that they are unlikely ever to fight, in person hand to hand: a battle that could have been fought, and won, 30 years ago, were it not for same vested interests that might prevent it from being won tomorrow.” But, personally, I think the battle is won… each and every time another individual fully recognizes the true foolishness of buying into these psychiatric labels, their faulty premises and the false divisions they create.

      The battle is won, in all reality, then and there – as this fight is, I believe, one of genuinely winning hearts and minds, of friends, of loved ones and of colleagues – through a persistent application of sound reason and the telling and re-telling of true-life personal stories, which plainly and self-evidently transcend the many various misconceptions, that are otherwise forwarded, by adherence to classic strictures of psychiatry’s medical model.

      Respectfully,

      Jonah

      http://beyondlabeling.posterous.com/

      • Jonah,

        I love your writing. I followed what you had to say for the first few months I was on MIA over the summer with rapt mind-expanding attention.

        I did not know that Mosher and Seikkula are into the affective/cognitive disorder division. I find this interesting and helpful. I think it explains to me why I find Szasz, Healy, and Breggin as mildly revelationary in comparison to Whitaker. We don’t need more psychiatrists debunking mental illness on their terms, we need more social critics and journalists exposing what goes on under the rubric of “health care”.

        • Thought of something else:

          Jonah, I caught what you wrote to Mary Fry before it went to moderation and it will live on with me forever.

          When I was living the bipolar life of a drugged and numbed existence I went to acupuncture, alternative medicine, and all kinds of naturopaths. I would complain mostly of my fatigue. None, not one, had the decency to point out my wrap sheet of psych drugs (which they were privy to) were the probable cause. One M.D. did tell me he didn’t “believe” in anti-depressants. I give him credit (now) for that, but he didn’t give me much of a cogent argument why. Anyways, I now see that there is a collusion of sorts to respect and support other medical professionals’ reckless prescribing regardless of how “naturopath” the doctor calls him or herself and regardless of how adversely that affects the patients. Thank you for saying it should be otherwise.

        • Emily,

          Thanks much. Both your comments (December 8, at 11:01 and at 11:15) are kind. Occasionally, other commenters have been similarly encouraging to me, re my MIA comments (like you, in essence, giving me a ‘thumbs up’); usually, I’ve offered no response, as it has seemed to me, that responding might diminish the focus of the discussion, at hand.

          Here I acknowledge your kindness largely because – besides being complimentary – you’ve brought out a number of interesting points, pertaining directly to the issues raised by this post, which I care to address.

          You say you, “find Szasz, Healy, and Breggin as mildly revelationary in comparison to Whitaker.”

          You add, “We don’t need more psychiatrists debunking mental illness on their terms, we need more social critics and journalists exposing what goes on under the rubric of ‘health care’.”

          I agree with you, entirely, on that 2nd point.

          However, I feel Szasz and Breggin and Healy cannot be well compared to Whitaker, for Whitaker was never a psychiatrist (nor either was he any other sort of ‘mental health’ pro); on the contrary, Whitaker is a journalist.

          Indeed, I think Whitaker’s the kind of journalist you’re describing — which is to say, I deeply appreciate his journalistic work.

          Meanwhile, I hold those others to a completely different standard — being that they are psychiatrists, not journalists; though, all have published extensively. (I think you and I can agree: They are what you’ve called, “psychiatrists debunking mental illness on their terms.”)

          Szasz (who passed away this year) was a true revolutionary in the field, unquestionably; Breggin is, too.

          Healy is not (in my humble opinion).

          Healy is somewhat remarkable, in various ways; and, I give him credit for being not only a psychiatrist, but also a psychopharmacologist, who is openly and unabashedly critical of Big Pharma.

          But, his enthusiasm for ECT (his book on the subject calls it a great hope, “for the nearly half of all clinically depressed patients who do not respond to drugs”) is, to me, extremely troubling; I see that position of his, as dreadful; it is terribly hubristic, I think; and, otherwise, (it seems to me), he is a rather conventional psychiatrist — e.g., in his being deeply invested (at the very least, intellectually) in what Szasz called “the sacred symbol of psychiatry” (that symbol being the concept of “schizophrenia”).

          In Healy’s having, in fact, *authored* theories proposing underlying brain “dysfunction” (that would *supposedly* ‘explain’ the origins of “schizophrenia”), he proves to be, I feel, unbearable, when it comes to this “schizophrenia” subject.

          (Note: his brain “dysfunction” theories are not exactly the same as the usual ones; they are, perhaps, ‘novel’ in comparison; but, to me, that doesn’t matter – because I know that (A) “schizophrenia” is an ‘umbrella’ term; thus, to whatever extent ‘it’ exists, it is *not* a singular phenomena; and, (B) very many of those who are labeled with “schizophrenia” are people whose particularly troubling life circumstances evidently ‘called’ for a ‘break’ with the usual ways of thinking; and, so, ‘it’ can’t be simplified in such neuro-centric theorizing, as Healy offers. So…)

          I’ve taken some key words and phrases from an abstract, of a 1990 study by Healy, titled, “Schizophrenia: Basic, release, reactive and defect processes” (you can find that abstract at onlinelibrary.wiley.com). Here, as follows (directly below), are those key words and phrases – in the order in which they’re published online:

          “schizophrenic psychopathology … positive and negative schizophrenic syndromes … constituted by underlying … processes … stem from … frontal lobe dysfunction … coexisting minimal brain dysfunction … proposal for … the neuroleptic and non-neuroleptic pharmacotherapy of schizophrenia … development of intermittent pharmacotherapy … likely significance of emerging cognitive managements for clinical problems … future assessment of clinical [trials] of pharmacological agents in schizophrenia”

          To be fair, I admit: I’ve not read the full study — only the abstract; but, that abstract suggests to me, that Healy is a guy who believes very deeply in “schizophrenia” — and, furthermore, believes ‘it’ is a problem of “brain dysfunction” — and believes ‘it’ should probably be treated with drugs (albeit, on an “intermittent” basis).

          Yes, he’s willing to be more sparing, with drugs, than are most other doctors who have similar credentials; and, he’s willing to assume that so-called “antipsychotic” drugs might not be necessary, in some instances, of perceived ‘psychosis’. In fact, he states: “Some people would be better off without antipsychotics. These can be among the most rewarding people to treat.” (That line, of his, is absolutely great, I think; but, it leads me to wonder: what other sorts of ‘treatment’ would Healy recommend instead? Would or would it not include drugs and/or ECT?)

          Healy writes:

          “In the case of psychosis, the first thing to establish is whether the patient has schizophrenia rather than an acute and transient psychosis (brief reactive psychosis). These latter psychoses, roughly 15-20% of psychoses, recover fully even without treatment, although antipsychotics may speed this process up.”

          And, he adds,

          “In the case of schizophrenia, the best outcome is a matter of finding a treatment and dose that suits passably well, and makes the person more functional. It may be a low dose of one antipsychotic will produce the best effects but that these effects don’t amount to a lot. In this case, the antipsychotic needs to be supplemented by an entirely different approach.”

          (He doesn’t say *how* he’d determine that someone supposedly “has schizophrenia”; nor does he indicate *what* that “entirely different approach” would be.)

          All of the above Healy quotes (except those from his above-mentioned 1990 study-abstract) are from his, “Data Based Medicine Paper: The Antipsychotics for Prescribers”

          http: //davidhealy.org/wp-content/uploads/2012/06/DBM-Paper-Antipsychotics-for-Prescribers.pdf

          And, by the way, note, I have recently addressed Doctor Healy regarding the “schizophrenia” label, in comments under his recent post, “The Madness of Psychiatry”:

          https://www.madinamerica.com/2012/11/the-madness-of-psychiatry/

          Finally, on your mentioning what I wrote to Mary Fry: Thank you very much for sharing what you did about that. (Thanks, too – for sharing your experiences.) I shall say nothing more here, on those matters, as doing so would be off-topic (of the “schizophrenia” label).

          Respectfully,

          Jonah

    • Phil – some of us are in the thick of battle, fighting hand to hand, as we speak. Using whatever weapons are to hand. And sometimes it’s about the doing of it rather than the winning of it. As I see it.

      Regarding psychiatric diagnosing and labels, well me and mine are very familiar with those and personally I have always disregarded them, as they bear no relation to my everyday life or to my getting out of the psychiatric system.

      And why shouldn’t people take whatever benefits are available? We’ve been given lifelong labels of mental illness and corresponding drugs to back it up – lithium, anti this and that. Let the system support us since they put us there. It’s only right, in my opinion.

      I didn’t get involved in this battle because I had nothing better to do. But because it is the right thing to do. So I am hopeful for change and expect change. As you have said many times, the only constant is change.

      Regards, Chrys

    • I think you need to look at the inquiry pages as it answers most of your questions about the motivations.

      http://schizophreniainquiry.org/why-inquiry

      We are aware of the increasing unease, even among psychiatrists, about the use ‘schizophrenia’ or ‘psychosis’ to describe complex problems of living. More importantly, when these are used as labels attached to people, they can cause serious problems through increasing stigma and undermining the humanity of people given these labels. Indeed, some people seem to suffer from the labels more than they do from other problems of living. Black people in Britain seem to suffer disproportionately in this way.

      In December 2011 we noted the launch of a project called ‘Schizophrenia Commission’ and saw how it was set up without much discussion with service user/survivor organisations and organisations working with black and minority ethnic communities. It seemed to be dominated by a unit that researches ‘psychosis’ and structured in a narrow medical framework that accepts diagnoses as valid ways of labelling people. We felt that the time was right to launch an inquiry into the ‘schizophrenia’ label. And, when we found that such an inquiry was strongly supported by many organisations and individuals, and that many of them were actually willing to do so publicly by allowing us to include their names on our website, we decided to go ahead, raising funds for our expenses as we went along.

    • These issues do get a bit complex to address in short comments, but I will try to take a stab at it!

      Our society is currently organized around the notion that problems can either stem from a medical or mental health “disorder” or “illness” or whatever, in which case the person deserves “help”, or the person’s problems are just their own problems in living, and they should figure out how to solve them themselves.
      There are those who think they are “helping” people by supporting the notion that they really do have a validly diagnosed disorder and need assistance, and then there are those who think they are helping people by declaring that diagnosis is a fraud etc, in order to save people from misguided help and stigma. But in the latter case, there is the problem that if only diagnosed people deserve help, and if one no longer has a diagnosis, then no help is available, and the person may really need some kind of assistance!
      A middle ground kind of position would be to see people who realistically were in need of some kind of assistance as being worthy of help, though we would want to find better language for describing what it was they needed help with, and what sort of help was likely to be helpful, etc. Obviously, this varies by individual, but we would need some kind of concepts and categories. It doesn’t really work to just point out that everyone needs help, because even though that is true, there is also the fact that some people need forms of help that others don’t, and we need ways of talking about that, so we can get the right help to the right people.
      By the way, I agree with Jonah that the “Kraepelinian divide” should go, but at the same time, we will still need language to talk about the differences and variations in what people are going through, even when we understand they have their origins in complex reactions to and interactions with life problems and cannot be understood separate from that.

      • _________________________

        \\…Our society is currently organized around the notion that problems can either stem from a medical or mental health “disorder” or “illness” or whatever, in which case the person deserves “help”, or the person’s problems are just their own problems in living, and they should figure out how to solve them themselves…//

        _________________________

        Ron,

        Beyond any shadow of a doubt, I know you mean well, so I ask you, with all due respect: What are you saying, in that passage, really?

        I stare at it, wondering – until I think: maybe, when you say “help,” you really mean to imply, “free help.”

        If that’s the case, then we should be clear and say it…

        And, if that’s the case, then, yes, true: *free* help – of most sorts – can be hard to find in our society.

        On the other hand, as you well know, our society offers help of countless kinds, to people who have the funds to pay for it. One whose means are unlimited can buy every sort of help, under the sun – assistance of any kind – for each imaginable problem; and, the more money one has to pay, the more likely it is s/he’ll be in a position to find helpers amenable to defining whatever the problem is, with terms wholly agreeable to the customer.

        But, now, it seems our society is actually on the verge of offering a considerable amount of choice, in free ‘health care’ – to its citizens.

        Our society already offers free ‘help’ — of an extremely limited kind — to people said to suffer from “mental illness” (and, “mental disorder,” etc.); but, why is that?

        In my view, that’s mainly because it’s widely presumed such people would, otherwise, pose a ‘threat’ of some kind (‘threats’ to themselves and/or to other).

        A problem is called “mental illness” or “mental disorder” largely to limit a particular identified “patient’s” rights and alert the authorities, that here’s someone who presumably can’t be trusted – as are others – to remain a sovereign/autonomous citizen.

        Particularly, if/when tagged with that “schizophrenia” label, there’s that implication.

        ‘Hey, here’s someone who absolutely must — at the very least — remain under the professional scrutiny of so-called “mental health providers” (almost certainly, including psychiatrists).’

        Tagging someone with “schizophrenia” has no specific meaning other than that.

        Though it implies the possibility of various behavioral ‘symptoms,’ really, psychiatrists (and many other ‘mental health’ pros) essentially agree to pretend, that it represents a particular condition (called a “mental illness”).

        In fact, this (“schizophrenia”) is little more or less than a utilitarian tag, placed on those (most often, young adults – and, disproportionately, minorities) who are identified as ‘problematic’ for their apparently troublesome, non-consensual ways of thinking and being.

        I say that not to condemn those who use the “schizophrenia” label, in describing whatever it is, that they view as such; but, I do believe that this particular psych-label survives mainly because it works — to enforce virtually absolute, psychiatric control over people who are, unfortunately, viewed as thinking and behaving in ways, that – while not necessarily criminal or illegal – are, nonetheless, seemingly indicative of someone who presumably must *not* go professionally unchecked and/or unmonitored.

        So, you explain that, “Our society is currently organized around the notion that problems can either stem from a medical or mental health ‘disorder’ or ‘illness’ or whatever,” and you say, “A middle ground kind of position would be to see people who realistically were in need of some kind of assistance as being worthy of help, though we would want to find better language for describing what it was they needed help with, and what sort of help was likely to be helpful, etc. Obviously, this varies by individual, but we would need some kind of concepts and categories. It doesn’t really work to just point out that everyone needs help, because even though that is true, there is also the fact that some people need forms of help that others don’t, and we need ways of talking about that, so we can get the right help to the right people.”

        I disagree.

        I think all we need to define are the various available kinds of therapies. (Here I mean to imply psychotherapies and other cognitive therapies, behavioral therapies of various kinds – individual and/or group – but also music therapy, sports therapy, vocational counseling, mentoring, and on and on.) In my view, were we to think clearly about these matters, we could agree, simply: those who would *willingly* avail themselves, of any particular form of quality therapy, need never be labeled.

        I kind of like the sound of this “existential-phenomenological psychotherapy” – that’s offered by Mick Bramham:

        http://mbramham.blogspot.com/2012/02/people-not-labels-or-categories.html

        And, I think Patch Adams is a great example of a doctor who’s thinking outside the box (watch at least the first 6 minutes):

        http://www.youtube.com/watch?feature=player_embedded&v=CdCrPBqQALc#!

        Ideally, our society could (eventually) come to accept, that: it’s in *everyone’s* best interest to provide free, quality therapy, counseling, etc., for *anyone* who wants it – completely needless of established “diagnoses” of any kind.

        Meanwhile, I think it would be good if more therapists and other helpers made it clear, that they’re available to offer some of their services pro bono (i.e., *free* to those who plainly cannot afford to pay).

        Respectfully,

        Jonah

        • And, P.S.:

          I forgot, in the end, to emphasize this point — (if it is not already obvious from the links I’ve offered and from all I’ve said) — *most* importantly:

          In my estimation, it would be great if more therapists and other helpers could make it perfectly clear, that: quite honestly, they place not the least stock whatsoever in psych-labels — that, in fact, they prefer their clients to reject psych-labeling.

          “People not labels or categories,” says psychotherapist Mick Bramham, in that link I’ve provided, above.

          To my mind, that’s a genuinely helpful/therapeutic attitude.

          • Hi Jonah,

            I certainly agree with you that the categories are stupid, and when I teach counseling or practice it I suggest paying attention to stories and experiences, rather than categories. We still need language that notices commonalities and differences in various kinds of experiences however.

            And yes, I was talking about a society’s need to decide when and where free help should be provided. Because when people are “mad”, they frequently don’t have money. Also, they frequently need more than just therapy – whether that is an Open Dialogue team or a Soteria house.

            And the free therapy idea, while nice, has a problem in that a society would need some idea of how to decide what was “real therapy” versus just talking to someone, else people could form friendships and meet every week with one person getting paid to do it as the “therapist.”

  5. I think that it is excellent that there has been an organized effort to collect people’s opinions of the damage caused by the schizophrenia label. Change has to start somewhere. Yes there are vested interests, and yes the history of schizophrenia, once you read it, shows its origins in politics, not science(American madness:the rise and fall of dementia praecox is a pretty good book about that), and yes other diagnoses are just as bogus. Phil you are dead wrong that this is a pointless exercise. Knowing that problems are not medical, as Ron Unger does, in no way obligates us to guarantee solutions to the real problems which are about being human. I doubt it is possible to solve all the problems that come with that territory. However, just quitting the destructive nonsense that psychiatry introduces will at least put us in a position of dealing with the real issues or nothing. It will also have the possible side benefit of reducing the amount of poisoning and brain damage caused to people who are suffering from bad family dynamics, huge life stresses, nutritional deficiencies, being extremely sensitive, whatever, etc. No matter how much farther we get than that, it would be a good start.

  6. It’s sad that hundreds of thousands of us really do have medical conditions thanks to being diagnosed and treated – the “Epidemic” in Whitaker’s “Anatomy.” At least one generation of folks who entered the wrong door during their crisis will need medical treatment for iatrogenic addictions and life threatening iatrogenic diseases for years. We go begging to doctors to acknowledge and treat these real drug induced illnesses, to help us taper off and they mostly refuse to help us save our lives. So far we learn about effective medical and emotional practices from peers who have survived. Folk medicine in an age that thinks it’s so high tech.

    Yes, a public health system with an Open Dialogue-like team of one office doc (good for a couple of sleeping pills as needed and tests for real medical problems like thyroid) and 2-3 therapists that make an immediate visit to a home in crisis and visit for as long and as many times as it takes everyone to feel better. No diagnosis, often over in 2-6 weeks, no iatrogenic addiction, death or disease.

  7. It seems to me that Western society is far too set on wanting to change (sometimes by coercive means) those who appear not to conform or who are not easily understood or accepted. Labelling people with mental health diagnoses such as so-called “schizophrenia” gives the misleading impression that doctors are able to make sense in medical terms of apparent differences. I think this is not just misleading but dishonest. It also means that patients and their families place confidence and trust (initially at least) in the treatments then offered on the basis of this assumed medical authority.

    Perhaps we are far too taken with the idea that people should be treated and/or changed – with psychotropic drugs or intrusive therapies. It is my experience that people benefit from my open approach to life: from a willingness to get to know them and to allow myself to be known too. It is then less about ‘professionals’ helping others, but about our being together and finding our way in and through life. Treatments, whether pharmacological or psychological, tend to focus on resolving problems and differences rather than on knowing and understanding a person. We need to move not just beyond diagnostic labels but outside of a treatment mentality.

  8. Congratulations to all involved in the Inquiry.
    Just in time to include in the second edition of Models of Madness, where we summarise all the other findings showing (a) that the majority of people who receive this diagnosis do not believe they have a biological/medical illness, (b) that the public in general agree and (c) that the label is powerfully related to sterotypes and prejudice.

    for a published summary of that research see:

    READ, J., HASLAM, N., SAYCE, L., DAVIES, E. (2006) Prejudice and schizophrenia: A review of the ‘Mental illness is an Illness like any other’ approach.’ Acta Psychiatrica Scandinavica, 114, 303- 318.

    Unsurprising, then, that the drug companies continue to spend millions on ‘destigmatisation/education’ campaigns that try to teach the public to use the diagnostic label and to believe it is an illness.

    Great that ISPS (www.isps.org) recently changed its name (by an overwhelming vote of our 1500 members) from International Society for the Psycholgical Treatment of Schizophrenia to International Society for Psychological and Social APproaches to Psychosis

    best wishes to all for a diagnosis free 2013 !

    John