A National Scandal: Psychological Therapies for Psychosis are Helpful, But Unavailable

Peter KindermanAnne Cooke
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For years, drugs were it. If you felt paranoid, heard voices or were diagnosed with schizophrenia, the only thing likely to be on offer was ‘antipsychotic’ medication. Like all drugs, these have a number of different effects on our nervous system. Some of the effects can be helpful, for example calming us down or making our experiences less intense or distressing. Others may be less desirable. The unwanted effects – euphemistically called ‘side’ effects – of these particular drugs can be seriously distressing. For some people, they can be more disabling than the original problem. Despite the drug industry hype, it’s been a fine balance for many people, and worrying evidence is now emerging that some drugs can cause serious and permanent problemssuch as brain shrinkage if taken long-term.
In view of the downsides of antipsychotics it comes as something of a relief that there is a possible alternative Psychological approaches such as cognitive behaviour therapy (or CBTp, the ‘p’ standing for psychosis) have become increasingly popular. NICE (the National Institute for Care Excellence) is sufficiently convinced of the effectiveness of these approaches to recommend that they should be offered to everyone with a diagnosis of schizophrenia. Traditionally they have been offered in addition to drugs, but a recent trial suggests that they might also be promising as an alternative.
Last week saw a flurry of debate about this issue. On Wednesday, the Guardian published an article somewhat sceptical of the value of psychological therapies for people experiencing psychosis. The same day, a packed house at London’s famous Institute of Psychiatry debated the motion ‘This House Believes that CBT for Psychosis has been Oversold’. We were there: Peter was one of the speakers against the motion.
The proposers of the motion suggested that CBTp should ‘live or die by meta-analysis’. A meta-analysis, for the uninitiated, is a statistical technique that allows findings from various trials to be averaged out. As in the Guardian article, the argument was that some of the claims made by researchers in this field have been overblown.
Psychiatrist David Kingdon, himself a leading researcher in the field and responsible for some of the trials, countered that only certain studies get selected for meta-analyses. He also gave some of the background behind the figures – what actually happened, and what the (often positive and grateful) participants in the studies actually said. The yardstick for overselling in the mental health field has to be the efforts of the pharmaceutical industry. Professor Kingdon asked the audience – many of them NHS clinicians with offices overflowing with drug company freebies – if they could remember ever seeing a mug or post-it note with ‘Psychological Therapy for Psychosis’ or ‘CBTp’ printed on it in a fancy typeface? There was slight shuffling while members of the audience discreetly covered up the drug company pads and pens they were using…
As often happens, all four debaters were white, male, middle class academics, but we did hear from people who’d been offered therapy, including this man, David: “CBT has helped me remain aloof from this voice and I no longer believe what it says. I now think of it as a petty bully and don’t let it bother me…. The only thing I regret is that I didn’t have access to CBT sooner – it could have prevented a lot of suicide attempts and I wouldn’t have felt so awful for so long.”
The problem with many trials, and therefore with meta-analyses too, is that professionals decide in advance what they are going to measure and what counts as a ‘good’ outcome. Those may or may not be the things that are actually important to people. For example, trials frequently measure ‘symptom intensity’ – how loud someone’s voices are, say. That may of course be irrelevant to how upsetting the person finds them, how satisfied they are with their life more generally, or what their expectations of therapy are. Even if the intensity of the ‘symptoms’ doesn’t change much, therapy may help with other things, as David’s account illustrates.
We also heard evidence that CBT can actually lead to changes in the ‘wiring’ of the brain – it’s not just a sticking plaster solution. And unlike drugs, talking therapies are only ever offered to people, not foisted or forced on them. The influentialSchizophrenia Commission recently found that despite CBT for psychosis being recommended by NICE, only one in ten people who could benefit are actually offered it. The other nine presumably get drugs, willingly or in some cases under duress.
Then it was time for the audience to join in. And they sure did. One person was concerned that CBT might squeeze out other psychological approaches. A psychiatrist thought that was irrelevant given how few people are offered any talking therapy – he said that in his whole career he had never come across anyone experiencing psychosis who had been offered CBT. Others pointed out that things are moving apace as we learn what people find helpful, and rather than splitting hairs over the relative merits of different approaches, we should celebrate that we now have the science to back up what service users have been telling us for years. When we’re in great distress, be that because of life events or so-called ‘psychiatric symptoms’ like voices, we need the opportunity to talk through our experiences and – where relevant – how they have affected our view of the world. We need a calm, supportive and non-judgmental atmosphere to do that in, with someone familiar with the territory. If that was what mental health services provided, rather than – as too often happens – just insisting that people accept that they are ‘ill’ and take drugs, the outlook for those of us who need to use them might be very different.
And the result of the debate? At the show of hands beforehand, the audience was evenly split (83 for, 87 against, 61 abstainers). After the arguments had been heard, around half of those who had previously voted for the motion went over to the other side, together with more than half of the abstainers. Only 47 voted for the motion and 25 abstained. The vast majority, 132, decided that CBTp has NOT been oversold.
The issue is not one of overselling, it’s that psychological therapies are shamefully underprovided.
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This article first appeared on the website Discursive of Tunbridge Wells

43 COMMENTS

  1. My son was one of the people who was never offered any talking therapy in the East-Midlands. He was sectioned and coerced into taking antipsychotics. I found that the medication was actually stopping him from thinking things through. Once allowed home, he came off the medication behind the psychiatrist’s back. He was able then to rationalise and leave all his fears behind. The meds did hinder him, not help him. It would have also been nice to see a friendly face while in hospital interacting with the patients and not speaking to them as if they were children. The staff weren’t engaging with the patients at all. May be they should be trained into how to relate to patients. I suspect that there are not enough clinical psychologists going around. I sat there just listening to him and I think it helped.

    • In my experience CBT and other straightforward psychotherapies work better than medication and can lead to full recovery from ‘Schizophrenia’, even after years of anti psychotic abuse. By Recovery I mean a return to productive life and independence.

      Tranquillizers are not medicine they damage the brain and turn people into psychiatric patients. Each longterm psychiatrically disabled person costs the UK taxpayer about £36,000/year (mostly in overheads). This is good money for zero performance.

      I don’t think it has to be all or nothing though. The drugs can be reduced to safe levels and the Talking Treatments used to deal with problems as they come up. This type of gradual approach worked very well for me.

  2. I completely agree with Alix’s comment. I was hospitalized and medicated for depression and psychosis as a teen. I have never forgotten how condescendingly I felt spoken to by many of the mental health employees on psych wards. I observed this recently when visiting an adult friend of mine who was being treated for depression in a local psychiatric facility. The social worker was trying to convince him to watch a video on shock therapy, which he obviously did not want to watch. She spoke to him as if he was a 2 year old.

    Having now been a therapist myself for the past 25 years, I still remember a nursing student and a psychiatric intern who spoke to me when I was in a delusional state of mind.
    They treated me with dignity, honesty and genuine concern. Even in my confused state of mind I could feel their respect — it was healing and a lasting model for my own work with clients.

  3. It’s bizarre that talking about psychosis doesn’t happen as a rule. It’s quite the elephant in the living room, isn’t it?

    I think I’d prefer a patient directed approach, but with informed consent about trying out different schools of counseling, if one session didn’t do it. I’ve found that for trauma related counseling, cognitive therapy is dry and misses the point entirely.

    I just started looking up delirium for some reason. It’s been three years since my only psychotic episode, and I’ve once again run across this:

    “Visual hallucinations are more commonly associated with neurological illness than primary psychiatric disease, whereas complex auditory hallucinations usually accompany delusions in primary psychiatric illness. ”

    I had vivid, visual hallucinations, I did not hear voices. I also have MS and was taking several medications that can cause psychiatric symptoms, was under some profound life and death of a best and only friend threat, and was hyper-vigilant. And more. I was also drinking vodka with morphine and experiencing the worst and most extended period of sleep deprivation of my life, thanks to nerve pain, PTSD, night sweats, and fear of impending devastation, all at once.

    Does it make any sense not to talk to someone about their psychosis enough to establish what happened? Even if a person did have a psychiatric label, it does not necessarily follow that that is why they’re psychotic in any given moment. What is with the compulsion to make such quick diagnoses then close the book? Are they not getting paid enough to talk to a patient for ten to twenty minutes in which they are not granted absolute control of the dialogue and can take the patient’s account of themselves as a construct that might even be as valid as their own brief impressions based on the disease they’ve labeled you with?

    I’d really like to sit down with that psychiatrist and have a talk. I can see his condescending smirk clearly, right now. (I can also see myself with a cream pie and an impulse that I can only indulge in my imagination. That sometimes helps for some reason.)

    There’s something very lazy, compulsive, and whatever the word would be for a phenomenal lack of curiosity in the status quo of psychiatric treatment for a mental breakdown. Guess I’ll get back to my drawing board of studying what happened to me by researching delirium and psychosis some more. I remember every moment of my psychosis, and the times directly before and afterword. I know what the trigger was. The content was all directly related to a specific trauma. The feelings were a flashback of the feelings I had during the trauma and during every flashback and night terror since. It was a perfect storm of past, present, and future stresses and vulnerabilities.

    Before they pushed me into the floor and forced medication, I was coming out of it, feeling scared for having been psychotic, but also feeling amazed by the power of it— of course I cracked. The enormity of the stress I was under impressed me. I wanted that to sink in a for a little while while I got my bearings. They didn’t have time for that, I suppose. And when they showed their disregard for me and my request to be left alone the third time— offering medication to me that I did not want and had politely and unambiguously refused three times— I slapped the medication out of the nurse’s hand, and so was piled on by four people and shot with an antispsychotic cocktail. Funny that they didn’t want to talk about what happened to me those two days I didn’t remember, either, thanks to the drugs. Anyway, I’m kind of proud about just how much it took for me to lose it.

    It would have been nice if I could have talked about it without being mocked or being greeted with a smug sense of superiority. Evidently, I’m so damaged that I thought a first episode of psychosis was worth talking about. It would also have been nice if my sure knowledge was proven wrong and “agnosia” was not going onto my chart every time I answered “why are you here?” with the answer. Because I insisted that my psychosis and the contents of it were relevant to my first involuntary commitment, and the second stay ever in a mental ward, at the age of fifty, I was somehow proving their point about how detached I was from reality. The first stay was for PTSD and the same trauma that was the subject of my psychosis was at a V.A. hospital. Coincidence? Or psychic phenomenon?

    It would have been nice to have been able to talk about my first and only psychotic episode with any one of the mental health professionals who were so busy looking at monitors, shaking down patient’s possessions for contraband like tea with caffeine, or talking about helpful tips for relieving stress that you can find in any women’s magazine. That’s worth $1,000 a day right there, don’t ya’ think? I wonder how long they would have insisted I stayed if the V.A. wasn’t picking up the tab?

    All I needed was a sedative and some sleep and someone who would listen to me enough to take the most profound mental experience of my life seriously and to help me deal with it. It’s wrong and truly bizarre that a person can be locked up in a mental ward for two weeks, be given eight different drugs in that time, and not be allowed to talk about what got them there.

    Psychiatry needs to start studying some psychology, especially the psychology of cognition so it can get its head on straight. It’s crazy.

    I’m only speaking for myself here, but I’m betting a lot of people feel the same and a lot more would feel the same if they felt like they had permission to question this eminent, yet psychologically disturbed and emotionally stunted profession.

    Present company and those who don’t fit the description need not take it personally.

    • You’re totally right – I do feel the same even tough I have never been psychotic, only overemotional if you like. And when I think about talking to a psychiatrist again I don’t think about cream pies but something else. I guess that makes me bad person.
      Honestly, I sometimes felt like I was sitting in front of a psychopath. The guy had a smirk on his face, was clearly trying to manipulate me and I felt like I was playing a part in Silence of the lambs. I sometimes wonder how many of the people who become psychiatrists are completely normal and just get corrupted by the system and how many of them take some sick pleasure from it.
      You don’t even have to go as far as to slap pills from someone’s hand: enough you refuse to be touched or shout at someone. That’s all it takes to be “dangerous”. How much of a coward do you have to be to attack a small women in four people, a woman who’s unarmed and not even fighting? But if someone tried to discuss the sense of coercion with them they always start talking about 2m tall guys who are trying to kill everyone around. Interestingly, I’ve never heard about a psychiatrist being hurt or killed by a patient. One would think that should happen often when the mental people are so dangerous. I’ve only heard nurses sometimes whine that they get scratched. Probably while they were trying to tied a panicked person in order to drug them.

      • Hey, b, I wrote two replies to you yesterday that didn’t post.

        In the eighties I read that psychiatrists and lawyers were top in their field for being attacked by their clients. I can understand being wary of attacks, what I don’t understand is mental health professionals treating people like they’re going to blow up at any minute.

        I saw a nurse on the local hospital ward shouting to her colleagues, “HE’S RESISTING!” HE was a very large teddy bear of a man with downcast eyes who looked like he was doing everything in his power to make himself smaller so she wouldn’t be afraid of him. He looked like he was worried about her, for her sake. The “resisting” part was him not being able to understand English no matter how loudly she spoke it. That was some twisted psychology on her part and a failure to read the situation.

        Also in the eighties, I had a house-mate who was thin as a rail, delicate looking, and had a slight handicap in one of her legs. She worked in the state mental ward and had been taught well how to restrain people without hurting them or her herself. She could get a handle on a big guy by herself while calling out to other staff to help to her. No one appears to get that kind of training anymore. Police use tasers on unarmed mentally ill people in public when they used to restrain them with their bare hands. I think they need to be taught better methods of self-defense.

        • Well, they may want to ask as why they are being attacked:
          “One study provided impressionistic data which indicated that the personality of the psychiatrist was related to being attacked, namely, psychiatrists who are highly irritable, who speak up when mildly angry, and who are likely to fight when faced with a physically threatening situation are substantially more likely to be attacked than psychiatrists who do not have these attributes.”
          http://www.jaapl.org/content/19/3/309.full.pdf
          The whole coercive setting creates an atmosphere that encourages violence. Staff is scared and disrespectful of their patients and patients are scared and hate the staff. Maybe if you treated your patients like actual human being it could help…
          I think some of the psychiatrists I’ve come in contact with were afraid of me. I’m a small person, 1.6m tall, very skinny. I wonder what kind of a danger I could possibly present to anyone unless armed (which was never the case). Yet I could see fear. So on one hand I had guys who were treating me like a lesser being and the others who were treating me like a wild dangerous beast. I wonder how can anyone ever get better in this system if not in spite of being “treated”.

          • Thanks for the link, b. It’s a very small sample, but research like this comes out about every ten years, always comes to the same conclusion, and is roundly ignored in the mainstream.

  4. THE TRANSFORMATIVE AND EMPOWERING ROLE of SURVIVOR COLLECTIVES is now crucially necessary for clinical and academic knowledge to rebuild relevancy, validity and potential for recovery support – COLLECTIVE CHANGE and REDISTRIBUTION of KNOWLEDGE BUILDING POWER URGENTLY NEEDED

    I appreciate that the discussion about the availability and assessment of how CBT for ‘psychosis’ is carried forward here on the MiA blog, my constant source of inspiration, learning, and, yes, comraderie with socially engaged survivors and mh professionals with lived experience of sharing ‘clients’ problems, distress and extreme experiences in their real worlds.

    Having attended to the ‘debate’ if CBT for psychosis has been oversold, I am thankful for Peter Kinderman actually including the voices and views of clients who had received CBT and their carers. For me it was crucial to ave the occassion to appraise the respectul and emphatic attitude Peter Kinderman has toweards his ‘clients’. Because, yes, I am critical of the academic conceptualisation of CBT as in the individual’s thinking causes the indivividual’s affective appraisal and it’s the individuals affective-cognitive ‘praxis’ which cause te individual to behave is a specific way. Sounds like an artificial exercise, pardon, experiment in some psychological laboratory. This needed to be said, in an oversimplistic fashion, as the London debate was not the place to discuss WHAT kind of CBT was (to be) ‘delivered’ by WHOM, only clinical psychologistsß, with what kind of training and ‘clinical’ experience and attitude (human beliefs), HOW MUCH of CBT, individual CBT or group CBT, WHAT are the safeguards that the beliefs, voices, experiences of the clients are respected etc.

    During the debate only the mean aggregated effect of CBTp treatments, measured as change in ‘positive symptoms’ or compiled ‘positive and negative symptoms, was presented in the way scientists do this: as a meta-analyses, a summary and weighting of the mean overall effect on clients’ symptomatology from all included CBTp studies. For information, the overall effect size from approx 20 trials was found to small – and confidence intervals cause for statistical doubts on chance findings, by the presenting scientists wo backed the notion that CBTp for psychosis has been ‘oversold’.

    Dear reader, pls do not shoot the messenger, I did not choose the terminology neither the methods = how to conveice and manualize CBTp and how to assess its ‘impact’ on ‘psychosis symptoms’ in the trials/studies. However, the aggregation of the studies in a meta-analysis is what mental health politics, mh professionals commissioning and decision making is expected to be based on. It builds the famous scientific ‘evicence base from most rigorous and unbiased studies.

    My criticism is straightforward – I question the danger of training individuals attention and behavior in self-centred thinking, feelings and behavior at the dispense of the biographical and, here is the real danger, social, cultural, economic and political powerful oppression, exclusion and injustice violence and how they really trans-act on people’s disempowering experience of violence of all sorts. The thinking, beliefs, behaviors and affects of people are not magically created in their ‘subjective inner worlds’, but obviously relate to many interactions in the real and most often injust and agressive and violent social world, through policies and rules and finally single actors and life events. In my view the danger of CBT is to individualise and ‘family-base’ the thinking, feeling, beliefs and values which individuals… only share, learn and suffer in real life contexts which are shaped by powerful cultural and econimic politics and, nowadays, neo-liberalist individualist norms of behavior, activity, values and strategies of self-responsibilisation and economic professional achievements.

    Therefore I see a huge risk of highly educated professionals, taking for granted their styles of tinking and experiencing in self-controlled manners, which is totally related to their social classes and cultures norms, behaviors and powerful groups, to be given the power to conceive of, structure, stratagize and train peope with experiences of extreme distress, social injustice and its translation to oppressive life events who often come from wholly different real worlds. What if… collectively expressing and adressing their experiences would allow people ditressed from multi-layered injustice to reconnect with their real world contexts and create empowerment, social recovery and healing social group adherence in ways to express their experiences, needs, collective and cultural powers, claims and hopes. Well, here is just one example from a music project based in one of the most ethnically diverse and socio-economically disadvantaged boroughs of London, people with and without experiences of extreme distress (psychosisof all kinds) go on stage and voice their experiences, desires, fears and claims http://www.youtube.com/watch?v=Su2MU9GBUP4

    Back to the evidence-base, the scientific studies on CBT for psychosis. Even though ‘user involvement’ in research is politically prescribed, most often this has resulted in some powerless consultation invitations of select service users. In my view, had people with the experience of ‘living their lifes with voices and extreme beliefs’ decidedly collaborated in the trials of CBTp many changes would have been introduced:
    – respect for and learning about the ethnical and cultural (marginalised) groups the clients come from need to be acquired by ‘providers’ of CBTp
    – individualisation of experiences, thinking, feelings, values, beliefs, oppression, violence. abuse, exclusion were seen as ‘ignorant’ and need to be replaced by exploration of wider social, political, cultural and economic norms and legistlation and their transmission to stressful life events or chronic injustice and oppression, and to include option for healthy tinking and feeling and action related to the injustices faced in the real world and social groups – this could be done by mh professionals of diverse ethnic backgrounds, survivor peers and clients, so a call for group ‘CBTp’ (is that still CBT?)
    – learning to relate extreme distress experiences to interpersonal as well as social norms, beaviors, values and violence as a way of ‘meaningfully living with voices and other extreme experiences’ and to accept the meaningful role of distress-related extreme and unusual experiences
    – ‘positive symptoms’ reframed as meaningful responses to oppressive cultural norms and interpersonal injustice, neglect, abuse, violence, despair, exhaustion no longer seen as to be made disappear; therefore a decrease in positive symptoms can’t be seen as ‘benefit’ of few session-long CBTp. This may even be regarded as nonsensical as voices, thoughts, feelings and values are challenged in any kind of ‘treatment’, ‘therapy’ and is is to be HUMANELY expected and known to happen that voices and feelings become more vital when starting a new interaction (especially before trust can build).
    – ‘negative symptoms’ are to bee questioned critically too as the challenging and adressing of voices, beliefs, extreme experiences is stressfull to the people experiencing them and it is understandable they may need to be for themselves to figure out how to deal with all this new stuff coming up in sessions and fuelling their voices, visions, beliefs, experiences, just like anybody would react with strong feelings or critical and difficult thoughts when opening up, being assessed, being ‘trained’ to change ones beliefs by a powerful professional, most often from a totally diff cultural and social background

    THEREFORE I conclude that I find the conception of CBTp trials needs to be ethically and humanely challenged and needs a complete overhaul with regards to all the decisive ‘ingredients’ mentioned.

    HOW anybody came to expect that some 6-8 sessions of CBTp offered to a distressed person by a person from amentally, emotionally and culturally ‘alien?’ reality should make only the clients beliefs and voices ‘decrease’, ‘go silent’, ‘become obidient’ and the client be expected not have a need to be on his own to cope and digest (negative symptoms) for me is not a myth neither a miracle. It is based on the culturally and professionally accredited power of research designers of the CBTp trials to, it seems, mostly be ignorant of the real life experiences, emotional and intelligent ideas, struggles, values, beliefs, voices, visions, etc. of people diagnosed with psychosis.

    It may be the voice of my ignorance that I only know of the HEARING VOICES MOVEMENT with more than 300 groups/hubs/networks worldwide to have developed a different understanding of voice hearing and extreme experiences or beliefs based on collective sharing of experiences, knowledge of distress, oppression and abuse, acknowledgement of the meaningsful roles and different cultural values that voices, beliefs and extreme experiences can have in our real social and cultural worlds. As much as I welcome the familiarities in CBTp and some ingredients of Dialogues wit Voices, there are more crucial and promising differences. It is time to keep straight forward: In my opinion, it is the clinical and scientific communities who need to learn with and collaborate with people with unusual experiences, hearing voices and beliefs as social groups including an immense ethnic and gender, educational and cultural diversity (incl the cultures of living in the streets as we have little chairs and palaces) to be enabled to reframe the understanding of peoples’ extreme experiences and to create together learning approaches based on sharing of power and knowledges. INTERVOICE/ THE HEARING VOICES MOVEMENT and independent survivor conceived and peer led recovery initiatives and their organisations SAMSHA with NATIONAL EMPOWERMENT CENTER, PILLARS FOR PEER SUPPORT NATIONAL CONVENTION of ORGANISATIONs have enormous socially embedded and experience based knowledge to offer.

    ‘THE PERSONAL IS THE POLITICAL’, states Jacqui Dillon, chair of Hearing Voices Network UK. In my view we continue to fail and betray people if we do not collaborate on what to do together to make meaning making relevant to the real social worlds’ people act and suffer in, to relate to collective learning and the need for collective social and political action. CBTp is part of a treatment approach governed by individualist and cognitive paradigms from ‘operationalist experimental psychology’. It is therefore in great danger to be used as an instrument of indoctrination and injustified individualist disempowerment of often disadvantaged people in extreme distress or struggling to make sense … of what is more than their subjective lifes.

    This ‘pamphlet’ is written by a middle-class, white, female survivor. My own journey into benefit related poverty, coming together with people from diverse BME and cultural backgrounds (see the link to the music project) keeps challenging and teaching me. In my view people from middle class backgrounds can choose to play a role as long as we are aware how our ‘strengts’ and ‘capabilities’ , our (often) rationalist rigidity and suspicious individualism, which I blame weaknesses, are shaped by our social groups and different struggles with neoliberal oppressive and destructive politics, and how we can differently benefit from collective learning and solidarity and diversity in social action, especially in mental health systems and for the creation of severe distress related support and collective education. I think that it is for people blinded by the prisons and privileges of their own cultures and groups to want to learn from people with diverse and different experiences, and I am convinced this applies to us all. Measure our contributions to what each of us is challenged and invited to learn from other groups – cause the struggle against destructive corporate elites overrruling democracies and destroying social accountabilities basically brings us together.

    Individualist interventions separated from social collective activism and community work seem displaced with regards to the struggles but also the opportunities of people with experiences of severe distress and extreme ideations. Cause injustice, abuse, disempowerment is what takes place in the experiences of people with extreme distress; whereas the chance to learn about diversity as well as common challenges is what can empower for reciprocal, collective learning and common strategies for social recovery and social change.

    More a pamplet than a response. I am convinced we need the broader real life worlds’ context to be able to get what is happening, to be able to see and create understanding, learning and empowerment opportunities yet excluded from clinical work and academic research.

    Ute Maria Kraemer
    Anthropology Maitrise, survivor (privileged? and working without pay, so privileged?), currently MSc Mental Health Services Research education to work as a survivor anthropologist researcher later, research to be based in collective movements fighting for socially accountable democratic systems, and survivor movements claiming these rights and responsabilities

    • APOLOGIES for some typos in the first paragraphs and some mis-dis-placed words. The adventure of writing as a non native English speaker comes with some small linguistic pot holes for the reader. Nothing compared to… more extreme experiences challenges as how to understand… Regards Ute Maria Kraemer

    • Just one thought: I think that good psychological approaches may have an intrinsic problem – they are not easily scalable. The outcome of therapy will depend largely if not solely on how good the therapist is. Right now it’s being done by relatively small number of people who are dedicated and good at their jobs. I’ve met a lot of psychologists and I must say that very few of them have the intellectual and/or, for a lack of a better term, emotional capacity to do their jobs. I’m not sure how well you can train people to do it and how much it is rather some intrinsic ability of certain individuals to empathise and listen and help others to go through the experiences. That of course is not to say it should not be tried, just this is a very difficult thing to do.

  5. I am generally critical of CBT for a number of reasons. It is second wave behavioral treatment that was built on the foundation of Applied Behavioral Analysis (ABA), which is little more than a Pavlovian method to reinforce desired and accepted behavior while punishing unwanted behavior. CBT places the “blame” for the diagnosis squarely on the individual diagnosed, using terms such as “thinking error”. I personally find it disgusting to program an individual into making such a stupid and demeaning statement as, “I had a thinking error”.

    CBT has been around for a number of years, and has been discarded as a treatment for many “diagnoses” in favor of third wave behaviorism (DBT) and mentalizing by forward thinking clinical people, even within the mainstream. It is still widely popular, however, in community mental health centers as the treatment of choice for ANY disorder because of the ease of teaching the method to low level therapists who are largely inexperienced and unskilled. It has some short term efficacy, but, like simple reinforcement and punishment, the efficacy fades somewhat rapidly in the absence of the stimulus.

    Hearing Voices groups are state of the art with regard to alleviating the suffering of individuals who are experiencing unusual things, within or outside of a “diagnosis” of Schizophrenia. There is a great deal of research from Europe on these groups. More and more people in the states are also doing this kind of work as well. I am interested in hearing from like-minded individuals in Northeast Ohio who want to establish a true alternative to mainstream “treatment” for voice hearers and others who experience similar unusual events.

    Best Regards,

    Sharon Cretsinger, XLISW
    Kent Empowerment Center, Kent, Ohio
    [email protected]

    • I agree that CBT can be dry and carry a blame-the-victim connotation with it. The larger question is why does any therapy work for anyone? It seems that there are certain common denominators that are employed by effective therapists, regardless of the methods they use, that promote healing in clients. These denominators are almost certainly present in good support groups. Check out the centerforclinicalexcellence.com for research information about what makes different therapeutic approaches work for different people.

      • “It seems that there are certain common denominators that are employed by effective therapists, regardless of the methods they use” – you’re definitely on something here. I know quite a few psychologists and there is one, maybe two of them that I think are able to do their job effectively and it has nothing to do with the education or training they’ve received. In fact one of them is my almost life long friend and I know for a fact that she was helping lots of people to deal with their problems since at least high school. It comes with the personality, empathy, ability to listen, respect for others etc. That’s why I doubt if any one single technique can be adapted to treat people in distress or if it really matters so much – it’s more about the person who does it.
        One the more positive/constructive side: I think that the Open Dialogue approach seems like the most likely way to succeed, simply because it does not rely on the training or personal qualifications of any one individual: it is exactly what it’s name suggests – a dialogue, without anyone being in position of power or authority. It also targets the whole environment of the affected person, not only themselves which is largely ignored with other approaches (even if you talk about it – so what? – you may want to confront the problem with people who are sometimes at least co-responsible and not only dwell on your problems with a person who can’t really help you change them). To my mind it sounds like this is more likely to be effective on a larger scale than just individual psychotherapy. I find the idea (which seems to be very popular with psychiatrists/psychologists and also in at least some part of then genera public) that you’re solely responsible for your own happiness. If you’re not happy, if you hate your life – well, you have a problem, not your family, your friends, your colleagues, the society as a whole. Psychology tends to somehow ignore that we are a social species and you can’t fix all the problems of an individual by telling him/her they should change if they are not the only reason for the problem. Sometimes they are not a problem at all. Getting over your problems by forgiving is all nice and cool but some justice (or at least an occasional apology) would help it happen. If someone is abusing you, bullying or demeaning you and causing you to “go crazy” it’s somehow you’re fault for being weak. You get labelled, drugged, locked up and the person is usually not even being told off for that they did. Sometimes they even get public sympathy and support for being victims of your craziness.

        • Dear B
          What I found about CBT is that its possible to roughly describe a problem without going into personal detail and still get help.
          But in Recovery Fellowship, with a member I can talk about everything because the member is there for their own purpose and is on an equal footing (and I’ve heard everything anyway in recovery fellowship, nothing shocks).
          A bought and sold chemical Psychiatrist will work from a symptom list, and this approach is not in my best interest.

          • Well, that are my two big personal problems with psychology (I know that most people probably feel differently) which make me a helpless “client”:
            a) the fact that you’re supposed to talk about your personal life and feelings with a stranger who by the definition is not supposed to ever have any real life relationship with you (the only thing I can compare it with prostitution – it may sound unfair but it’s essentially buying human contact)
            b) it does not offer solutions to your problems – simply talking things through and getting some advice (which some people here described as comparable to an article from a woman’s magazine and rightly so) does not cut it
            I know there are all these different techniques and so on but really they all seem to me like much ado about nothing. I don’t mean they don’t help some people but personally for me it’s just a lot of bs. I feel like there are two kinds of problems in life: the ones that can be addressed in a constructive way (which I guess most people don’t need a psychologist to tell them what to do) and the ones that fall under the “life sucks” category. You either find a way to deal with them on your own, with time and social support or you just give in.
            Personally, the only place when I would like to see a psychologist is as a mediator between people involved in a difficult social situation: within the family, community, relationship etc. Someone that can bring these people together and give them a voice and allow them to have a dialogue and hopefully a solution.

      • Hi Mark
        ‘CBT can get you out of trouble’ I was told – for me this is better than Largactil. I see it as being a bit like Buddhism, as it takes a long time to get completely right, but results can be seen straight away.
        For example my ‘Emotional Reasoning or Catastrophising’ makes a lot of sense to me at the time, but outside of the emotions, I see things a lot differently and more effectively. This can be whether I get an electricity bill in the post, or whether someone in my workplace says they are going to ‘beat me up’ at the end of the day.
        I needed simple and straightforward advice when I came off strong medications as my ‘head was all over the place’. The Withdrawal Syndrome never really went away, but it was possible to compensate for it in the long term with suitable help.

        • hi Fiachra and B

          You both make interesting points. There is the individual and social component to recovery. I was using CBT in my recovery, especially when coming off of medication, before I even knew what to call it. I repeated certain Bible verses that spoke to my overwhelming feelings of moral guilt and my desperate need for grace. At the same time I was involved in a church community that encouraged and supported me. One of the members happened to be a psychiatrist who offered to help me get off of my antidepressants and antipsychotics. Choosing to change my thinking in a loving social context largely explains my sanity today.

          • My own experience! I’m in Recovery Fellowship all the time and I’ve had a lot of help from professionals (there for themselves), and everyone else.

  6. While talking with people who experience psychosis is better than drugs, I can’t help but be sceptical.

    Most times in the system, people are diagnosed and medicated first and foremost and, as stated in this article, they hardly ever get access to CBT or any other psychological therapies for that matter, including family and art therapy. If and when they do, they tend to be referred only when the drugs “have not worked.” This is what I have observed working in the system as a clinical psychologist for the past 25 years.

    Psychiatry and drugs are always the first line of defence (or offence) and people are forced via various means into taking them, often against their will. Let us be under no illusion – the system is deeply damaging and flawed, it is set up to serve the drug companies and psychiatry (and not the service users), with psychology and psychological therapies simply the handmaidens of these dominant forces. As a psychologist, I have often felt that my role is simply to prop up these pernicious industries. “When the drugs don’t work, refer to psychology” – presumably to make it look as though the drugs are working. The recent revised NICE (or still not so nice) guidance for “schizophrenia and psychosis” here in the UK still plugs medication, medication, medication. A pharmacist informed me that people are not allowed to take fish oils unless they are also on antipsychotics. This is a system based on injustice, oppression, forced drugging, profit before people and human rights abuse. If we are honest, we will admit this and work for change, rather than colluding in any way with the current and ongoing unjust status quo. Plus ça change, plus c’est la même chose! Until and unless we fight for justice, nothing will ever change.

    Schizophrenia: The ‘not so nice’ guidelines – what has changed since this commentary was written?

    http://www.critpsynet.freeuk.com/NICEcommentary.htm

    “Mental health services” or compliance service? – this is still very relevant!

    http://recoverynetworktoronto.wordpress.com/2014/04/08/mental-health-services-or-compliance-services/

    CBT, while better than drugs, drugs and more drugs, needs to be offered from the outset as a choice. CBT is not for everyone and there are some negative aspects to it. For example, it locates the problems within the individual, it can be patronising, over simplistic, over positive and promoted in an over-zealous way, it fails in some aspects to truly understand and honour the experience of people and to serve them adequately and appropriately.

    Annoyingly, it can also be espoused in an almost evangelical and fanatical way by its adherents and tends to have an over-inflated sense of its own efficacy and importance. It has gotten too big for its boots and tends to want to stamp on other therapies, which might be equally as effective but which have not had the massive injection of research and PR that CBT has. Let us be honest, it helps some people some of the time, or to be more precise, some aspects of it help some people, but it is certainly not a panacea!

    An industry has developed around CBT, which tends to be self-serving and self-perpetuating. The drug companies might not be directly involved, but there are certainly researchers, authors, clinicians, academics and “experts” who depend on CBT for their livelihoods. The books, the papers, the research, the conferences, the training courses… These are all linked to careers, professional prestige, money, power and egos.

    The real scandal is not what the title states, but that ongoing human rights abuse is allowed to continue in the name of “mental health care”. CBT does nothing to address this issue, it merely tinkers around the edges and pussyfoots around the main moral issues.

    The way forward is a radical shake up of the system. Eliminate the oppressive dominance of drug companies and psychiatry, make CBT and other psychological therapies more widely available and also – employ and involve more people with lived experience throughout the system, including in positions of authority. This is the only thing which is finally going to begin to shift the culture for the better, I believe.

    More honesty, humility and humanity are in order! Drug companies, psychiatrists and even CBT adherents/fanatics are not going to give up power willingly. But they will have to learn to share power and collaborate more meaningfully and effectively with the experts by experience, if we are going to really progress towards a more just, effective and inclusive system of care!

    • Yep— “people can and do recover from ‘mental illness.'” Fellow recovery voices and forums is good medicine and a reminder in numbers to counter the number of messages sent every day that “mental illness” is a biological illness removed from social contexts that can only be treated with drugs. You’re sick (you’re sick, you’re sick).

      Psychosis can be a critical step in recovery, which can just be the breaking down of false “truths” in the operating system coming apart so one’s own truths, which include others, can be accessed, acknowledged, and self-authorized. It doesn’t make one’s own experiences and account of one’s self irrelevant. It is one’s very own experience and it hardly gets more personal than that.

      Now that I’ve been psychotic or delirious or whatever, I’m not afraid of it; because all the fears that were in it were there all along and represented others’ pathology, not mine. In too many ways, people who are perceived to be or are labeled “mentally ill” are dealing with the unchecked powers of mad-making privilege and are too sensitive to ignore those realities or just too tired to support them anymore.

      Other times, it might just be a brain fever from any number of physical ailments, but neither should have the power to be defined as who and what a person is for the rest of their life. That’s just crazy.

    • Hi
      If CBT works, it means basic Psychotherapy or talking to people works. And this means the broken brain doesn’t exist and the medical model is a Fraud. If they admit to this, what would happen to them?

      Tranquillizers do work in the very short term, in the same way as paint fumes would.

      • Mad in the UK:
        After ‘100 Years of Schizophrenia’ there are now very good long term solutions i.e. The Talking Treatments (these were there 100 years ago as well), but these solutions are not to be used. Even though the system in place is very unsuccessful and it costs the UK billions.

    • Brilliant.
      I want more ideas how to connect user/survivor work, recovery and inclusion ‘political correctness declarations’, peers and survivors desire to organizational and cultural change to how make this ‘get real’. In my view more and more mental health professionals face related challenges in the gap between policy talk and restructuring of the NHW with new roles of commissioning and ‘out sourcing’.
      Adults with mental health problems do face the social exclusion from education and competitive job market and restauring their mental health can’t demand them to be blind to structural injustice and economic violations done to an ‘increasing majority’ of people. Nevertheless, the basic values of peer work and survivor activism are the ones of civil social change movements, therefore, is there real potention to support mental health in sharing information on both voluntary and ecudational opportunities but also information on the biography, history, and real world conditions of their respective groups, and, third, information on making contact with social activism groups who are based on shared collaboration and equity values?
      As individualisation in psy therapies is well aligned with general neo-liberalist closing down of social services and social institutions, there is no real social context and real social roles and goals to be found in therapies. However I have never met people set a ‘personal’ goal if similar ones exist as opportunities in the real social world people need to play their roles in. There is, in my view, no individualist way out of patient-dependency role! There must be a mes-osocial and jobs/roles/careers real world context for people to re-connect and take up socially transfered responsibilities. Individual self-responsibilisation is a non-sense idea, one responds, so social actors and structures are the necessary condition for responding and being responsible for. No ‘personal recovery’ and getting an active social live which is not dependent on the real social context. And lots of drugs and addictions do not have to do with individuals vulnerability or ’caused’ by abusive upbringing, but with social dicrimination, exclusion, oppression and being rejected from social existence, so being negated adulthood.
      I’d like to know how the WRAP groups and the Recovery Colleges adress this issue.

      • “As individualisation in psy therapies is well aligned with general neo-liberalist closing down of social services and social institutions, there is no real social context and real social roles and goals to be found in therapies. (…) Individual self-responsibilisation is a non-sense idea”
        You nailed it. But that idea is extremely popular, it as been internalised by the vast majority of the population to the point of becoming and axiom. I have heard it from a lot of people “everyone is responsible for themselves”, “your happiness depends only on you”, “if you are lonely it is because you are to needy for others: learn to love being alone and it will change” etc. There is the notion that you’re only the valuable member of society if you’re happy and don’t need anyone else. As if somehow social needs could only be fulfilled if you got rid of them altogether. There is an internal contradiction in it (if I’m happy myself why the hell should I want to come back for social contact and love) but it’s a perfect line of thinking if you want to blame someone for their unhappiness. It a selfish, individualistic idea that has nothing to do with human nature but it is useful for people who don’t want to admit they have any responsibility towards others or face the realities of life.

  7. Therefore I see a huge risk of highly educated professionals, taking for granted their styles of tinking and experiencing in self-controlled manners, which is totally related to their social classes and cultures norms, behaviors and powerful groups, to be given the power to conceive of, structure, stratagize and train peope with experiences of extreme distress, social injustice and its translation to oppressive life events who often come from wholly different real worlds.

    It is time to keep straight forward: In my opinion, it is the clinical and scientific communities who need to learn with and collaborate with people with unusual experiences, hearing voices and beliefs as social groups including an immense ethnic and gender, educational and cultural diversity (incl the cultures of living in the streets as we have little chairs and palaces) to be enabled to reframe the understanding of peoples’ extreme experiences and to create together learning approaches based on sharing of power and knowledges.”

    I agree. What to do with these people who know so damned much? In my experience, they were anything but “highly educated”, they were very specifically and technically educated.

    When I was in my first lock-down room, the nurse was walking around and talking real loud about me as if I weren’t there. She was sure I was on meth and was “calling it”. She told me I didn’t have multiple sclerosis. I remembered, at that time, reading about a study done in a mental ward showing that almost every time patients got upset, the staff and/or visitors had done or said something to the patient that would upset anyone. I had taken the mattress off of the ugly berm that was to be a bed and put in on the floor ina a corner of the room, in front of the door. It seems a trained person should have recognized hypervigilance and should have made an effort not to behave in a threatening manner.

    The woman who came in with the clipboard and who kept pushing drugs while I was taking inventory of what had just happened to me and the historical realities that I was feeling so intensely, did not even introduce herself or attempt to make eye contact. She sat down in front of me with a clipboard and looked at her clipboard while going through a checklist, starting with questions about my childhood that had absolutely nothing to do with where I was at. I thought about all the times counselors had related current events that had no relationship to my childhood to my childhood and it was one of those ‘if all you got is a hammer’ situations. I got the records afterward and saw that she had made a note that I had a service connected disability—I had a veteran’s I.D. that said as much, so that was a no-brainer—- but she didn’t think it was from what I said it was from. It was and is, and that was exactly what my whole episode was about. But she was quick to assume that I was deluded about the content of my psychosis that she hadn’t the slightest curiosity about, and that I was deluded about my service connected disability.

    The “art therapist” kept grimacing at the collages I was making about my trauma and everything I was thinking about it while doing my own thearapy. She would rather I had a cut out pictures from a woman’s magazine about what advice of their’s I was going to take to “help myself”. I have 60 completed hours in studio art coursework and understand the processes of using art for self-exploratory purposes, thank you. And I did, for hours every morning, before everyone was up, I contemplated and reevaluated the content of my psychosis and every related issue. It was very productive psychological work that included experiences in the military that were very positive.

    They also all appeared to be completely unaware of their own affect and had a tendency to overreact to the simplest situations. And told every friend and family member of current patients that all their questions could be answered at NAMI.

    It was all so patently transparent, and the ‘f’amily dynamic’ was palpable. Better pretend that they’re helping you— they can keep you for 180 days is they want, you know. Say, “You can’t keep me here until I agree with you— Threat to self or others.”, and watch how dangerous you become.

    “CBTp is part of a treatment approach governed by individualist and cognitive paradigms from ‘operationalist experimental psychology’. It is therefore in great danger to be used as an instrument of indoctrination and injustified individualist disempowerment of often disadvantaged people in extreme distress or struggling to make sense … of what is more than their subjective lifes.”

    They need to stop assuming that they’re smarter, better educated, more attuned, and know what the patient needs better than the patient does. On a personal note, I’d like mental health professionals not to tell me what psyche drugs their on and what it does for them. That’s just creepy.

      • One more note: this is exactly why the Open Dialogue may be such a great approach – it is based on the fact that not one of the people who sit in the room, including doctors and nurses, is an authority and knows better.

        • Open Dialogue sounds like it involves a kind of humility and straight forward approach to a person in crisis that is too “soft” by American standards, for insurance companies and “experts.” I trust that it takes special training and self-awareness that does not encourage practitioners to believe themselves to be in control of a situation and so expert that they should act without question. That does require intelligence, patience, and real skills in listening and self-control for most people.

          The most striking difference to me between psychiatry now and psychiatry when it helped me in real and deeply meaningful ways that empowered me, is listening. The biological approach has made the profession deaf. Sure, there are exceptional psychiatrists, but they’re so exceptional that most people should not expect to meet one.

          Wasn’t there a time when lawyers and psychiatrists were required to give a free initial consultation? Having to spend money to find a psychiatrist you want to work with is prohibitive. I could tell that I didn’t want to spend a lot of time with most of them in the the first fifteen minutes of the first meeting— especially those who appeared to be wearing a Prozac mask or were haughty. If I had had enough money to play ‘shop for a psychiatrist who looks like they’re actually there and looks at me like I’m also there,’ I probably would have taken a vacation and traveled, instead of knocking myself out treading water while working full-time, being most fearful of not being able to work and ending up homeless.

          My savings is the best anti-anxiety drug I’ve ever used. As a woman especially, being financially insecure is a nightmare. Being unable to work is an identity crisis— I LOVE to work. I really do believe that most working poor people are properly insecure from their realities. The U.S. is a mean place for poor people. The prospect of ending up on the streets is horrifying, especially for people (most often women) with children. It’s not being sick or not having enough ‘resilience’ to fear the worst in our country when you don’t make a living wage. Psychiatrists and other middle-class professionals might want to ask themselves why more Americans aren’t more anxious.

    • Wow, that’s pretty much exactly my experiences. I also totally sympathise with: “I thought about all the times counselors had related current events that had no relationship to my childhood to my childhood”. I went through the same: the guy constantly tried to imply there was something wrong with my childhood, my parents must have been abusive etc. When I refused to admit any of that because it was all bs, he turned around to “well, then they must have loved you too much and did not teach you discipline”. Wow, that’s a catch 22 for ya. In the end I came up with one single potentially traumatic even from my early childhood, which was related to hospitalisation (I actually know it was traumatic since I have a panic reaction to blood taking since then). I thought he’d jump on that but he just said “no, that can’t be it. Let’s go back to your parents”. That was the last time we spoke. I think that the reason why he ignored it completely was because it involved doctors (not even psychiatrists in that case) – a sacred profession that can never be blamed.

  8. @ wileywitch
    sharoncretsinger
    Helen
    Mark Sullivan
    B

    Thank you every one for sharing your ideas and perspectives!

    Expert by Experience peer support, reciprocal and deeply motivated learning, sharing and trying ‘felt roles’, building understanding on characteristic features of traumatising disruptues, mental and emotional expeditions of extreme nature, as well as creative, empathic, strategic, social competencies, there is much of unique insight, compassion and getting real that peers in recovery can offer. There is a reason we do not refer to our support as ‘cognitive behavioral’. See how our ‘principles’ differ: Respect, equality, mutual responsibility, tolerance of diversity, acceptance of extreme altered emotional and mental experiences while addressing the distressed person with utter dignity, creating safety through peers being attentive and present with honest resonance, being real as an individual, in my view qualify as embodied and respectful interpersonal welcoming and basic human validation. I still think that Shery Meads trauma informed IPS is invaluable to me. So thanks for sharing your support for peer recovery communication.

    I like this quote from a Dutch peer run recovery programme:
    ‘To gain confidence with your own strengths and then develop and expand them, one needs experiental knowledge. … All these individual stories together form collective experiental knowledge: knowledge how it is to live with mental vulnerability and its consequences. … On an individual (interpersonal/group) level it helps empower fellow sufferers in their quest for their own strenght/s. On a higher level it paves the way for user (consumer/survivor) influence in improving mental health services.’

    What I appreciate in facilitated peer recovery groups is that there is not one expert with mystique higher knowledge and psycho-power; there is not one who owns the ‘right knowledge’, the ‘being the normal role model’. I belief this absence of authority in ownership and leadership is crucial. Its replaced by a shared WE, you and you and you, space, by dialogues owned and made by all, by travelling thoughts, feelings, real experiences which people can feel, try on (if I may say so), with dialogues created together, you and me and you and we, and this creates real people learning. Powerful cause no one has THE power, but everyone empowers and takes home shared ME-power.

    So yes, peer recovery groups are such a wonderful healing ‘innovation’ : cause historically it is new,people can now come together from all kind of ethnic and educational backgrounds, ages, genders and transform disadvantages in mutual empowerment. I always wonder how magic it is that loving some feelings or ideas in other survivor peers so much opens my own being to feel and like and belief in myself, cause I do not need to be ‘normal’, I am deeply liking some awesome qualities in my peers and this also transforms my heart and my mind, so I can believe in them but also in myself. Seeing peers talents and strenghts with being far from the ‘normal perfect illusion’ and deeply loving them for wonderful qualities, gave me my capability to re-like myself and even re-love something in myself – such a deep power from their heart to mine. Well, one day I will hopefully write about these kind of experiences and qualities which are unique to peer recovery groups <3

  9. Unfortunately but of course, this is to be expected, that CBTp is to be ignored while drugs are pushed on people. There are several reasons for this, but the major ones are that 1) Big Pharma can’t cash in on CBTp, 2) the authorities are more interested in controlling the “patient” than in helping the “patient” live a better life, and 3) drugging people is cheaper in the short run than helping them work out their problems through CBTp.

    This is an appalling and criminal way to treat people, as objects of social control policy rather than as full human beings worthy of the best help available for them. As Kant said of the universal moral law, the “Summum Bonum,” “Always treat humanity as an end in itself, and never as a means only.” Drugging people to control them, especially when there are better and more humane means available, is a violation of that fundamental moral law.