It isn’t easy coming to a point in your career where you begin to question widely held beliefs about the nature of mental illness, and how it should be treated. Indeed it becomes starkly obvious that, no matter what you think and believe, even know in your heart to be true, the world runs along different lines. Sometimes I can be full of hope for change, but frequently it angers and frustrates; often I am rendered melancholic by the mountain that lies ahead. Let me explain.
These days I work in a psychosis rehabilitation clinic. In the patients’ notes I read these opening lines, repeated, through the years, like a mantra, “this x year old person suffering from schizophrenia.” I question each and every diagnosis. I almost feel fallacious telling you that, these days I’m not sure such a unified entity as schizophrenia exists. If I ask the right questions, follow the patient’s narrative carefully, it usually becomes apparent that many of the people attending the clinic, even the most chronic, have had traumatic childhoods or other traumatic experiences, many of which have never been addressed.
These experiences receive scant-mention in the notes. It is also quite common, when asking about the circumstances of the illness’s onset, to discover a time of great upheaval in someone’s life; be that relationship crisis; problems at work; or more often than not, a combination of severe life events, where coping mechanisms fall apart. Many mention a period of sleeplessness before the onset of psychotic symptoms. Alcohol or drug use are usually not far away. The person gets admitted to hospital, eventually goes home, decides to stop taking the drugs, relapses… and so the wheel of psychiatry turns. Eventually they get a diagnosis like schizophrenia or schizoaffective.
The diagnosis, of course, sticks, and all future behavior is interpreted in the light of that diagnosis. For example I come across descriptions of typical negative symptoms of schizophrenia. When I meet the patient I see someone desperately overmedicated or painfully full of shame. I often ask the patient if they think they have schizophrenia. I’m still surprised by how many say they don’t. This is usually recorded in the notes as evidence of lack of insight. I, on the other hand, see they frequently understand quite well, the origins and course of their own suffering.
It seems that the central aim of the whole enterprise of psychiatry is to get to the right diagnosis, thence to the right treatment. To get to the right diagnosis, one has to believe, at some level, in the actuality of the diagnosis, i.e. that the cluster of symptoms designating schizophrenia, has some underlying biological substrate. Why else would getting to the right diagnosis be important? Arthur Kleinman in his seminal Rethinking Psychiatry mentions McHugh and Slavney (1986), senior psychiatrists at an American medical school who describe psychiatric diagnoses as naturally occurring phenomena that can be observed and mapped in the same way a scientist observes ‘the stratigraphy of mountains, the structure of a cell, or the forms of diseased arteries, rashes and cancers.’
Readers of Mad in America will, however, be familiar, with an argument, well supported by evidence, which in actuality suggests: The diagnostic categories used today were cobbled together by a committee who had more conflicts of interest than you could shake a stick at; and despite decades of searching, no responsible gene, no replicable brain abnormality, no abnormal neurotransmitter has been found. Indeed, much of the pathology of schizophrenia being described appears to result from the iatrogenic effects of medicine. The image of Pooh and Piglet following their own tracks in the snow whilst hunting the Woozle comes to mind.
On the other hand, the evidence has been piling up for social etiological factors, not least of all, the experience of trauma (Varese et al, 2012), being behind psychosis. Bebbington et al (2004), for example, in a large survey found those suffering from psychosis, three times more likely to have been abused as children. This has been widely replicated. There is also demonstrated evidence of a dose response effect, with a much greater association for children being multiply traumatized (Larkin and Read, 2008). Richard Bentall (2010) has talked about conventional psychiatry’s convoluted attempts to explain this data away.
Likewise, in discussing this with colleagues, I’ve been confronted with some odd ideas. Some make a distinction between, what gets called, a process psychosis on the one hand and schizophrenia on the other. Others suggest only sexual abuse leads to psychosis, which certainly doesn’t fit with the evidence, though in my experience, child sexual abuse and severe bullying seem to be particularly potent. Others claim the ones who suffered from abuse aren’t schizophrenic but dissociative. It doesn’t take a great leap of imagination to see, at the very least, there is considerable overlap, at the phenomenological level, between dissociation and psychosis. I could go on.
The point is, nothing is very clear when you go looking for something that doesn’t have any valid, objective existence. To my mind the only thing that can save this situation is to stop looking for this fictitious disease and start from the person’s experiences. Jacqui Dillon, chair of the UK Hearing Voices Network, in a presentation I heard her give, put it like this: The important question is not, what is wrong with you? But rather, what has happened to you? It may well be that trauma doesn’t always lie behind psychosis, and certainly not all trauma leads to psychosis. There is huge variance. I believe, only by taking an approach, which isn’t focused on getting to the right diagnosis, will we be able to map the many pathways both into and out of psychosis. It may be, that one day we will be able to describe a cohort of people for whom the classical description of schizophrenia holds true, but I am not holding my breath.
When it comes to psychosis care and treatment there are good examples of non- or low medication interventions. I wasn’t long into my reading before I came across Open Dialogue. If one searches Finland + Psychiatry through Google, the first things to come up are about Open Dialogue. Let me first dispel any myths that Open Dialogue is widely practiced in Finland. It isn’t. When I first read about it I was amazed; here is Finland with a well-organized and, seemingly, effective family therapy intervention for early psychosis, yet one, which seems most remarkable, by its absence in local clinical discourse. I also became angry. Why had I never heard about this? In all my years of training, alternatives like Open dialogue or Soteria got scant mention or were quickly glossed over.
This will give you an idea of the prevailing hegemony of mainstream psychiatric education. Why wasn’t this more widely available or recognized in Finland? With outcome studies like these, you’d think that professors and politicians would be falling over themselves to investigate further and validate the studies. As a politician, wouldn’t you see the potential for this to save the state money, through better functional outcomes and getting people back to work? Wouldn’t it be possible, with a bit of investment, to make Finland the world leader in psychosis care, as it is with education?
In trying to answer some of these questions I have learned that there are other places in Finland where Open Dialogue is happening, but Keropudas hospital in Tornio is probably where it is best established, researched and consistently practiced. Indeed, withinin our local early intervention psychosis service there is access to Open Dialogue but it comes alongside a big package of other interventions. I have heard through a colleague, who attended a meeting, where the outcome studies were first presented, that on being invited to comment, psychiatrists stood up and said that it was unethical to withhold psychiatric drugs because we now know schizophrenia is a brain disease. This is, of course, hearsay but it wouldn’t surprise me if it were true.
I have had the privilege of hearing Jaako Seikula talk on two separate occasions in medical conferences. I liken it to hearing the sound of running water in a desert. On both occasions he concluded by saying that, in his experience of working with families and psychotic patients, he has come to the conclusion that “Love is the force.” How often do you hear that in a medical conference? I find it profoundly moving. At one of the meetings where Jaako Seikkula spoke, there was a prominent Helsinki professor of Psychiatry also presenting.
My question to him was this: Why isn’t there more investment in Finland in Open Dialogue, even at the level of further research? He could only reply that there wasn’t enough money around to fund this sort of research. I’m not entirely convinced that this a money issue. I think it has more to do with political will. I have noted the growing interest in Open Dialogue outside Finland of late, with many training opportunities being organized in the UK, as well as Mary Olson’s and Sandra Steingard’s, (amongst others’) work in the USA. I can see Open Dialogue spreading around the world before being taken up properly in Finland.
Within psychiatry the biggest obstacle to change is the prevailing biological dogma, which is so pervasive. It extends to all areas of our lives. The media often discusses these issues unquestioningly, and as a result everyone ends up believing in this discourse of disordered brain chemicals and brain diseases. I’ve had friends and relatives look slightly aghast when I suggest there is not a shred of evidence for the chemical imbalance theory. Social security systems and health insurance premiums are built on this model, where different diagnoses attract different tariffs.
Pharmaceutical companies have a vested interested in promoting this model and are some of the most successful and influential companies in the world. The share prices of big pharmaceutical companies help keep the global economy propped up. They use their money and power to influence research, doctors, academic journals, the media, governments and ultimately consumers. However wrong at the moral and epistemological level, I can’t see the whole bio-psychiatric enterprise rolling over and letting us tickle its tummy any time soon. So it may be some time before a more enlightened view of psychosis becomes mainstream and Open Dialogue comes home to roost.
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Bebbington, P. et al. (2004). Psychosis, victimization and childhood disadvantage: Evidence from the second British National Survey of Psychiatric Morbidity. The British Journal of Psychiatry, 185, 220-226.
Bentall, R. (2010). Doctoring the Mind. Penguin Books. London.
Kleinman. A (1988) Rethinking Psychiatry. Free Press. New York.
Larkin, W & Read. J (2008) Childhood trauma and psychosis: Evidence, pathways, and implications. SYMPOSIUM: VIOLENCE AGAINST CHILDREN AND WOMEN. Vol. 54, issue 4, 287-293
Varese. F, Smeets. F et al (2012) Childhood Adversities Increase the Risk of Psychosis: A Meta-analysis of Patient-Control, Prospective- and Cross-sectional Cohort Studies. Schizophrenia Bulletin. doi: 10.1093/schbul/sbs050