It is well recognised that antipsychotic treatments impact the whole body, not just the target area of the brain. For people with refractory schizophrenia on clozapine, the gold standard antipsychotic treatment in England and Australia, the separation of mental and physical regimes of health is particularly pronounced, resulting in multiple, compartmentalised treatment registers. Clinicians often focus on the mental health aspects of clozapine use, using physical indicators to determine whether treatment can continue. Our observations of 59 participants in England and Australia over 18 months revealed that patients did not observe this hierarchisation of mental treatments and physical outcomes. Patients often actively engaged in the management of their bodily symptoms, leading us to advance the figure of the active, rather than passive, patient. In our paper, we do not take the position that the facility for active management is a special one utilised only by these patients. We seek instead to draw attention to what is currently overlooked as an ordinary capacity to enact some sort of control over life, even under ostensibly confined and confining circumstances. We argue that clozapine-treated schizophrenia patients utilise the clinical dichotomy between mental and physical domains of health to rework what health means to them. This permits patients to actively manage their own phenomenological ‘life projects’ (Rapport, I am Dynamite: an Alternative Anthropology of Power, Routledge, London 2003), and forces us to reconsider the notion of clinical giveness of what health means. This making of one’s own meanings of health may be critical to the maintenance of a sense of self.
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Despite training as medical physicians, an ongoing pressure for psychiatrists, formally known as medical ‘alienists’ treating the socially estranged and incarcerated, is to legitimise the profession in strict ‘scientific’ terms (Bhugra 2014). There is a preference for neuro-psychiatry over social-psychiatry, and pharmaceutical therapy dominates personalised therapy (Bhugra 2014).
The introduction of second-generation or ‘atypical’ antipsychotic drugs dissociated ‘anti-psychotic’ efficacy and extrapyramidal side effects (movement disorders), which otherwise marked the efficacy of first-generation ‘typical’ antipsychotics (Meltzer 2010).
20–40% of schizophrenia meet this criteria for ‘treatment-resistant schizophrenia’; when psychotic symptoms are not changed after at least two trials of different anti-psychotic medications (Lambert 2010).
First available to schizophrenia patients in Europe from 1971, in 1975 clozapine was retracted from clinical use for over ten years in response to 8 fatalities in Finland, due to clozapine induced blood count complications (agranulocytosis, with 16 cases of neutropenia) (Amsler et al. 1977). Subsequent and closely monitored trials of clozapine treatment for schizophrenia saw its’ clinical reintroduction after a more conclusive study by Kane et al. in 1988 suggested that blood and heart risks could be managed via frequent blood count monitoring.
Clozapine monitoring guidelines are distributed by, and all blood results must be recorded via, a Clozapine Patient Monitoring Service (CPMS), an online database.
All diagnoses meeting the F20 criteria of the ICD-10 classification manual (WHO 1993), and all patient participants were aged between 18 and 55 as was required for ethical clearance from the NHS Health Research Authority.
Ethics approval was granted by the Australian National University HREC (2014/420), the NHS Health Research Authority (15/WA/0151) and ACT Health HREC (ETH.9.15.166).
Voice hearing can be indicative of a variety of mental illnesses but alternatively benign if culturally appropriated; clinical interpretation depends on cultural context (see Jenkins and Barrett 2004; Laroi et al. 2014). In this clozapine-treated schizophrenia context, voice-hearing indicates a persistent symptom of schizophrenia.
A further division in clinical treatment domains is between the ‘positive’ (‘psychotic’) symptoms of schizophrenia and the ‘negative’ symptoms (pertaining to the apparent loss of emotional life), which often appear to go unresolved under antipsychotic regimes (Milev et al. 2005). Clozapine appears to alleviate negative symptoms more so than alternative anti-psychotics, however evidence of clozapine’s efficacy is largely in regards to positive symptom alleviation (Meltzer 2010). Further comments on this are beyond the scope of this paper.
In binding to dopamine receptors, clozapine is metabolized by the same catalytic enzyme induced by tobacco; smokers treated with clozapine may require twice the dose of clozapine, when compared to non-smokers, to achieve similar blood levels of clozapine—and abrupt smoking cessation may result in ‘clozapine toxicity’ (Prior and Baker 2003).
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The first author thanks her research participants and Dr Emilio Fernandez-Egea (University of Cambridge) for providing additional supervisory support.
Conflict of interest
While not directly funding this study, Ms. Brown is supported by the Australian Postgraduate Award (J.B., APA 1183a/2010). However, Ms. Brown and A/Professor Dennis declare no conflicts of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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Brown, J.E.H., Dennis, S. Actively Negotiating the Mind–Body Divide: How Clozapine-Treated Schizophrenia Patients Make Health for Themselves. Cult Med Psychiatry 41, 368–381 (2017). https://doi.org/10.1007/s11013-016-9517-4
- The ‘active patient’
- Medical ethnography