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Relegating Psychosis: Blood Work and “Routine Connection” in the Clozapine Clinic

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Abstract

This paper attends to the sociality available in the clozapine clinic regimen and suggests that the social dimensions of clozapine treatment may be as important as the biochemical efficacy of clozapine. The clozapine clinic is where people diagnosed with chronic schizophrenia who take the antipsychotic clozapine go for routine monitoring of clozapine side effects, particularly haematological effects. Psychopharmaceutical treatments are often criticized for being reductionistic and dehumanizing, but clozapine clinics offer increased clinical contact in the age of deinstitutionalization. The inadvertent social benefits of biomedically reductive treatments have not previously been ethnographically attended to in the clozapine-only context. Drawing on 18 months of ethnographic fieldwork with 43 clozapine clients and 16 clinical caregivers in two clozapine clinics in the United Kingdom in Australia, I argue that routine clinical attachments in the clozapine clinic can serve a therapeutic role in terms of providing opportunities for clients’ health agency, social competence and accountability. This socio-therapeutic quality appeared to be available because the clinical emphasis was not on psychotic illness. It depended, however, on reliable and familiar social exchanges inside the clinic and on the predictability of clinical activity. The importance of unemotional but unfailing relationships and rhythms in the clozapine clinic context echoes cross-cultural findings about how schizophrenia is managed more productively in environments that invite more neutral and equal social exchanges.
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
1
Abstract
This paper attends to the sociality available in the clozapine clinic regimen and suggests that
the social dimensions of clozapine treatment may be as important as the biochemical efficacy
of clozapine. The clozapine clinic is where people diagnosed with chronic schizophrenia who
take the antipsychotic clozapine go for routine monitoring of clozapine side effects,
particularly haematological effects. Psychopharmaceutical treatments are often criticized for
being reductionistic and dehumanizing, but clozapine clinics offer increased clinical contact
in the age of deinstitutionalization. The inadvertent social benefits of biomedically reductive
treatments have not previously been ethnographically attended to in the clozapine-only
context. Drawing on 18 months of ethnographic fieldwork with 43 clozapine clients and 16
clinical caregivers in two clozapine clinics in the United Kingdom in Australia, I argue that
routine clinical attachments in the clozapine clinic can serve a therapeutic role in terms of
providing opportunities for clients’ health agency, social competence and accountability. This
socio-therapeutic quality appeared to be available because the clinical emphasis was not on
psychotic illness. It depended, however, on reliable and familiar social exchanges inside the
clinic and on the predictability of clinical activity. The importance of unemotional but
unfailing relationships and rhythms in the clozapine clinic context echoes cross-cultural
findings about how schizophrenia is managed more productively in environments that invite
more neutral and equal social exchanges.
Key words: clozapine treatment; schizophrenia; health agency; moral agency; social
defeat
Introduction
Dan preferred social interactions that were as predictable as possible. He explained to me that
his “paranoia” increased with the level of social exposure; that his “psychosis” might come
back if “ideations of reference via interaction with people goes up. In the lead up to being
diagnosed with schizophrenia ten years ago, Dan had been staying up late reading politics and
philosophy, smoking marijuana, and becoming increasingly concerned by the state of the
world. He began talking to himself out loud about various issues. He then started hearing his
own words repeated back at him through the television, radio and finally his family members.
He concluded that he was under surveillance. Since taking the antipsychotic drug clozapine,
Dan no longer felt watched, although he worried that the feeling would return. He avoided the
internet, free-to-air television, radio and most people, just in case. He became my research
participant at the clozapine clinic because, he explained, “I’m not the only one in your study
and being an anonymous data point is good.” I interviewed him on four occasions, as well as
sitting in on his monthly clozapine check-ups during my fieldwork. He told me that he never
felt paranoid in the clozapine clinic. He described the clozapine regimen as, “my only routine
connection to the outside world.
By the time of my second fieldwork visit, I had not seen Dan in ten months. The two regular
clozapine nurses who had also participated in my study had left their jobs. No permanent
position had been filled, and the nurse covering temporarily did not conceal her wishes not to
be there, nor that she was unfamiliar with the monitoring regimen. When it was Dan’s turn for
check-up, he wrote on piece of scrap paper that he had lost his voice. He instead nodded or
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
2
shook his head to the routine questions that accompanied his blood results. When she asked
whether he currently smoked cigarettes, he gave a more pronounced nod. He then held up his
bottle of Coke Zero, high in the air, as evidence of further consumptions to account for. While
the nurse was entering this information into the clinic database, Dan glanced over at me and
we exchanged wry smiles, because he and I had spent much time the previous year talking
about his consumption choices. We had arranged a time to talk again the following week. But
I received a text message from him later that day, apologising that he would likely have to
cancel our interview because: “I just don’t feel like speaking 2 [sic] anyone (except random
cashiers). He clarified, “I don’t mind communication non-verbally.I replied to say that I was
happy to communicate non-verbally if he wanted to. We ended up doing a somewhat
unconventional interview the following day; I asked him questions and he wrote down his
answers.
Most of our conversation contemplated what it meant to be alone or with others. He wrote that
he felt at his best “when I am without expectations and unobserved”. We discussed the
difficulties with social rules. He wrote, “I am not good at speaking right.” I asked him about
talking to health professionals about this, and he wrote:
Personally, I feel any method or dialogue I could have with another person, I could
confront within myself I feel it’s a process I can do, maybe feel more comfortable
doing, by myself … To quote the Chuang Tzu, ‘a pheasant in a cage, although it may
be treated really well, would still rather be free and without the cage’s luxuries.’ It’s a
hard problem to resolve, but if there were a med or therapy that could help me not, or
make me not, bothered by ‘the cage,’ I would take it. To change my capacity for, to be
able to perform socially.
For Dan’s sake, I tried not to encroach too much on the safety he felt in silence. Aside from the
content of my questions, I treated this like an exchange he might have with a shop cashier. He
broke his silence briefly at the end to thank me for understanding. I then became the next person
to leave the clozapine clinic circuit, or ‘cage,’ and to never see him again.
…..……
This paper attends to the sociality available in the clozapine clinic regimen and suggests that
the social dimensions of clozapine treatment may be as important as the biochemical efficacy
of clozapine. The clozapine clinic is where people diagnosed with chronic schizophrenia who
take the antipsychotic clozapine go to have haematological side effects and health concerns
monitored.
1
If not monitored carefully, clozapine treatment can be fatal, however it alleviates
psychiatric symptoms and suicidal ideation more than any other antipsychotic drug (Meltzer
2010; NICE 2014). The vast majority of clients I met told me that clozapine treatment had
indeed saved their life no matter its side effects. At the clozapine clinic, blood counts are the
primary physiological markers that determine whether clozapine can be continued, based on
signs of infection (low white blood cell count), ‘therapeutic’ dose certification, clozapine
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
3
toxicity, and patient compliance (plasma levels are evidence of consumption). Blood results
are entered into national online databases, which also distribute clozapine monitoring
guidelines.
2
In entering the monitoring regime, clozapine clients at first have their blood tested
three times a day, tapering out to a minimum 28-day cycle (and clozapine clinic visit)
thereafter. Even when the blood work does not happen on site, clients are required to attend
their local clozapine clinic each month to have additional health checks and collect their
clozapine. For many clinically stable clients like Dan, this can constitute the “only routine
connection to the outside world.” Given that engagements with biotechnological interventions
are progressively happening in non-clinical settings (Biehl & Moran-Thomas 2009:273), the
clozapine clinic is exceptional in offering increased clinical contact in the age of
deinstitutionalisation.
The significance of blood work and the inadvertent social benefits of clozapine-only treatments
have not yet been ethnographically attended to in the context of treatments for chronic
schizophrenia. While acknowledging the worth of psychotropic medications, insofar as they
facilitate sleep and some relief of symptoms (Good 2010), the treatment services that
accompany psychopharmaceuticals are often criticized for being reductionistic and
dehumanizing (Whyte et al. 2002; Kleinman 2010:88; Brodwin 2011). Jenkins (2015:95)
posited that ‘treatment that is primarily or exclusively biomedical, focusing on symptoms and
psychotropic medications, is not only reductive but also counterproductive in that it fails to
acknowledge and support an active struggle in which persons have the capacity to develop
strategies for living.’ Yet, in order to thoroughly account for psychopharmaceutical efficacy
and detriments beyond issues of reductionism (Schlosser & Ninnemann 2012:8), we can look
to clinical encounters around drugs like clozapine. As Bromley (2019:111) has noted, when
anthropologists describe what happens in present-day psychiatric clinics, considerations for the
more nuanced ‘amalgam of help and harm’ is easily overlooked. While it may be the case that
formal service delivery efforts are largely void of the ‘small, creative efforts to help people
connect with who they are’ and to ‘find a sense of social value’ (Hansen 2019:85), we must be
careful not to dismiss what is helpful under formal provisions. To explore how agency and
sociality operate when they look at first to be least available, I conducted 18 months of
fieldwork between two government-run clozapine clinics in Australia and the United Kingdom.
My data includes 130 audio-recorded interviews with 43 clozapine clients, diagnosed with
‘treatment-resistant schizophrenia,’ and 16 clinical caregivers.
3
All relevant demographic
information for client participants is summarised in the Appendix (Table 1).
The pressing cross-cultural evidence that biomedical treatments for schizophrenia are not
associated with better outcomes may at first render my exploration of social aspects to
pharmaceutical monitoring objectionable. Societies with less access to biomedical resources
appear to experience less ‘severe’ symptoms and greater ‘recovery’ rates (e.g. Good 1997;
Jenkins & Barrett 2004; Hopper 2008; Luhrmann 2007; Luhrmann & Marrow 2016).
4
Yet, at
least part of these cross-cultural differences can be explained by people in less biomedical
contexts not being as socially defined by their illness and experiencing less ‘social defeat’
(Hopper 2008; Luhrmann & Marrow 2016). Social defeat refers to circumstances where
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
4
‘individuals have repeated social interactions in which they subjectively experience failure’
(Luhrmann 2007:151); wherein ‘one does not really belong or measure up’ (Hopper 2008:209).
Cultural differences around social defeat versus belonging occur within social settings too
(Canter-Graae & Selton 2005; Myers & Ziv 2016). In the context of recovery from
schizophrenia in US peer-led recovery centres, Myers (2015; 2016) suggested how the work
of recovery from psychotic illness is dependent on ‘moral agency,’ consisting of participation
and recognition in wider social worlds beyond those tied to psychiatric patient-hood. Moreover,
experiences of social cohesion and emotional stability from primary caregivers can
significantly improve outcomes (Allardyce & Boydell 2006; Jenkins 2015). For clozapine
clients participating in my research, clinical caregivers often become the main source of
caregiving, and I observed this caregiving to be unemotional.
As Jenkins (2015) asserts, interpersonal experiences of emotion may be central to the lacunae
of comprehending differences in courses and outcomes of schizophrenia between and within
cultural settings. The clinically recognized factor of Expressed Emotion (EE), particularly
criticism, from primary caregivers is a predictor of relapse for psychotic illness such that those
with lived experience circumvent potential high EE interactions ‘both inside and outside the
family’ (2015:106). Jenkins, building on an early observation by Gregory Bateson and
colleagues (1956) that a difficultly in conforming to social rules may underpin schizophrenia,
posits that criticism can be understood ‘as a negative affective response to perceived cultural
rule violation’ (Jenkins 2015:114). Within American culture, relapse of psychosis amongst
Euro-Americans is not mitigated by expressions of emotional warmth from family members,
nor amount of time spent with family, compared to amongst Mexican Americans where greater
emotional warmth and more family time is protective (2015:133). Profoundly, in the clinics
where I was based psychotic relapse for clozapine clients who continued taking their
recommended dose of clozapine was unheard of and the majority (67 per cent) of my research
participants, primarily of European-descent (90 per cent), were mostly or completely estranged
from their families (see Appendix Table 1). Crucially, as I elaborate on this article, the
clozapine clinic constituted a place of both clear, albeit socially mundane, rules and low EE
interactions. It follows that the sociocultural reasons for the efficacy of clozapine treatment
deserve as much attention as psychopharmaceutical effects.
It may also be the case that psychosis treatment contexts where medical rituals do not centre
around psychosis management can better facilitate social integration and feelings of agency. In
regard to people diagnosed with chronic schizophrenia in Canada, Corin (1990; 2007)
suggested that frequent visits to a socially “blank space” where minimal interactions with
people were required, such as public places like restaurants, may provide people with a “social
skin.” Contrasting biomedical culture with Central African approaches to psychosis, Corin
(1990:184) noted:
[T]herapeutic possession rituals allow individuals to move between withdrawn and
integrated positions … Initiation into the ritual allows the patient to reintegrate the
cultural scene while remaining somewhat different. In our societies, differences remain
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
5
trapped at the periphery and that could qualify a withdrawal process with
irreversibility.
This paper considers how the clozapine clinic may provide similar opportunities for a “social
skin.” Further, as I have argued previously, clozapine clients can exhibit agency and creativity
that begins during blood work and extends to other ‘compartments’ of health (Brown & Dennis
2017). The ‘collaborative care’ between clients and clinicians in hospital psychiatric wards,
which ensures compliance to antipsychotic regimens after hospital discharge (D’Arcy
2019:92), may also be evident in outpatient healthcare if the clinical space allows for it. Taking
up Jenkins’ (2015:63) observation that the ‘interiorization of the clinic’ (a private clozapine
clinic in North America) was a ‘final relational quality of medication, and Mol’s (2008:92)
assertion that deciphering the active role of the client versus that of the clinical caregiver in
‘physical’ medical treatments is irreducible because the action moves around, I contend that
the clozapine clinic apparatus is productive - and beyond the goals and experiential sense of
‘order’ elicited by medication adherence (D’Arcy 2019).
I argue that routine clinical attachments in the clozapine clinic can serve a therapeutic role in
terms of providing opportunities for clients’ health agency, social competence and
accountability. I define health agency as the experience of having active control over one’s
well-being, where well-being is defined in one’s own terms but engages with one’s social or
healthcare context (Brown 2018a). The first part of my argument is that, despite blood work
being the most ‘objective’ aspect of clozapine treatment, clients expressed health agency by
helping to manage the monitoring processes they were subjected to. Just as blood symbolises
life whereby the ‘quality’ of it and the rhythm of it travelling through the body is construed to
be a key determinant of health or illness (Scheper-Hughes & Lock 1987:18), applicable to
anyone, blood is also a substance that can be enacted upon beyond clinical delineations of
blood work, speaking to Mol’s (2008) ‘logic of care.’ Mol (2008:26) reasoned how caregiving
is an open-ended process of negotiating ‘what to do and how to do it.’ I discuss how clear
expectations and consistent accountability upheld this process, including through my own
positionality and commitments as an ethnographer entering this space.
The second part of my argument is that a therapeutic quality was available because the clinical
emphasis and gaze did not directly concern social interactions. The existence of rules, as per
the clozapine clinic routine, and low EE from clinical caregivers explain this productivity.
Commenting on the notion of atypical antipsychotics as a ‘pharmacotherapy,’ Jenkins (2015:
64) observed that there is ‘not much’ that ‘happens as a matter of social engagement when you
have a “therapy” and there’s no one to interact with. Compared to the inclusion of group
therapy in the treatment circuit available in the clozapine clinic included in Jenkins’ study
(2015:32), the clozapine clinics I observed offered only biologically-focused treatment
registers. Nonetheless, this represented a social cage offering luxuries for Dan, eliciting
critical interactions with others. Throughout this paper, I suggest how “routine connection” is
less taken for granted in the UK clinic compared to the Australian clinic, in turn enabling more
reliable relationships that Australian clients like Dan would have benefited from. I also apply
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
6
Corin’s (2007) observations about social boundaries. In the final section, I reflect on how my
ethnographic findings concur with Myers’ (2019) recent applications of moral agency’ and
‘moral breakdown’ (Zigon 2007), including Bromley’s (2019) questions about ethnographic
partialities and roles in such contexts.
Clinic circuitries
Clozapine clinics encompass a mixed treatment register of heavily regimented physiological
monitoring of the vital signs in the body, alongside Mental State Examinations. Phlebotomists,
pharmacy technicians, pharmacists, nurses, psychiatrists and haematologists are foremost in
the orchestra of clozapine health professionals, while General Practitioners (GPs),
cardiologists, dieticians and support workers are often called upon too. One phlebotomist asked
me after I interviewed them what schizophrenia was; such knowledge was not relevant to the
blood taking role. These ‘physical’ treatment aspects differentiate what it means to be a
clozapine client rather than a client primarily defined by a psychotic disorder.
5
This clinical
focus can, at the outset, put both clinical caregivers and clients at ease.
First, the monthly blood tests and clozapine clinic checks provide exclusive safety assurances.
Australian clozapine coordinator Kerry pointed out that: “all the other antipsychotics can have
the same group of side effects as the clozapine the major ones being the blood disorders and
cardiac problems but the clozapine people are very lucky that the monitoring that goes with
it watches all those sort of things, so that, you know, it’s the safest drug for them to be on.”
Australian client Charlie said taking clozapine means: “you’re secure, and they [clinical
caregivers] feel confident in you.”
Because of the blood monitoring, the regimen could only operate on a provisional basis and
the power was not so much with the prescription pad. Blood work constitutes a more nuanced
and short-term ‘treatment plan’ than what Brodwin (2011) observed in a community
psychiatric setting in North America. Brodwin (2011:202;205) described how clinical
caregivers and clients can get ‘stuck’ in what might otherwise be a dearth of ‘objective
possibilities for action’ in the ‘therapeutic time.’ I did not observe ‘medical futility’ (Brodwin
2011) when observing the treatment plans in clozapine clinics. Prescribing clozapine could
only be done after blood counts were certified, and there was always a course of team action
to be taken around blood results.
Clozapine blood results are coded like traffic light colours: ‘green’ to signify safe to continue;
‘amber’ to signify the need to investigate (and re-test) before continuing cautiously; ‘red’ to
indicate immediate cessation of clozapine until white blood cell counts raise to produce ‘green’
readings. Red results move beyond the standard clinic circuity and require oversight from an
external authority.
6
Red results are uncommon,
7
but when they occur a haematologist employed
by the national clozapine registry is called upon. Following a red result of a UK client, the lead
nurse Clive consulted the Denzapine [clozapine] Monitoring Service (DMS) Haematologist
and then emailed the rest of the team, instructing the phlebotomists to repeat the Full Blood
Count daily because “if W[hite] B[lood] C[ell] counts and neutrophils recover to ‘green’ result
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
7
quickly, he [DMS Haematologist] will support rechallenge to get [client] back on clozapine
quickly. Clive instructed that folate, B12 and blood film needed to be checked, to rule out
alcohol as a primary cause, and for the Consultant Psychiatrist to refer the client to the local
haematologist, for a more general blood review. Clive concluded, In the meantime, [client]
remains ‘red’ i.e. no clozapine. Responsibilities for blood recovery thus moved between the
DMS Haematologist, Clive, the psychiatrist, a local haematologist, and to the nurses and
support workers (to remove any remaining tablets) until further assessment and actions could
be agreed upon collectively. Although implications for the client’s agency were temporarily
sidelined when resolving a ‘red’ result, clinical records did not capture the ‘interpretative
circle’ (Barrett 1988:285) between clients and clinical caregivers during blood work activity.
In the UK clinic, all blood work happened onsite, and this made for a tighter circuit of
communication and opportunities for expressing concerns. Clinical caregivers involved in this
aspect of monitoring could connect concerns to the broader implications and experiences of
clozapine, blood and the clozapine clinic. UK phlebotomist Sam remarked that, “a lot of it has
to do with anxiety training.” Linda, a long-serving pharmacy technician at the UK clozapine
clinic, described:
You can tell when people come into the clinic for the first few weeks, you know, they
don’t speak, and they’re very quiet, and they’re very… withdrawn. And as their dose
goes up and they start to feel better, and more sort of at home with coming to the clinic
then they’ll start talking to you, you know, they’ll initiate the conversation … it can
be really tiny things, really tiny things. (original emphasis)
The idea that a patient, like a patients’ blood, in a different sense, is simply “withdrawn until
the patient becomes at home (including clozapine dose adjustment), highlights the
importance of two-way transactions that are simultaneously regimented and personalised. The
eventual initiations of conversation from clients also highlights the subtle ways health agency
can build in the clinic.
Clients were given opportunities to report personal concerns that helped to facilitate the
connections between other nodes in the clinical circuitry, without direct clinical pressure to do
so. UK pharmacist Ros said, “sometimes people might say they’re feeling a little bit dizzy when
they stand up, or something like that, and then I’d say we [the nurse in the next room] need to
check your blood pressure because that sounds like it’s dropping when you stand up,” but such
connections are made more in the context of if they raised something.” Some clozapine clients
became conscientious of what they needed to report to clinical caregivers, especially if the
clinical team were less responsive.
In the Australian clinic, where the clinical network was more dilated, clients often had to work
harder to connect the clinical circuitry. For instance, Australian client Marie had been on
clozapine for 5 months.
8
Marie told me that she was concerned about her “blood” (phrased as
a general entity) being repetitively described as “low” by the nurse. This was a blood pressure
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
8
issue, not blood count, so Marie wondered if she should contact her GP because the nurse had
been dismissive: “He’d [the nurse] say you better ring - he would have, wouldn’t he? But he
didn’t, I’ll have to do it myself, better ring. Marie was also worried about her “low
lymphocytes,” and that she was “supposed to have my blood test 12 noon or after [be]cause
every time I have it in the morning I had to repeat the blood tests same week [be]cause the
lymphocytes are low… I think it effect[s] my health, and the low blood pressure now.” Marie
was engaging in suitable courses of action to take as she became acquainted with the
implications of clozapine blood work.
Newer clients like Marie drew quite specifically on blood imagery, and the ‘pharmaceutical
imaginary’ (Jenkins 2010) thus sometimes centred on blood. When I asked Marie what
clozapine felt like, she said, “I feel real sedated, in my head, like real sedated, might be because
blood pressure’s low, low lymphocytes, not very healthy; I don’t feel very well.” Indeed,
Jenkins (2015:46) noted that the efficacy of clozapine could be derived from ‘sensations of
tingling and numbing both in the brain and elsewhere in one’s body such as the legs or
bloodstream.’ Once familiarity had been built, clients not only drew on blood imagery to
manage clozapine consumption for example, UK client Nathanial strategically smoked
cigarettes “to lower that stuff [clozapine] out of my blood stream” (Brown 2018b:162, original
emphasis) they were able to pursue a more creative agency throughout the actual blood
monitoring process.
Creative care
From blood work preparation through to the bleeding, clients and clinical caregivers took a
dynamic role of care toward yielding the desired result. Mol (2008:26;95) positioned diabetes
clients as ‘not a target group, but crucial members of the care team,’ who ‘need to actively take
their care into their own hands and yet to let go of whatever it is they cannot tame.’ Clozapine
clients make for no exception to such gaining of control and acceptance.
In the UK clinic, clients who had become familiar with the process exercised a degree of control
over the process. There was both explicit ‘provisional agency’ (Weiner 2011), such as
instructing a phlebotomist to use a butterfly clip or suggesting which vein to try or asking for
extra cotton wool for the bleeding spot, or more quiet forms of health agency. I observed
ongoing interest in ‘what to try next’ to yield the mutually desired outcome (Mol 2008) of a
‘green’ blood result, so much so that casual advice that is complementary to formal exchanges,
can instigate reliable regimens. As previously described in the case of UK client Joanne (see
Brown & Dennis 2017:374), who managed her blood readings through exercise, because
Linda, a trusted pharmacy technician, had mentioned to Joanne that another client’s recurring
‘amber’ blood result may have been due to a lack of exercise, reliable regimens can be
instigated by casual advice, complementing but not necessary to formal exchanges.
Personal preparations for blood work could also mean maximising one’s chances of an efficient
bleeding process. UK client Hannah felt that when it came to the actual process of blood
withdrawal, she “used to find sometimes it was difficult and I used to think, I have to
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
9
exercise the day before?” She said this with a quiet intonation, as though she was self-conscious
of what I might think of this logic. Like Joanne, Hannah sought to improve her chances of
unproblematic blood work by exercising beforehand. She then realised: “I was sort of
exercising regularly anyway,and, decided that keeping up a routine of weekly exercise had
more long-lasting impacts on her general circulation: “they thought it was like poor circulation,
they’d like stick the needle in a few times and try and get it [her vein] … but it’s fine now.
She attributed this outcome to her regular exercise regimen.
There was sometimes a shared experience of anxiety around blood work between
phlebotomists and clients. Phlebotomist Sam explained, “you’ve seen these people for a long
time, so you know where the vein is and sometimes it doesn’t work, sometimes the vein… just
doesn’t respond [which] makes you feel deflated.” Sam made an active effort to chat with
clients in the waiting room, “whenever there’s a few spare minutes” so that “they’re not just
sat [sic] there, in isolation, waiting.” I observed Sam chatting to and smoking with clients
outside the clinic’s entrance, too. When it came to his role in bleeding clients who disliked the
process, he would
try and tell people that the best you can do is to sit in the chair, after you’ve had the
procedure, until your anxiety comes down … try and let the body adapt to that
environment first … if people are constantly having an amber result, then all we can
do is try and tell them to, um, drink water again… I mean we don’t really know what
effects the neutrophils and things like that, whether it’s something that they do.
(original emphasis)
Neutrophils are a type of White Blood Cell critical to fighting infection, and there was an
uncertainty about the agency of these cells and the agency of the person to manage them. This
uncertainty formed a further part of the pharmaceutical imaginary (Jenkins 2010) around
clozapine and could be creatively utilised by both phlebotomists and clients. I found that clients
tuned into information about blood counts that was the most personally meaningful and drew
on this information to strategise with. Rather than following instructions around fluid intake,
as Sam and Ros may have suggested, Joanne followed Linda’s informal advice and Hannah
took a more general approach to facilitating her blood circulation. Both women attended to
what might work and stuck with strategies that have worked. The advice they engaged with
also came with less pressure to act. Moreover, the receptivity of informal clozapine blood work
advice suggested a willingness on the part of clients to socially engage with caregivers in
everyday ways.
“The brain can’t live alone”
The focus on blood work allowed clients to situate themselves within more ordinary parameters
of fear and anxiety, to build a sense of relatedness to others. Australian client Marie disliked
blood tests but saw herself as one of many: “some people don’t like blood tests.” When I
confided that I did not like them either, she shrugged, “it’s just the sorta’ person we are.” In
terms of what made her uncomfortable, though, Marie was confronting shameful symbolic
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
10
associations she had made with needles. “This blood business”, she said, “it’s making me feel
like I’m like a drug addict”. She started to reassure herself again: “I’m scared [of] germs and
unclean, but they clean it and… I don’t-, [be]cause I’m not a drug addict.” She could not
entirely dismiss the associations with drug addiction, however, because her blood work
experiences could not be neatly discerned from her life experiences. Marie described to me the
“shame” she felt about her bisexuality and unresolved tensions with her deceased mother whom
she felt “never related” to her and who used to warn Marie that she would “get AIDS” from
being “promiscuous”. While Marie still avoided socialising outside the clinic, she felt that
coming to the clozapine clinic was about “being social” because: “there’s a lady there, she likes
me … maybe she feels she can help me?” She continued, “the care at the clozapine clinic
metabolic screening… when I’m having bloods, the nurse’s nice … my mind has to be around
people … the brain can’t live alone”.
The remarkable pharmaceutical imaginary (Jenkins 2010) Marie evokes in her statement that
“the brain can’t live alone” is focused on sociality and reconnecting her mind and brain to other
people she could trust. Marie has reconciled the emblematic ‘compartments’ of her health as
attended to during clozapine treatment (Brown & Dennis 2017) to assert her holistic
understanding that the ‘mental,’ ‘physical’ and ‘social’ aspects are interrelated. Similar to the
clinical concessions around how blood counts may be influenced by clients’ contributions to
the monitoring regimen, the imaginary of the clozapine clinic includes a remedial sociality.
Clinical caregivers who had experience with their own need for health-related injections could
also use this as means of normalisation and social connection. Australian Clozapine-
Coordinator Kerry had a number of chronic health conditions of her own that required ongoing
management. She said to me, “I can relate to my guys and the side-effects and stuff, you know,
if they talk to me about it, I’m really sympathetic.” She advised clients who were not yet
comfortable with the clozapine regimen of her own chronic health management:
I will disclose that to them, and say, ‘well I inject myself every day,’ to come in
here for clinic, and, you know, have all these silly questions thrown at you, whereas,
you know, if you’re like me, you just want to wring people’s neck and go away!
[laughs]
As I suggested in the case of Dan, and on which I expand on in the final section of this paper,
it appeared that limiting sympathetic conversations to the regular clozapine treatment protocol
context was appreciated by clients. In this vein, clinical caregivers were typically sensitive to
the concerns and needs of clozapine clients, but would never disclose their personal ‘mental’
health concerns. Having been on sick leave for a few weeks, Kerry told me out of earshot of
anybody else that she had been feeling “psychotic” lately, due to a combination of a new
medication she was prescribed by her neurologist and a steroid cream from her GP that had
given her rashes, culminating in an inability to sleep. This suggested Kerry’s empathy for
‘mental’ health experiences faced by clients was, as well as an appreciation for the fusion of
‘mental’ and ‘physical’ health, although it would not have been productive for her to explicitly
disclose this personal affinity to clients.
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
11
Coagulation and flow
Participating in a regular clozapine clinic routine provided a basic tempo that clients did not
take for granted. As Corin (2007:282) suggested of the Canadian schizophrenia outpatients in
her ethnography, participating in some form of public life generates ‘[r]hythm and routine,’
which ‘can add structure to patients' spatial and temporal worlds.’ One of the most distinctive
differences between the UK and Australian clinics was that blood work was only performed
on site and ‘in time’ at the UK clinic, mirroring the synchronous nature of interpersonal and
clinical connections.
In the UK clinic, blood was drawn and analysed within approximately 15 minutes, with a
psychiatrist in the next room to sign off on the dispensary of clozapine tablets. In the Australian
clinic, this process usually took three to four days. Blood took three hours to process at
pathology centres, before the clozapine coordinator could proceed to make the CPMS entry,
then request the script from a psychiatrist (none of whom worked consistently at the clinic),
then fax the script to the pharmacy with a 24-hour turnaround time, pick up the clozapine from
the pharmacy, in time for the client’s attendance at the clinic. Typically, the blood tests were
taken at general pathology centres on a Monday or Tuesday and clients came in for their
appointments at the clozapine clinic on Thursday or Friday. This interval was usually greater
than the 48 hours recommended in the national guidelines and, as a precaution, Australian
clients had their body temperature checked for signs of infection as a next-best assurance of
white blood cell count.
9
The UK clinic was both more efficient and appeared to be more open to pursuing structural
improvements. UK psychiatrist George, who said the clinic team was “challenging ourselves
continually, in order to improve what we do,” was in the process of trying to extend the clinic
opening times to include a 5-7pm slot on a weeknight, “for people who are working help
them to engage better.” Flexible arrangements more attuned to the needs of clients was hard to
imagine in the Australian clinic. When I had interviewed Dan during my first round of
fieldwork the previous year, I had described how in the UK clinic they had set up an
appointment system. Dan said, “Wow! That sounds good, because, yeah, I have to go in on
Monday… If I start working again, sort of once a month, I’m gonna’ have to, you know, sort
of work that into my day.” Australian client Charlie also said of coming to the clinic, “it’s not
a big deal, I mean, it’s a mild inconvenience, but I’m not working, so(original emphasis).
As well as the blood work being less efficient, there were occasionally ‘clots’ in general
clozapine clinic activity flows in the Australian clinic. For instance, a few days before
Christmas (necessitating careful renegotiating of blood work, clozapine supplies and
appointment times for clients who were due to be seen during the week the clinic would be
closed), clients could not be seen as the blood results had not yet been entered into the database.
The assigned temporary clozapine nurse was not registered with the database, and so another
nurse had to step in at the last minute, delaying both the clozapine and non-clozapine clinic
casework. This contributed to the circumstances in which Dan had decided to withhold his
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
12
verbal communication with another temporary clozapine nurse.
All clozapine clients appreciated accountability. The UK clinic had recently started an
appointment system allocating 15-minute time slots in which patients could expect to have
their bloods done, and the clinic opening hours moved to earlier in the morning. This was
psychiatrists George’s idea to see if clozapine clients would sleep in less if they had somewhere
to be. Clients spoke to me about how much they appreciated the new appointment system.
10
UK client Trevor described how, “you know when you’ve got to arrive and, when you do
arrive, you don’t have to wait very long it’s a lot better.” When I mentioned the possibility
of earlier opening times to an Australian nurse participating in my study, they dismissed the
idea and could not believe that clients in the UK would really wake up so early. This suggests
that the UK clinic team had higher expectations for, and faith in, clients’ willingness to be
accountable. Akin to having a sense of accountability is a potential for, if not immediate
experience of, ‘moral agency’ (Myers 2015;2016). This was, however, contingent upon clear
expectations around social exchanges.
Consistency was important to keep the flow of clinical interactions operating smoothly. One
morning in the UK clinic when there was a queue of clients waiting by 9am, the phlebotomist
team decided to start taking bloods early to reciprocate this commitment to punctuality. But a
new phlebotomist joining the team had limited experience using thicker needles. With the first
client, no blood made it into the syringe, resulting in a messy blood spray. Clive, who was
attending to another client, was called to take over. He told me how confused he was about
why the team had started early. When UK client Ben arrived only a few minutes late to his
9.30am appointment that day, there were more people waiting than usual and so he quickly
sought reassurance that he was not late. Ben then agreed to do our previously scheduled
interview while he waited but seemed uncharacteristically anxious, asking me to check if he
was due for his general ‘physical health’ monitoring as well. When exchanging greetings with
a friend in the corridor, Ben did so more hesitantly than I had previously observed when the
routine was more predictable. The mix-up of his initial plans seemed to make him warier.
Moreover, as the clozapine clinic constituted a very specific kind of interaction, I had to be
careful not to disrupt it, either.
While I was able to fit into the clinic rhythm once familiar with it (assisting with clinical tasks
such as holding blood work materials, if not just sitting quietly in the background), my presence
and absence could cause disturbance. The main reasons people gave for choosing not to
participate in my research were that they did not wish to talk about their pasts, or that they were
concerned about saying the wrong thing - similar to Dan’s fears about “speaking right”.
When I returned to the UK for the second visit, a few clients solemnly remarked that I had not
returned as soon as I had said I would (I was two months late). I had let them down, and I had
to rebuild rapport in some instances before interviewing them again. UK client Geoff declined
to do a follow up interview with me altogether because, as he told Clive, “it was too traumatic”
last time. Reassuring me that I had not breached any ethical codes of conduct, Clive remarked,
of course it is [traumatic] even coming into the clinic can be traumatic for our guys” (original
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
13
emphasis). Geoff had told me that he saw his GP “every six weeks” for a “general chat” about
“whatever personal questions bother me at the time.” When I asked him who his main support
was, he mentioned a private psychiatrist, not affiliated with the clozapine clinic. Yet, Geoff
still opted to have his blood work done through the clozapine clinic system.
11
Some clients nominated to attend the clinics weekly just to collect their medication in between
their monthly bloods. Attendance gave them something to plan around, and even dress up for.
UK client Trevor collected his medication from the clinic every week, and he, like a number
of clients, often elected to come in and talk with me on days when he did not have clozapine
appointments. My last meeting with Dan occurred at a time that was least expected (or
planned), perhaps because the clozapine clinic rhythm had already broken. Before returning
to this point, the particular style of interpersonal interaction during regular clozapine clinic
activities gives cause for consideration.
Social contact at a negotiable distance
While the clozapine clinic constituted a private space in terms of conditions of entry, the space
itself was shared yet discrete enough for clients to feel a part of something while also steering
levels of intimacy. In exploring conditions where people with chronic schizophrenia are able
to move between social reintegration and withdrawal, Corin (2007:282) elaborated that a space
is beneficial when it
[O]ffers a way for them to relate to others without having to commit themselves in
personal interactions. One might say that this behavior provides patients with a kind
of "social skin" that both contains and protects an inner space and mediates their
relationships with the outside world Connecting with the world paradoxically
appears to be secondary to the ability to remain separated from it to stay at a distance
and introduce a kind of "blank space" into the social fabric.
Clozapine blood work keeps clients and staff at a safe ‘distance’ from one another. The
clozapine clinic as a socially “blank space” could provide a platform for clients who found it
difficult to trust others. The majority of clients I spent time with had experienced intense, and
often traumatic, interpersonal past relationships.
A social world that was a little simpler and less emotionally demanding was thus preferable
so long as routines were predictable. This may partly explain why 67 per cent of clozapine
clients in my study were mostly or completely estranged from their families (Appendix Table
1). After many years of intermittent phone contact, UK client Felix told me he that had ceased
contact with his family altogether several years ago having found it very difficult to talk to
them,” especially when they would tell him to “contact support services or pull yourself
together.” The few clients who did see their family seemed to manage better when the
expectations were clear. UK client Ben only saw his family for a particular length of time each
weekend and they would even cook him his favourite meals at particular times in the day, a
show of simple and predictable kindness that he looked forward to each week. As UK client
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
14
Luke explained to me, his general well-being was helped when he was able to “stick to a
routine.” Everyday tasks like grocery shopping quickly left him “overwhelmed” unless the task
seemed “surmountable” (such as knowing which bank card to use or which queue to join) and
whether the people he interacted with seemed relaxed (“older bus drivers are less fussy”).
Further, UK client Joanne described how interpersonal situations with no “power dynamic”
were more manageable. UK client Alice, who had first declined clozapine due to the mandatory
blood tests, had recently changed her mind but wanted “to be very private.” Alice found it
“quite hard to be with people”; to “trust” them. She had been sexually abused throughout her
childhood. She told me her psychosis had manifested as both a soothing “presence” of
“someone looking after me all the time, and what she had come to call “bad hallucinations”
invading her space, leading to panic attacks. Once on clozapine, Alice attended the clinic more
often than was asked of her.
12
The clinical contact seemed to be supplementing the company
of Alice’s guardian “presence” at home.
Despite many clients experiencing intermittent paranoia and/or the hallucinatory presence of
others, such experiences were never invasive while in the clinical space itself and this may be
because people felt socially occupied. Australian client Trent told me how his simultaneously
kind and persecutory hallucinatory presence accompanied him to the clozapine clinic but kept
quiet and never interfered with his behaviour here, as she tended to otherwise do outside the
clinic. He explained, she seems to leave me alone really when I’m doing things, but um, when
I’m not doing things, when I’ve got time to chat, she comes and talks to me … She’s not around
when I’m with people. This suggests that Trent felt himself to be socially engaged while at
the clinic.
The activities and social opportunities available at the clozapine clinic are important to think
about in light of some unforeseen impacts of deinstitutionalisation. Clive, the UK lead
clozapine nurse, reflected to me one day:
Back when there were institutions, patients would have to get up every morning,
shower, have their medication and breakfast, a bus would come and pick them up to
take them to work - a factory job that suited their interests as much as possible, spend
their money on socialising opportunities like lunch with other patients, a bus would
bring them back and everyone would have dinner, be brought their meds… the voices
didn’t bother people as much; people were occupied. The patients you see today
complain of voices bothering them when they’re alone, not when they’re out doing
things.
My ethnographic data suggests that clozapine clinic treatment may be offering an effective
middle ground, insofar as allowing independence, accountability and non-intrusive forms of
sociality for clients to work with. UK client Luke, new to clozapine, told me that he appreciated
the “human contact” provided by the clinic, which became more reliable over time.
Longstanding UK client Peter, said of getting his bloods done, people are concerned about
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
15
me, so it makes me feel better straight away.” Both Luke and Peter were mostly estranged from
the families and did not have much social support otherwise.
The potential for care and quiet sociality in the clinical space was not unnoticed by clinical
caregivers, either. Phlebotomist Tina, who had initially worked as a receptionist for the clinic,
told me how she had gotten to know clients significantly more since withdrawing their blood.
She noted the benefits of “just having a general conversation, asking ‘how’s your day been?’
She remarked that if you don’t ask, they don’t tell you.When I asked Tina if she thought
they liked being asked, she replied, “yeah, I think that they do because they feel that someone
cares.” That morning she had talked to a client about a number of “other problems” aside from
clozapine and the client said to her afterward, “I know you’re busy but thank you for listening.”
When Tina said to let her know if there’s anyone she can refer her to for more help, “she said
‘no, no, I’ve got it all under control,’ and she seemed to be fine.” When I asked UK pharmacist
Ros about the importance of “therapeutic contact” during the blood taking process, she said
“absolutely, and for somebody like Linda [pharmacy technician], who has been with this
service so many years yeah, I think that is, hugely important.” When Linda is away, Ros
commented, “people come in and notice, ‘Oh, no Linda today.’” Ros furthered, “I think for a
number of patients who’ve been coming here for years, there is a social element to it - not
because of cloz [sic]- but just because they know each other.”
As Dan suggested, clients could negotiate the degree of interactions with others as part of
asserting how much time they could comfortably spend with others. UK client Trevor said to
me, “I do meet up with friends from the past every so often at the clozapine clinic.” Yet, like
most clients, he qualified that:
I like my own space, but also like company as well from time to time. You know, a
combination. I don’t like other people impinging on my life, you know. If you’re in a
care home living with a group of people it’s very, very hard because you clash and fear
[sic] with each other, you know?
The clozapine clinic stood apart and distinct from places that “impinged” too much on clients
lives. When I had commented to Dan during an early interview that sometimes clients in the
UK clinic chatted in the waiting room, Dan responded, Yeah, I don’t mind, you know, seeing
the same person every month and, you know, talking with them when we’re in the waiting
room together or whatever. But I don’t socialise with them outside.” The sociality was only
wanted inside the clinic.
Moral affordances
The above ethnographic data suggests that the clozapine clinic environment can help clients to
redefine their identity beyond psychosis, to be respected by and held accountable to clinical
caregivers, and to develop everyday relationships that may not be available otherwise. Moral
agency in the context of recovery from psychotic illness is contingent upon having command
over one’s narrative; being socially valued as a ‘good’ person; and having the opportunity to
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
16
engage in meaningful relationships with others (Myers 2019:14). As Myers (2016:435)
asserted, being able ‘to be held accountable makes for possible stronger connections to
others. I observed clozapine clients to exercise such competency in the clozapine clinic. But
moral agency in this context depended upon the stability of clozapine clinic exchanges.
Dan desired more fluency in his inter-personal interactions within his perceived social cage,
but he was more comfortable working in what did feel like his own space and clozapine clinic
space that was familiar to him. He was looking for ways to most productively be in, and connect
with, others. In his dealing with the instability of the clinical personnel and operations, we can
also apply the framework of a ‘moral breakdown’ (Zigon 2007), as Myers (2019) has recently
done. Drawing on Heidegger’s notion of being-in-the-world,
13
Zigon (2007) pointed to the
‘breakdown’ that occurs when unreflective being-in-the-world is disrupted. Zigon (2007:148)
suggested that, ‘a distinction must be made between the unreflective dispositions of everyday
life and the conscious ethical tactics performed in the ethical moment [the moral breakdown].’
Perhaps Dan was working through a moral breakdown, insofar as the familiarity of his
clozapine treatment routine had been disrupted by both the nurses who he had come to know,
however dispassionately, having left, only to again be temporarily replaced by someone who
did not want to be there. When trust is broken down, this paves the way for future doubts and
a sense of unpredictability when it comes to interactions with others.
The everyday morality otherwise taken for granted rose to the surface, prompting Dans more
explicit experimentations and my ethnographic accommodations. While still communicating
the information that the covering nurse needed, he was not yet ready to take full part again in
the regimen, towards the ‘unreflective comfort of the familiar (Zigon 2007:138), because the
routine simply could not be relied upon until a replacement nurse a new unemotional familiar
became available. Moreover, it was at this point that my position as an ethnographer may
well have constituted ‘a vector for therapeusis and moral development’ (Bromley 2019:110).
This was not necessarily, though, about creating ‘an intersubjective space that was not
mediated by a biomedical paradigm’ as Myers’ (2019) ethnographic team appeared to have
done (in Bromley 2019:110). In order for Dan to feel secure, I both replicated the slightly
detached but familiar biomedical gaze and provided a stopgap for the clinic regimen disruption.
I attempted to uphold the tone of compassion usually available in the clinic as much as offer
an alternative, ethnographic type of moral support.
Conclusion
This paper has made the case for clozapine clinic monitoring as an integral part of both clients’
health agency and a relational aspect of clozapine treatment. I have argued that, in shifting
focus away from psychotic illness and instead centring clinical attention around physiological
monitoring and particularly blood work, the clozapine clinic became a generative space for
clients to explore their agency and sociality on more neutral ground. Opportunities for social
participations during the clozapine regimen were acknowledged, upon reflection, by both
clients and clinicians participating in my study. In Australian client Dan’s words, his “only
routine connection to the outside world” may have constituted “a cage,” yet here Dan felt
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
17
himself to be “treated really well” and was compelled towards “perform[ing] socially.” In
challenging narratives of ‘social defeat’ in the context of psychosis (Luhrmann 2007; Hopper
2008), the clozapine clinic spaces I observed were more likely to subtly facilitate feelings of
social purpose beginning at the level of blood work.
Blood work was not just about routine compliance, visibility, and results outside of anybody’s
control. Blood became a part of the pharmaceutical imaginary (Jenkins 2010), while the
clozapine clinic space entered both clients and clinical caregivers into a fluid contract of
accountability and creativity. Assertions of health agency and simple social exchanges were
evident through the blood taking rituals and clinical check-ups. Clients can be described as
having a ‘social skin’ (Corin 2007) while inside the clinic, which even protected against
intrusive hallucinatory presences. Moreover, the reliable and less emotional disposition of
clinical caregivers involved in clozapine treatment, wherein concern for psychiatric diagnosis
moves in the background, parallels with cross-cultural findings about people diagnosed with
schizophrenia responding more favourably when they are not fussed over or treated as
incompetent (Luhrmann & Marrow 2016). The low levels of Expressed Emotion in regard to
lack of emotional ‘warmth’, which Jenkins (2015:133) notes as less consequential to clients in
a Euro-American context, also parallels with findings inside the Australian and UK clozapine
clinics in this study. As I illustrated with my time spent with Dan, my transactional approach,
which was sympathetic but not emotional, helped him to feel safe.
There were, however, circuitry blockages to navigate between clinical checkpoints and the
clinical personnel, which highlight differences between the UK clinic and the Australian clinic.
When clinical activities and caregivers operated consistently, clozapine clients expressed their
‘moral agency’ (Myers 2015;2016) as part of their health agency and capacity to engage in ‘the
logic of care, otherwise ascribed to non-psychiatric healthcare clients (Mol 2008). When the
UK clozapine clinic held clients more accountable, such as to the earlier and more efficient
clinic appointment system, clients responded. When clinical circuitries and personnel became
less predictable, clients were sensitive to this. Yet, even when the clinical routine was
destabilised for longer periods of time, as seen in the Australian clozapine clinic and Dan’s
response, the interactions experienced in the course of clozapine clinic attendance were not a
source of social deprivation. Dan experimented with his interactions in the clozapine clinic, as
it was the only space available for him to do so.
I have emphasised in this paper the importance of predictable interactions and care for people
diagnose with schizophrenia, and the potential of a clinical routine that deemphasises psychotic
illness and allows for more ordinary social exchanges. As clozapine clinic monitoring focuses
primarily on ‘physical’ health matters of, which caregivers can relate more comfortably at
least to some degree this allows for much easier social connection. Although the long-term
use of antipsychotic drugs remains questionable at the same time as the remarkable
pharmacological effects of clozapine at even sub-therapeutic doses maintaining its clinical
legitimacy as a miracle drug (Murray et al. 2016; Savulich et al. 2018), biochemical
explanations should not be the only factor in explicating the efficacy of clozapine. It is the
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
18
whole operation of biochemical and gentle social chemistry that explains how psychosis can
be temporally relegated through clozapine treatment.
Acknowledgements
I would like to sincerely thank my research participants for allowing me to participate in the
part of their lives that took place at the clozapine clinic, and for taking the extra time to
reflect on their experiences through interviews with me. Thanks to Professor Simone Dennis
(Australian National University) and Dr. Emilio Fernandez-Egea (University of Cambridge)
for their integral supervisory support during my fieldwork. This research was supported by an
Australian Government Research Training Program (RTP) Scholarship. Much gratitude goes
to the two anonymous reviewers of this article for their encouraging and thoughtful feedback
that helped me to refine the arguments put forward.
Notes
1
In Australia and the United Kingdom, clozapine (also known by the brand names Clozaril and Denzapine) is the
‘gold standard’ but last resort anti-psychotic treatment for chronic schizophrenia (Dold & Leucht 2014). Imminent
physiological risks include agranulocytosis (disruptions to the bone marrow production of white blood cells),
myocarditis (inflammation of the heart muscle), pulmonary embolism (a blood clot moving to the lung), metabolic
syndromes (often culminating in obesity), insulin resistance, seizures, excessive salivation, chronic sedation and
constipation (Fitzsimons et al. 2005; Salzberg & Castle 2010).
2
The UK database is the Denzapine [brand name for clozapine] Monitoring Service (DMS), while the Australian
database is the Clozapine Patient Monitoring Service (CPMS).
3
People meet the criteria for ‘treatment-resistant schizophrenia’ when they have not responded to at least two
alternative antipsychotics (including at least one first generation and one second-generation drug) (Lambert 2010).
All diagnoses for participation in my study met the F20 criteria for schizophrenia in the ICD-10 classification
manual (WHO 1993). An additional seven participants I had interviewed had to be excluded because they were
either diagnosed with schizoaffective disorder (F21) or over the age of 55, which my Human Research Ethics
Committee protocol had not allowed for. 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).
4
I acknowledge that ‘recovery’ is a subjective and varying term, and one that makes cross-cultural measurement
problematic. I adopt Myers (2019: Note 1, p.31-32) definition: ‘a key way to describe a return to a meaningful
life often even a better life after the experience of extreme states and the often negative experiences of
diagnosis and treatment,’ largely through social reintegration.
5
The corporeal focus of clozapine treatment can be looped back to the time when ‘mental’ illnesses were first
pathologised under Hippocratic medicine’s attention to bodily networks of blood and nerves (Porter 2002). If
schizophrenia could be pathologically located today, it would be via brain scans illuminated by cerebral blood
flow and cerebrospinal fluid or via biomarkers within blood (Rose & Abi-Rached 2013). In lieu of biomarkers,
the mandatory blood work and governance attached to clozapine makes it as unique as its apparent efficacy in
alleviating psychiatric symptoms (Meltzer 2010).
6
The clinic therefore also serves as a site for a biometric data collection, who hold responsibility if ‘red’ results
are not redressed.
7
Pharmacist Ros recalled, “I can think of one person who was a genuine clozapine red, who’s white count dropped
virtually to 0 ... He was at the monthly blood test stage, and we wanted to admit him to hospital for his physical
health, [be]cause he had virtually no immunity… we had great difficulty persuading him to come in. So, he’s a
case when clozapine was immediately stopped, and we ended up having to give him Filgrastim to stimulate his
bone marrow, to bring the white count back. And he’s somebody who’d be a risk to rechallenge on clozapine.
Again, he’s the only one I can think of who’s been an absolute, genuine, clozapine red.” (original emphasis)
8
This meant that Marie was having fortnightly blood tests, soon to be spaced out to what would become the
regular monthly routine (after 6 months).
9
The Australian clinic was also more concerned by people exhibiting symptoms of a cold in case this would take
their WBC into the risky range. Clozapine coordinator Kerry, elaborated, “say they get a full on cold, or a chest
Brown, JEH. 2019. ‘Relegating Psychosis: Blood work and “routine connection” in the clozapine clinic.
Culture, Medicine, and Psychiatry. DOI: https://doi.org/10.1007/s11013-019-09653-6
19
infection, their white cells go sky high because they’re fighting the infection, so, during the period when the white
cells and the neutrophils are really high, we increase the monitoring, just like we do when they go ‘amber,’ we
increase the monitoring so it’s twice weekly bloods until the white cells come down into the green range, but then
you’d be mindful that they’ve had this infection and that they don’t slip right down into the ‘red’ range.”
10
I note that the new appointment system was often the first topic that UK clients mentioned during interviews
when asked about the clozapine clinic. While at the time I thought this topic focus might lend to too much of a
‘health service survey’ impression on my part, I recognise now the significance of being able to talk about
something so simple and easy. The appointment system may have given UK clients a larger canvass for discussing
non-psychiatric matters.
11
Monitoring and collecting clozapine through a GP, a psychiatrist and hospital pharmacist was an option for
clients who could afford it, but I did not have access to knowledge about these clients. I am unclear as to whether
or not this would have been financially feasible for Geoff.
12
Alice accompanied a fellow client for their appointments, even if it meant returning an hour later to have an
ECG, an interview with me, or to drop by with biscuits to thank the clinic team.
13
Where being-in-the-world is inherently social albeit experienced personally; where moral actions are taken for
granted due to familiarity in interactions (Zigon 2007:135).
Conflict of Interest
There is no conflict of interest
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Appendix
Table 1. Demographics of all 43 recruited clozapine client participants
United
Kingdom
Australia
Total N
Total %
N
N
42.14
9.49
39.14
9.70
41.16
9.55
Male
Female
24
5
11
3
35
8
81.40
18.60
European-descent
Non European-
descent
26
3
13
2
39
4
90.70
9.30
Employed b
Paid
Voluntary
and/or Study
Unemployed
9
13
11
3
2
9
12
15
20
53.48
46.52
Alone
With spouse
Supported housing
Family:
With parents
With sibling
20
2
6
0
1
9
0
3
2
0
29
2
9
2
1
67.44
4.65
20.93
6.98
Estranged
Completely
Mostly c
Not estranged d
3
15
11
2
9
3
29
14
67.44
32.56
a Age is presented as a mean plus and minus the standard deviation
b Some clients did both paid and voluntary work
c Contact with family is irregular (annually on average) and/or completely estranged from most
immediate family members
d Contact with family is regular
... The scenario is further constrained by obstacles in the social and psychosocial sphere that have been identified in the anthropological literature, both in earlier work dealing with first-generation antipsychotics (Estroff, 1985;Rhodes, 1984) and in later studies about recovery and second-generation antipsychotics (Brown, 2019;Jenkins, 2015;Choudhury et al., 2015). Jenkins (2015:65) and Jenkins and Carpenter-Song (2008:381) identify the two "paradoxes of lived experience" labelled "recovery without cure" and "stigma despite recovery." ...
Technical Report
Video resulting from the Collaborative Management of Medication in Mental Health project. Link: https://www.youtube.com/watch?v=RNHe2LFdvNg&feature=emb_logo
... The scenario is further constrained by obstacles in the social and psychosocial sphere that have been identified in the anthropological literature, both in earlier work dealing with first-generation antipsychotics (Estroff, 1985;Rhodes, 1984) and in later studies about recovery and second-generation antipsychotics (Brown, 2019;Jenkins, 2015;Choudhury et al., 2015). Jenkins (2015:65) and Jenkins and Carpenter-Song (2008:381) identify the two "paradoxes of lived experience" labelled "recovery without cure" and "stigma despite recovery." ...
Technical Report
Video resulting from the Collaborative Management of Medication in Mental Health project. Link: https://www.youtube.com/watch?time_continue=14&v=4luEoiI37f8&feature=emb_logo
... The scenario is further constrained by obstacles in the social and psychosocial sphere that have been identified in the anthropological literature, both in earlier work dealing with first-generation antipsychotics (Estroff, 1985;Rhodes, 1984) and in later studies about recovery and second-generation antipsychotics (Brown, 2019;Jenkins, 2015;Choudhury et al., 2015). Jenkins (2015:65) and Jenkins and Carpenter-Song (2008:381) identify the two "paradoxes of lived experience" labelled "recovery without cure" and "stigma despite recovery." ...
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