NOT WAVING, DROWNING

Correspondence

Russell Marks

Sarah Krasnostein’s essay makes many important observations about Australia’s mental health system and the people caught up within it. Stigma endures despite decades of awareness campaigns, partly because of the competing need – often expressed through News Corp’s papers and commercial TV current affairs – to moralise, to punish and to stoke fear. Like every other funded service, mental health is subject to the dictates of administrative gatekeepers who are the foot soldiers of the neoliberal revolution. Often this produces contradictions. Governments point to the extra millions and billions they’re investing in mental health, but people trying to access those resources need to jump through ever more hoops. Neoliberal ideology doesn’t allow the provision of a universal public service for a universal public benefit, so people who have the least means to stay afloat end up drowning in tides of bureaucratic “criteria”: mental healthcare plans; Centrelink applications and assessments; bureaucratically imposed geographic boundaries; non-government organisations which will do this but not that; never-ending waiting lists. Stable housing is now fairly universally recognised as the main precursor to stable mental health. Fifty years into the neoliberal revolution, our system of housing, as Krasnostein repeatedly observes, is now entirely broken.

For all practical purposes, there are two mental health systems in Australia. There’s a system for people who can pay private psychiatrists and psychologists, and then there’s the public system. Many people who find themselves engaging – as patients or as their families or friends – with the public system in most parts of the country are bewildered at the lengths to which it goes to apparently keep people sick.

Throughout 2020 I worked for a publicly funded legal service in a capital city (not Melbourne), representing people with diagnosed mental illnesses and intellectual disabilities. Among the extraordinary powers doctors have under state and territory legislation is the ability to “section” patients: to subject them to involuntary psychiatric treatment and to detain them in a hospital in order to effect it. (The colloquial term “section” is shorthand for the particular legislative clauses – they’re different in each state’s Mental Health Act – which authorise these actions.) To ensure doctors aren’t using those powers unnecessarily, all involuntary treatment orders are automatically subject to periodic review by mental health tribunals. What I learnt in my year in those tribunals was that any transparency and accountability they appeared to provide was mostly a façade. In practice, nobody wanted to second-guess the original doctor’s decision to make the order. Patients had a right to a second medical opinion, but invariably that opinion would be provided by the first doctor’s colleague, in the same hospital.

Patients under involuntary treatment orders are chronically gaslit. I saw patients who were routinely punished for merely asking questions of their psychiatrists, whose progress reports to tribunals would claim that patients “did not accept” their diagnoses and therefore “lacked insight” into their conditions. “Insight,” it turns out, is fundamentally important in public psychiatry. As far as I could tell, a patient with “insight” is one who dutifully and unquestioningly accepts their diagnosis (even if it’s a vague and imprecise one like “schizoaffective disorder”), their treatment (even if it’s a heavy dose of psychotropic medication which causes them to gain weight rapidly, lose the ability to orgasm and sleep all the time) and their environment (even if it’s a closed hospital ward). These dutiful patients were obviously easier to deal with, so they got an easier run: nice things would be written about them in progress reports, and tribunal members would smile and say encouraging things. Patients who asked questions, or who became frustrated, or who disputed their diagnosis would invariably be accused of “lacking insight,” which meant they couldn’t possibly be ready to progress to a less restrictive form of treatment.

Psychiatry is necessarily an inexact science. It’s common for psychiatrists to disagree about diagnoses and treatment, because the same symptoms are often consistent with a range of conditions. But consult two psychiatrists who are colleagues in the same public hospital system, and the second will invariably concur with the first.

Very occasionally I’d have a client who was able to secure – by paying for it – a second opinion from a private psychiatrist who was entirely independent of the public hospital treating team. This was rare: the professional world of psychiatry is a small one. But this was practically the only way of problematising the narratives created by the public hospital treating teams. If the private psychiatrist recommended less restrictive treatment, the tribunal was generally obliged to endorse it. So middle-class clients were sometimes able to find a crack in the walls erected by the public treating teams. But schizophrenia isn’t generally a middle-class disorder. Strongly correlated with severe childhood trauma, it most often afflicts people in poverty, or causes middle-class sufferers to sink into poverty. Most of my clients had no access to a private psychiatrist. They simply had to cope with the demands of their hospital treating teams.

The general rule – compliance good, questions bad – seemed to me to be entirely the wrong way round. Surely it’s outside the normal range of human experience to be confronted with a complete lack of freedom and respond with total submission? Yet over and over again, that’s what public psychiatrists and mental health tribunals appeared to demand. Over time, some of my clients learnt what was expected of them, and played along. When they spoke to me, they would express the kinds of doubt and rage I’d normally expect from anyone forced to take debilitating meds and prevented from going outside. To their doctors and nurses and social workers, they’d say “yes ma’am, no sir, three bags full.” Invariably, these patients would slowly progress to less restrictive treatment.

In her essay, Krasnostein points to a possible motive other than clinical need which might account for this common experience among public mental health patients: power and control. My socio-economic status is such that I occasionally mix socially with doctors. In my experience, doctors are rarely democratically inclined. I’ve often wondered whether this is a necessary corollary of being required to make very quick life-and-death decisions, for which self-doubt must be entirely unhelpful. When they debrief after shifts, it’s often to express a kind of outrage that a mere patient or their family dared question their expert assessment. One doctor told me once of his discomfort when he discovered that a more senior colleague had made a potentially life-threatening error. During the exchange which ensued, the doctor told me he’d “never” report a colleague, and would “always” endorse that colleague’s medical opinion to the patient, even if he suspected or knew it was wrong. Medical culture, I suspect, has a lot to answer for.

Occasionally I have met doctors who seem genuinely committed to involving their patients – and their very human fears, uncertainties, doubts, questions and, yes, even rages – in decisions which will affect them. Often in public psychiatry this simply isn’t possible, because many patients are very unwell. But even when confronted with a schizophrenic patient in the florid throes of a psychotic episode, surely the public mental health system has more to offer than bed restraints and forced injections in an austere ward?

One of my clients, who had migrated from Tanzania, was on very high doses of antipsychotic medication to treat her “treatment-resistant” schizophrenia. (I was never able to resolve this contradiction: why continue to inject medication with strong side effects into patients whose conditions aren’t responding to it?) She constantly reported feeling lonely, depressed and hopeless, which she said was due to the fact that she couldn’t see a way out of her very restrictive existence. She wanted to return to Tanzania, but that option was never seriously considered by her treating team. (In his remarkable book Crazy Like Us: The Globalization of the American Psyche, Ethan Watters observes that non-Western cultures often respond rather less restrictively to what the DSM describes as “schizophrenia.”) She died suddenly while waiting for her umpteenth six-monthly tribunal review. I strongly suspected suicide, but I wasn’t allowed to know her cause of death.

Another client, also diagnosed with treatment-resistant schizophrenia, often told me of feeling hopeless and lonely, and said that he was consumed by memories of the horrific abuse he endured as a child. I obviously couldn’t know whether those memories were true or symptomatic of his schizophrenia, but I was struck by his treating team’s unwillingness even to attempt to obtain any collateral information. While he broadly understood the need for his anti-psychotic medication, he also consistently requested grief and trauma counselling, or at least “someone to talk to.” His doctor told me that there’s no evidence that talking therapy has any clinical benefit for schizophrenia. Indeed, none of my clients in the public mental health system were ever able to access regular counselling or psychological therapy: it’s been well documented that public health psychiatry has moved a long way from its psychoanalytic origins, and now seems to consist of a trial-and-error approach to the various pharmacological alternatives currently available. My client’s entire experience of the public mental health system was as an involuntary patient who was punished with hospital admissions whenever he didn’t show up to his fortnightly depo injection, which (for him) never did much other than make him sleep all day and night. His was an almost unimaginably bleak existence.

Another client, also diagnosed with schizophrenia, had been considered “treatment-resistant” until the advent of the NDIS, when he began to gradually take control of his therapy and his life with the help of a trusted support coordinator. He’d occasionally say strange things, but the proof was in the pudding: after being consistently in and out of jail since he was a teenager, he hadn’t been so much as arrested since his NDIS package commenced. I’ve never met a worthier poster child for the NDIS. His treating team, however, found both him and his support coordinator difficult to deal with. So it applied to the civil and administrative tribunal to have the Public Guardian take over his NDIS decision-making. At law, guardianship orders can only be made when there is positive evidence that a person lacks the capacity to make decisions. Yet in my experience, treating teams would make applications when their patients were making NDIS decisions the teams simply didn’t agree with. Eventually we persuaded the tribunal to dismiss the applications, though not without a fight and fifteen pages of written submissions.

Some treating teams would refuse to abide by tribunals’ dismissals of their guardianship applications. Upon having their applications dismissed, they would simply make new ones. My client in the paragraph above had endured four such applications by the time I met him. Another client, who had a severe intellectual disability, had been subject to rolling guardianship applications by his doctors. After removing him from his mother’s care as a child, the Department of Child Safety had placed him in a now-notorious children’s home, in which he endured seven years of physical and sexual abuse. When he turned eighteen, the Public Guardian simply warehoused him in a locked facility operated by the Department of Disability Services for almost a decade, before his mother first won guardianship back and then got him out of the secure facility, after which his behaviour – hitherto deemed intractably bad by his treating team – began to improve. But his doctors didn’t like his mother. So they tried over and over again – five times, by our first meeting – to have his guardianship returned to the Public Guardian. Within a month of the tribunal’s most recent decision, which appointed his mother as guardian for the maximum period (five years), his doctors made yet another application, causing his mother to waste valuable time and energy fighting a legal battle with his doctors – time she should have been using to find him somewhere stable to live.

In my view, the only possible description of a lot of what occurs in the public mental health and disability systems is systems abuse: the use of bureaucratic and legal systems to deny vulnerable people agency and punish them for not fully cooperating with their doctors’ demands. Of course there are the #notallpsychiatrists caveats. But in my own twelve-month experience the exceptions were rare enough to prove the rule. It was remarkable how much a humane psychiatrist could improve the experiences of people living under involuntary treatment orders. Invariably, these (rare) doctors were better able to educate their patients and observe “insight,” allowing patients to express frustrations without punishing them. But such doctors existed despite the systems they worked in, not because of them. From what I could tell, the systems also did a very poor job of supporting their own staff, including their doctors, whose standard shifts are often twelve hours long, and who – even before Covid-19 – were routinely required to work truly ridiculous hours. Doctors are, ironically, at much-elevated risk of suicide themselves. These systems are less about treatment and wellness for public mental health patients and disability clients than they are about maintaining a sense of controlled order for the rest of us.

I’m not for a moment suggesting that schizophrenia and other mental illnesses aren’t difficult to treat. But it’s hard to accept that we’re making even adequate use of the abundant collective resources available to us, given that Australia is among the richest handful of states on the planet (on a per capita basis). Even if patients do need to be detained and force-injected, can’t it be done with at least a modicum of humanity?

Krasnostein observes that “approximately 3189 people presented at the Austin Health emergency department for mental health issues” in 2018–19. I was one of them, taken there with significant “suicidal ideation.” I’d never been suicidal before and haven’t since. I was ultimately diagnosed with an “adjustment disorder,” which apparently can be triggered by stress. I’ve made sure I haven’t worked as hard as I was working in 2018. Melbourne’s mental health system is light years ahead of those in Katherine (where I was living at the time), Darwin or Adelaide (where I now live). Still, as Krasnostein convincingly argues, it’s far from what it should be. Emergency departments seem designed to erode the mental health of patients (by preventing them from sleeping) and staff. The secure psychiatric unit I found myself in for a few nights keeps people alive, mainly by frequent surveillance and the absence of hanging points, but it also seems designed to enhance depression. What helped me enormously was a four-week rent-free stay in a Prevention and Recovery Care (PARC) service house in Heidelberg Heights. Staffed round-the-clock by qualified mental health workers, the PARC house looks like an ordinary (if large) suburban house from the outside. Inside, ordinary people spend valuable weeks in the company of others, cooking, talking and recovering.

But outside the PARC houses – there really should be a lot more of them – society at large is being transformed into a gigantic factory for the production of mental illness. Stable housing is now practically impossible for a large and growing segment to come by. Employment standards and conditions in the private sector are worsening. Means-tested barriers to basic social security are fortified by remarkably complex bureaucratic requirements which cause many to simply give up.

The factory analogy seems confirmed by the apparent lack of any interest in prevention and early intervention. My partner, a social worker, has spent the last six months trying in vain to refer one of her clients – a teenage boy with classic signs of early psychosis – into a Headspace program which is funded on the basis that it provides “outreach” to its clients’ homes. She knows what the current research says about the importance of getting teenagers quickly into treatment as soon as psychosis presents: in the most hopeful cases, early treatment can prevent a diagnosis of schizophrenia and a lifetime of inpatient stays in the adult public mental health system. Despite its “outreach” component, Headspace – the federal government’s flagship youth mental health service – has required this boy to present to its offices, “to demonstrate a commitment to therapy.” After multiple, confusing “intake” conversations at Headspace, during which he was asked the same questions over and over again, he told my partner he didn’t want to pursue the referral. His future is not bright.

Another teenage boy has already been to court on multiple occasions for very serious domestic violence incidents. In and out of custody, he’s also begun to say some very strange things, suggestive of psychosis. He says he doesn’t want to hurt the people he loves, but recognises that he’ll probably continue to do so unless he gets help. The system’s only response so far, despite Herculean efforts by his lawyer (not me) and the youth court to have him referred to appropriate services, has been to arrest him and incarcerate him. Police now routinely verbally abuse him and goad him into physical confrontation, so they can justify using force against him. Various funded services – both government and non-government – have said he’s unsuitable for their assistance, or that their waiting lists are too long. In her essay, Krasnostein gives us a glimpse into his likely future, and the future for any women who get close to him.

Russell Marks