Back to the future: Schizophrenia in retrospect and prospect

In the early 1980s when I was a trainee psychiatrist, people with schizophrenia were treated for substantial periods in Dickensian asylums, and, if they made it to outpatients, attended what were essentially medication or ‘depot’ clinics or poorly trained general physicians (GPs). Newly diagnosed patients were informed by psychiatrists, with a pathological honesty not even seen in oncology or in chronic medical disease, that they would never recover, that they had a deteriorating form of mental illness and they and their family should adjust to this new future. That is – give up. No family support was provided, and families were even regarded as partly responsible for having caused the illness or for creating a ‘high expressed emotion’ family climate which caused relapses. Patients were typically admitted in life-threatening crises following aggression or self-harm with police involvement, and after inexcusably long delays, often years.

This was a culture of decay and despair. While there were many dedicated and sometimes inspiring clinicians, in the isolated world of the mental hospital, the quality of medical staff was variable, and assaults on patients by nursing staff were not uncommon. A lack of transparency enabled corruption to flourish in many places. Doses of antipsychotic medication were grossly excessive, thanks to an American fad termed ‘rapid neuroleptisation’, based on the principle ‘if some is good, more is better’. Many patients died, and suffering was immense. The experience of the period following the discovery of antipsychotic medications had been forgotten: namely that the dose for clinical response was very close to or below the dose at which the first subtle signs of extrapyramidal side effects could be divined via the simple handwriting test. There was almost no evidence-based psychosocial care available and no systematic research in schizophrenia was being conducted in Australia. There was no consensus regarding the nature of schizophrenia and futile and destructive reductionist battles occurred between the white collar psychoanalysts, who were still ascendant, and the then blue collar ‘organic’ psychiatrists, soon to dominate and overreach. Psychiatrists were openly ridiculed by their medical colleagues, and were even suspected of being mentally unstable themselves. Derided as ‘trick cyclists’, the alienists were perceived as almost as alien as their patients. When I decided to switch from internal medicine to psychiatry, perhaps a dozen of my colleagues tried to persuade me not to waste my life and career on ‘those people’. Psychiatry was in a time warp. It is hard to suggest that there has not been progress since then, and I leave the reader to judge how much, but I believe it has flattered to deceive.

Since the early 1980s, we have seen the governance of mental health care shift with the closure of standalone mental hospitals to acute general hospitals with dramatically fewer beds. These changes were welcomed and accepted on the promise that vital new evidence-based community mental health services would be adequately resourced and expanded in the face of population growth, stigma reduction and rising community expectations. At first, this seemed to be a new dawn and things undoubtedly began to get substantially better. Australian innovation in community mental health and early intervention was at the cutting edge of world psychiatry. However, this new dawn turned out to be a false one, as complacency seeped in and creativity faded. In fact, it shifted from the State to the Federal arena where reforms in mental health did continue from the primary care end of the spectrum. The public can see all too clearly now that this reform, with its enormous potential, has been allowed to subside into failure through neglect and poor design. The changes have proven to be substantially cosmetic. The inpatient experience of patients and staff is now arguably as traumatic and coercive as it was in the 1980s, and community care is minimalistic, inaccessible and seen as discretionary. Failure to acknowledge the scale of the need, combined with a lack of ring fencing of mainstreamed mental health budgets and a predictable lack of commitment by the Boards and CEOs of big hospitals to community mental health care, means that already inadequate systems are further eroded, with a doubling down on an increasingly desperate acute system. Evidence-based psychosocial interventions, which now exist thanks to extensive clinical research, are simply not offered and tenure of care is brief, crude and limited to risk management. Conservative, collusive and ultimately incorrect advice to government from within our own ranks has helped to justify inadequate resourcing and sold patients tragically short. The latest example is reflected in the loss of coverage resulting from the National Disability Insurance Scheme (NDIS). Another example of mainstreaming which is marginalising the mentally ill.

The tension within this diminishing world has reached a dangerous tipping point. The human rights of patients have been acknowledged, and there is appropriate respect for them as people. The compelling logic and overwhelming evidence base of early intervention, plus the momentum of the recovery model for later stages of illness have together finally given the lie to the notion of inevitable deterioration and realistically raised expectations. Yet the gap between what is possible and what is available is a national and international tragedy and disgrace. Appalling physical health outcomes and premature death are another facet of this discrimination and neglect. Lives and futures are lost every day because of this implementation failure.

The utility and risks of the schizophrenia diagnosis continue to be debated. The traditionalists still keep the faith with the Kraepelinian dichotomy. Others are mapping a new path with more flexibility. I have always been in the second camp which regards the Kraepelinian dichotomy as a failed paradigm which refuses to die (McGorry, 1991). It was Rob Barrett who pointed out that the long discredited 19th-century concept of degeneration sits at its dead heart. The early psychosis strategy sought to reposition yet retain and detoxify terms like schizophrenia, to ‘first do no harm’ and simplify and stage diagnosis to guide treatment selection and protect patients from premature closure on course and outcome. Catts and O’Toole (2016), strong proponents of early intervention, yet oddly defenders of Kraepelinian schizophrenia, seem to have misunderstood this. Premature closure which emphasises the chronicity of schizophrenia, while underestimating the iatrogenic impact of this approach is not necessary to assure sustained evidence-based treatment and is harmful. The search for diagnosis with utility has led to a heuristic approach which is staged and transdiagnostic (McGorry et al., 2006). Terms like schizophrenia for now may still have a place, but not in the early stages of illness where syndromal clarity and stable outcomes have not yet been manifested.

Schizophrenia is undoubtedly a diagnosis with baggage, and there is renewed momentum to replace the term with a new one with some success (Henderson and Malhi, 2014). The stigma associated with schizophrenia is typically linked to its association in the public mind with violence, a consequence, when it occurs, of late or inadequate treatment. However, I believe the stigma derives much more from the pessimism which is intrinsic to the concept. It creates and fuels ‘the soft bigotry of low expectations’. Kraepelin made a fundamental mistake after failing to find the kind of macroscopic brain changes that had been linked with Alzheimer’s disease. Seeking a proxy for what he saw as an early dementia, he grouped the poor outcome cases and worked backwards. He later recanted, since there were exceptions which disproved the rule, but no one took much notice. The fundamental flaw was one of logic, and the iatrogenic effects have been lethal over the years, in suicidal deaths and abandoned futures. When effective treatment and hope were introduced for tuberculosis, for leprosy and for many cancers, stigma melted away.

All is not lost by any means. During the past 30 years, beginning with the National Health and Medical Research Council (NHMRC) Schizophrenia Research Unit in 1988, Australian schizophrenia researchers have made enormous contributions and have become leaders of the international field. Australian psychiatry, inspired by Gavin Andrews’ (1984) visionary Quality Assurance Project, has fully committed to evidence-based care for schizophrenia. The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has produced two sets of clinical guidelines which echo the National Institute for Health and Care Excellence (NICE) guidelines in the United Kingdom. Yet thanks to two major national surveys, we are acutely aware that the health and social status of people with schizophrenia has barely improved over the years and is far below what is possible. This is implementation failure in spades. Incredibly, despite 25 years since the early psychosis reform began, we still lack early intervention services in most communities, and even the embryonic early psychosis platforms that were finally being built were nearly dismantled in 2016, despite being arguably the most evidence-based and cost-effective service model that psychiatry has created so far. Hard-won evidence-based interventions, cognitive behavioural therapy (CBT) for psychosis, individual placement and support (IPS), assertive community treatment (ACT) and family interventions are more honoured in the breach than the observance. Tenure and depth of longer-term specialist care is short, and acute care has been limited to management of risk with the inevitable retreat to coercion. The Victorian government has been the first to admit that there has been serious underinvestment in specialist mental health care. Despite this stark diagnostic assessment, I am convinced this chronic crisis situation is completely salvageable, since all the elements for optimal care still survive or have emerged through Australian innovation, and with sufficient resources and the force of will, can be restored, redesigned and widely deployed. What is needed is more unified and potent advocacy, and for the RANZCP and psychiatrists collectively to unite with full authority around what is clear and agreed and to campaign fiercely for transformational reform alongside our patients and their families and our colleagues.