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Neglecting the care of people with schizophrenia: here we go again

Published online by Cambridge University Press:  20 February 2023

Anthony J. Pelosi*
Affiliation:
Priory Hospital, Glasgow G41 3DW, UK
Vijay Arulnathan
Affiliation:
Whyteman's Brae Hospital, Kirkcaldy KY1 2NA, UK
*
Author for correspondence: Anthony J. Pelosi, E-mail: [email protected]
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Abstract

Specialist early intervention teams consider clinician–patient engagement and continuity of care to be a driving philosophy behind the treatment they provide to people who have developed schizophrenia or a related psychotic illness. In almost all countries where this service model has been implemented there is a dearth of available data about what is happening to patients following time-limited treatment. Information on discharge pathways in England indicates that some early intervention specialists are discharging most of their patients from all psychiatric services after only 2 or 3 years of input. Some ex-patients will be living in a state of torment and neglect due to an untreated psychosis. In the UK, general practitioners should refuse to accept these discharge pathways for patients with insight-impairing mental illnesses.

Type
Review Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
Copyright © The Author(s), 2023. Published by Cambridge University Press

During the last two decades, specialised early intervention teams have become a core part of psychiatric services in Australia, Canada and the UK. Their vaunted success has influenced policymakers around the world, leading to widespread roll-out of this model of care (Asian Network of Early Psychosis Writing Group, 2012; Cocchi et al., Reference Cocchi, Cavicchini, Collavo, Ghio, Macchi, Meneghelli and Preti2018; Csillag et al., Reference Csillag, Nordentoft, Mizuno, Jones, Killackey, Taylor and McDaid2016; Roe et al., Reference Roe, Mashiach-Eizenberg, Garber Epstein, Yamin, Hoter Ishay and Zisman-Ilani2021; Stefanis, Reference Stefanis2022). These teams provide ‘the gold standard treatment for first-episode psychosis’ and are considered the ‘Jewel in the Crown’ of English psychiatry (French, Reference French2018; Puntis et al., Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020a, Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020b). Their main role has been to treat promptly teenagers and young adults who have newly developed any of the overlapping conditions of schizophrenia, schizoaffective disorder, delusional disorder, affective psychosis, or other non-specified psychotic illness. The teams have protected caseloads to allow time to engage with patients and families and to deliver a range of community-based psychological and social interventions. Antipsychotic medication is used although the dosage of these powerful but dangerous medicines is kept to a minimum. Input is time limited, with an aim to discharge all patients after 3 years.

The rationale rests upon an influential hypothesis that the first 3 years is ‘the critical period’ in psychotic illnesses (Birchwood, Todd, & Jackson, Reference Birchwood, Todd and Jackson1998). This predicts that high-quality input during these initial years will lead to better outcomes and, for some patients, will even bring about full recovery (Jackson et al., Reference Jackson, Baggott, Bernard, Clutterbuck, Ryles and Turner2019). There have been concerns that improved outcomes may not be maintained following discharge or transfer of care (Allison, Bastiampillai, Malhi, & Castle, Reference Allison, Bastiampillai, Malhi and Castle2019; Bosanac, Patton, & Castle, Reference Bosanac, Patton and Castle2010; Gafoor et al., Reference Gafoor, Nitsch, McCrone, Craig, Garety, Power and McGuire2010; Gallagher et al., Reference Gallagher, Ferrara, Pollard, Yoviene Sykes, Li, Imetovski and Srihari2022; Hyatt, Hasler, & Wilner, Reference Hyatt, Hasler and Wilner2022; Jones et al., Reference Jones, Gius, Daley, George, Rosenblatt and Shern2020; McGorry, Ratheesh, & O'Donoghue, Reference McGorry, Ratheesh and O'Donoghue2018; Pelosi & Birchwood, Reference Pelosi and Birchwood2003; Puntis et al., Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020a) and that ‘the duration of treatment that [specialised early intervention] teams offer to patients is not sufficiently long enough to consolidate the therapeutic gains made during treatment…’ (Puntis et al., Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020a). These issues have been examined in recently published Cochrane reviews of international randomised controlled trials (RCTs) and in an important observational study of psychiatric services in Oxfordshire, England (Puntis et al., Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020a, Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020b; Puntis, Oke, & Lennox, Reference Puntis, Oke and Lennox2018).

Specialised early intervention v. treatment as usual

The first Cochrane meta-analysis included three RCTs (from Denmark, Norway and England) and one cluster-RCT (from the USA) with treatment duration of 18 or 24 months. Those treated by the specialised teams had fewer hospital admissions and readmissions and fewer relapses. Hallucinations, delusions and thought disorder were less severe as were the disabling negative symptoms of psychosis such as lack of drive and motivation, blunting of emotions, social withdrawal and poverty of speech and thought. These patients had a better overall quality of life and better general functioning. They reported greater satisfaction with their care. Also, they were more likely to be in education or employment by the end of the study. ‘Recovery’, which involved a combination of symptom stability and improved social attainment, was a co-primary outcome. At the end of treatment in two of the trials, 70% of the specialised care patients were ‘in recovery’ compared with 52% of the controls (Craig et al., Reference Craig, Garety, Power, Rahaman, Colbert, Fornells-Ambrojo and Dunn2004; Grawe, Falloon, Widen, & Skogvoll, Reference Grawe, Falloon, Widen and Skogvoll2006).

The other specified primary outcome was disengagement from psychiatric services. Across three studies, 24 out of 344 (7%) patients disengaged from the specialised services; 43 of 286 (15%) disengaged from treatment as usual. The Cochrane Collaboration team considered this to be their most confident and most important finding (Puntis et al., Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020b).

This conservative meta-analysis supports Correll et al.'s earlier systematic review of 10 heterogeneous RCTs (from Denmark, England, Hong Kong, Italy, Mexico, Spain and the USA) involving more than 2000 participants. There were ‘small-to-medium’ therapeutic gains across the board in clinical and social domains with specialised early intervention (Correll et al., Reference Correll, Galling, Pawar, Krivko, Bonetto, Ruggeri and Kane2018). The co-primary outcome of psychiatric hospital admission showed that 32% of the specialised care patients were hospitalised at least once compared with 42% of the control participants. Disengagement from psychiatric care was, once again, a primary outcome and favoured the specialised teams; in the combined studies, 21% discontinued treatment compared with 31% of those randomised to treatment as usual (Correll et al., Reference Correll, Galling, Pawar, Krivko, Bonetto, Ruggeri and Kane2018).

Extended specialised early intervention v. specialised early intervention + treatment as usual

In the second Cochrane meta-analysis, extended specialised intervention lasting for a total of 3 years in a trial in Hong Kong (160 participants) and for 5 years in trials in Canada and Denmark (220 and 400 participants) was compared with 2 years of early intervention followed by treatment as usual (Puntis et al., Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020a). Clinically and statistically significant differences did not emerge in measures of hallucinations, delusions, thought disorder, negative symptoms, depressed mood, general functioning and education or employment status. However, satisfaction with care which was assessed only in the Danish trial (Albert et al., Reference Albert, Melau, Jensen, Emborg, Jepsen, Fagerlund and Nordentoft2017) was substantially greater with the extended treatment package. Symptom remission was used as a proxy for the co-primary outcome of ‘recovery’. The RCT in Hong Kong found 78% in remission following extended specialised care compared with 68% of those who received specialised care only for the standard 2 years (Chang et al., Reference Chang, Chan, Jim, Lau, Hui, Chan and Chen2015). The other two trials were less encouraging. In the Canadian study, 43% were in remission following 5 years of specialised care compared with 38% of those who received 2 years of specialised then 3 years of ‘regular’ care (Malla et al., Reference Malla, Joober, Iyer, Norman, Schmitz, Brown and Abadi2017). A disappointing 22.3% v. 21.6% were in remission at the end of the 5-year long Danish trial (Albert et al., Reference Albert, Melau, Jensen, Emborg, Jepsen, Fagerlund and Nordentoft2017).

The other primary outcome was disengagement from treatment. Yet again, this was the most clear and confident finding. Across two of the studies (Chang et al., Reference Chang, Chan, Jim, Lau, Hui, Chan and Chen2015; Malla et al., Reference Malla, Joober, Iyer, Norman, Schmitz, Brown and Abadi2017), 28 of 192 (15%) patients who received extended specialist care left the trials early compared with 63 of 188 (34%) control patients (Puntis et al., Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020a). At the end of the Danish trial, 90% were in contact with the extended early intervention teams compared with only 56% in contact with services if they had been moved on to treatment as usual (Albert et al., Reference Albert, Melau, Jensen, Emborg, Jepsen, Fagerlund and Nordentoft2017).

It is not surprising that disengagement from treatment has been used as a pre-specified primary outcome. Early intervention specialists have proposed that ‘…the success of EI services is in part due to their emphasis on establishing and maintaining an individual's engagement with the service’ and they consider this a ‘driving philosophy’ of their approach (Birchwood, Reference Birchwood2014; Kim et al., Reference Kim, Brown, Reynolds, Geros, Sizer, Tindall and O'Donoghue2019; Tindall, Simmons, Allott, & Hamilton, Reference Tindall, Simmons, Allott and Hamilton2018). In clinical practice, every effort is made to prevent disengagement. For example, in Norfolk, Suffolk and Cambridgeshire in the East of England,

‘[p]articipants were considered as having disengaged with services after all possible ways to engage them had been explored by the clinical team. These included: appointment letters, phone calls, text messages, emails, home visits and contact with family, friends and other health, education and social care providers. This process involved several attempts (usually at least six to eight attempts over a 2–3 month period)’ (Solmi et al., Reference Solmi, Mohammadi, Perez, Hameed, Jones and Kirkbride2018).

There has been splendid qualitative and quantitative research on factors that may predict disengagement (Doyle et al., Reference Doyle, Turner, Fanning, Brennan, Renwick, Lawlor and Clarke2014; Kim et al., Reference Kim, Brown, Reynolds, Geros, Sizer, Tindall and O'Donoghue2019; Mascayano et al., Reference Mascayano, Van Der Ven, Martinez-Ales, Basaraba, Jones, Lee and Dixon2020, Reference Mascayano, Van Der Ven, Martinez-Ales, Henao, Zambrano, Jones and Dixon2021; Polillo et al., Reference Polillo, Voineskos, Foussias, Kidd, Bromley, Soklaridis and Kozloff2022; Tindall et al., Reference Tindall, Simmons, Allott and Hamilton2018) and an ambitious cluster-RCT of a team-based motivational intervention to improve engagement is well underway in first-episode psychosis teams around England (Greenwood et al., Reference Greenwood, Webb, Gu, Fowler, De Visser, Bremner and Peters2021; ISRCTN registry, 2021). The importance of service engagement for this patient group is summarised well in the trial's plain language summary: ‘at least a quarter of all young people drop out of services in the first 12 months, leading to greater risk of poor health and more long-term service use. Families also struggle more’ (ISRCTN registry, 2021).

Treatment as usual

As is so often the case in health services research, there has been a lack of proper attention to ‘treatment as usual’. The published trials tend to provide only cursory descriptions. These have been drawn together by Correll et al. in a helpful supplementary table that provides some idea of what well-resourced multidisciplinary teams were compared with (Correll et al., Reference Correll, Galling, Pawar, Krivko, Bonetto, Ruggeri and Kane2018). This was mainly old-fashioned office-based appointments with a psychiatrist and/or a nurse. In the Canadian trial of extended early intervention, step-down was either to psychiatric hospital outpatient services or care from a family physician that was, according to the researchers, ‘of variable quality and intensity’ (Lutgens et al., Reference Lutgens, Iyer, Joober, Brown, Norman, Latimer and Malla2015; Malla et al., Reference Malla, Joober, Iyer, Norman, Schmitz, Brown and Abadi2017). It is worrying that, ‘[w]hile transfer to regular care was started within two weeks of randomization, it was dependent on the ability and policies of receiving services and often involved considerable delays (mean 25.7 ± 16.1 weeks)’ (Malla et al., Reference Malla, Joober, Iyer, Norman, Schmitz, Brown and Abadi2017). Another description of treatment as usual, ‘…out-patient medical follow-up with limited community support which focused mainly on crisis intervention’ (Chang et al., Reference Chang, Chan, Jim, Lau, Hui, Chan and Chen2015), encapsulates perhaps the worst imaginable – and all too common – approach to the management of people with schizophrenia and other psychoses.

Discharge from specialist early intervention services

Treatment as usual in the two British randomised trials did, at least, involve input from multidisciplinary community mental health teams (Craig et al., Reference Craig, Garety, Power, Rahaman, Colbert, Fornells-Ambrojo and Dunn2004; Kuipers, Holloway, Rabe-Hesketh, & Tennakoon, Reference Kuipers, Holloway, Rabe-Hesketh and Tennakoon2004). But this brings us to what has been happening to patients who were under the care of the early intervention for psychosis services in Oxfordshire between 2006 and 2017 (Puntis et al., Reference Puntis, Oke and Lennox2018). The average length of treatment for 701 patients was 1 year and 8 months – even though the stipulated period of involvement was 3 years. No less than 83.5% of the patients were discharged directly to their general practitioners. The remainder were transferred to other psychiatric services.

After a year, about a quarter of those who had been transferred to other psychiatric teams had relapsed; relapses in this group plateaued at close to 50% after 4–5 years. General practitioners referred almost a third of the discharged patients back to psychiatry within 2 years. About 10% of those discharged to primary care are known to have relapsed in the first year with identified relapses plateauing around 15% after about 4 years. Relapse was defined as being admitted to psychiatric hospital or being treated by the crisis resolution and home treatment teams whose role is to head off admission when this would otherwise be required. These episodes could be identified from Oxfordshire's computerised health records system. The problem with this proxy for relapse is that it misses those who deteriorate but do not come to the attention of clinicians. It is a hallmark of psychotic illnesses that insight can be impaired when patients relapse. Symptoms such as paranoid delusions can lead to active avoidance of all assistance. Loss of volition, emotional blunting and poverty of thought reduce the ability to seek help. Based on painful clinical and research experience (Boeing et al., Reference Boeing, Murray, Pelosi, McCabe, Blackwood and Wrate2007; Murray, Walker, Mitchell, & Pelosi, Reference Murray, Walker, Mitchell and Pelosi1996), we can safely assume that some of these people are sitting at home in a state of quiet neglect listening to hallucinatory voices, with kitchen drawers full of unopened packets of antipsychotic tablets and a relapse management plan that has been untouched since the day they were discharged from assertive community care. Some ex-patients will no longer have a home (Lynch, Reference Lynch2020; Marshall, Reference Marshall1989; Marshall & Gath, Reference Marshall and Gath1992).

There is wide variation in the proportion of those who are discharged from all psychiatric services by early intervention teams in England. This has been happening to 47% of patients in Leicester and 55% in Derbyshire (Ahmed, Peters, & Chakraborty, Reference Ahmed, Peters and Chakraborty2019; Phillipson, Akroyd, & Carley, Reference Phillipson, Akroyd and Carley2014). A recent article reveals that fully three-quarters were discharged by an inner-city London Trust after, on average, 28 months of care (Puntis, Whiting, Pappa, & Lennox, Reference Puntis, Whiting, Pappa and Lennox2021). A conference presentation by leaders in the field from the Birmingham and Solihull National Health Service Trust reported that this happened to 47% of patients in North-West England, 58% in Cornwall, 74% in Norfolk and 77% in Cambridge. The Birmingham and Solihull early intervention services were discharging a third of patients directly to primary care but the theme of their rather jaunty lecture was that they ‘must do better’ and increase this number (Turner & Rainey, Reference Turner and Raineyundated).

We have sought advice from colleagues working in Canada and Australia and have searched journal articles, book chapters and the ‘grey’ literature but there seems to be no equivalent available information about discharge practices in other parts of the world. We have also raised questions about this issue at online international and national conferences. Sorry to say, but there is an unfathomable complacency amongst British early intervention specialists about the fate of their erstwhile patients. We have not picked up such an attitude amongst clinicians and researchers from other countries and this is reflected in some of the published qualitative research.

Due to gaps in routine data collection, patients' discharge destinations were not documented for the recent detailed evaluation of early psychosis youth services (called headspace) around Australia (Ernst & Young Australia, 2020). However the qualitative findings are telling. Half of those patients who were aware that they were soon to be discharged ‘expressed great concern about what support would be available post discharge’.

One parent was not quite able to put all her concerns into words:

‘…once she leaves the program I want, I want to know where she should go…for some sort of guidance, you know, for the future…Yeah at the moment she went to headspace, headspace is looking after her, but you know, when this program finishes she has to go somewhere else, because I believe that there's not going to umm, it is a long-term thing so there will be some sort of ongoing support required…Yeah. That is the worry I have, once she finishes headspace, what do we do’ (Ernst & Young Australia, 2020).

Another stated:

‘That would be really critical and important for us and our peace of mind because at the moment she's looked after well by headspace, but suddenly that support goes, you know we have got to have some backup.’

A patient summed up their fears as follows:

‘I'm just scared for the future because I'm 25 now, so not going to be with headspace…So I haven't actually talked to anyone about what I'm going to do’ (Ernst & Young Australia, 2020).

Specialist teams in North America are having to navigate the complexities in care pathways that come with various mixes of public and private health care provision and separate funding of early intervention services. One group in Halifax, Nova Scotia are discharging about a third of their patients to primary care (Tibbo, Reference Tibbo2022). They provide ongoing support to the receiving general practitioners and offer informal phone contacts to discharged patients about whom they are worried; they are understandably anxious about the adequacy of such an arrangement (Tibbo, Reference Tibbo2022). Services in New Haven, Connecticut have reported on several cycles of a quality improvement project to improve ‘this first critical hand off in care’(Gallagher et al., Reference Gallagher, Ferrara, Pollard, Yoviene Sykes, Li, Imetovski and Srihari2022). They describe good liaison with receiving clinicians. Their ongoing Plan-Do-Study-Act cycles have led, so far, to a reduction from 51% to 26% in the proportion of patients whose 3-month care status is unknown.

Jones et al. (Reference Jones, Gius, Daley, George, Rosenblatt and Shern2020) have interviewed clinicians, administrators and patients from early intervention services [which they call coordinated specialty care (CSC)] at 36 sites around the USA. They found ‘tremendous variability of discharge practices and policies…’. There were examples of excellent practice. For example, a handful of sites could provide stepped down care from patients' previous therapists and prescribers. One site had ‘clinically oriented follow-up to ensure (or assess) the success of the transition’. However, individuals who were poised to be discharged from some of the programmes expressed concerns about the fixed time limits on their participation. One of the themes that emerged from patient interviews was that,

‘..they appeared to view discharge from CSC as entailing the permanent loss of access to close therapeutic relationships, whether because of cost, access, or standards of care’ (Jones et al., Reference Jones, Gius, Daley, George, Rosenblatt and Shern2020).

Providers shared these concerns. In some areas, it was not possible to access ongoing care from psychiatrists who were comfortable treating psychosis and there could be difficulties ensuring continuing prescription of long-acting injectable antipsychotics and even clozapine.

These researchers provide worrying quotes from professionals and patients that nicely illustrate the theme of inadequate follow-up once separately funded CSC came to an end. Staff at one site,

‘…did kind of an informal calling back to say like, ‘Hey, how are you doing? What's happening?’ and almost nobody had continued in outpatient care. It's a handful, maybe two or three [out of 20 successfully contacted]. And those were the ones with more active family members. They expressed several things. One, that none of the programs they went to were ever like [CSC program] and they wanted to come back to [CSC]…And more than 50% have already dropped out of the care that they had been connected to: they couldn't get the appointments. So, the desire to get care was there, but they were dissatisfied with what they were able to get.’

The frustration of some clinicians emerged clearly:

‘Someone could be in this program functioning beautifully…but then once they leave…they lose it. Suddenly they think they don't need meds anymore…and no one's there to catch them…We've had a lot of really heartbreaking cases like that’ (Jones et al., Reference Jones, Gius, Daley, George, Rosenblatt and Shern2020).

Here we go again

The approach of time-limited resource intensive intervention followed by rapid stepdown of care has parallels with how people with schizophrenia and related psychotic illnesses were treated in the heyday of asylum care. In the UK, there was decent enough multidisciplinary care in acute admissions wards. But those who did not then remain settled with psychiatric outpatient and general practitioner appointments would end up being ‘warehoused’ in horrible and sometimes disgusting back wards of mental hospitals (Pelosi, Reference Pelosi1993). Things became even worse when moves began towards care in the community – and nobody had a clue how to deliver this (Lancet, 1985; Murphy, Reference Murphy1991; Ritchie, Dick, & Lingham, Reference Ritchie, Dick and Lingham1994). Elaine Murphy's After the Asylums, published in 1991, had a chapter entitled ‘The Disaster Years, 1962–1990’. Referring to people who had been hospitalised for years, she wrote:

‘[w]e do know…that many of the arrangements made when patients first left hospital did not last longer than a few years. Circumstances change, relatives die, relationships do not work out as expected. Some who were discharged mentally well had further breakdowns. Many left their original discharge addresses and drifted into the large towns to live in lodging-houses and cheap hotels, seeking isolation and anonymity, persistently plagued by delusional ideas and troublesome hallucinatory voices. Some ended up in prison. No doubt there were many successes too but similarly we know almost nothing about them’ (Murphy, Reference Murphy1991).

It is difficult to envisage how similar scenarios in countries throughout the world could be prevented by a brief period of treatment from clinicians who specialise solely in the early stages of severe and frequently enduring mental disorders.

Ongoing care in the community

Many patients who have gone through an episode of psychosis will do well. However, others will have a prolonged and severe and sometimes a devastating illness. It is not possible accurately to predict which patients these are. We are reluctant to give advice on how to provide proper ongoing care to these people in countries where we lack knowledge and experience of their health systems. Commenting on the findings of Jones et al. (Reference Jones, Gius, Daley, George, Rosenblatt and Shern2020), Canadian clinician researchers have written an article entitled ‘Moving from islands of order to a sea of chaos: Transitions out of early intervention services for psychosis’ (McIlwaine, Fuhrer, & Shah, Reference McIlwaine, Fuhrer and Shah2020). They make practical and deliverable suggestions on improving transitions that could be relevant to countries around the world and not just in North America. However,

‘[a]lthough innovations such as extending [early intervention for psychosis] or ‘stepped-down’ transitional approaches may help to facilitate smoother transfers between services, these strategies are far from solving the larger health care problem: that post-[early intervention for psychosis] mental health care is often ‘the opposite of recovery,’ expensive, inaccessible, agnostic to client needs, and thus a potential contributor to disengagement. Unfortunately, these issues coincide with other treatment, financial, and structural barriers encountered by those who could benefit from receiving psychopharmacologic or supportive, therapeutic care – barriers that themselves warrant further research to identify possible solutions to mitigate their negative effects and improve mental health care services in general’ (McIlwaine et al., Reference McIlwaine, Fuhrer and Shah2020).

Nobody, we hope, will disagree with those views nor with Jones et al. (Reference Jones, Gius, Daley, George, Rosenblatt and Shern2020) when they argue that,

‘…. [coordinated specialty care] represents a level of quality that should in fact characterize mental health services in general, as underscored by both staff and client concerns regarding the values and offerings of postdischarge services.’

We are able to give advice on how these transitions should be tackled in the UK – where there can be no excuse for any patient with a known psychotic illness to be discharged to a ‘sea of chaos’. No matter how stretched they are, general adult community mental health teams in Britain should insist on taking over the management of essentially every person who has had their couple of years (or less) of ‘gold standard treatment’ (Kirkbride et al., Reference Kirkbride, Hameed, Ankireddypalli, Ioannidis, Crane, Nasir and Jones2017; Lester et al., Reference Lester, Khan, Jones, Marshall, Fowler, Amos and Birchwood2012; Puntis et al., Reference Puntis, Minichino, De Crescenzo, Cipriani, Lennox and Harrison2020a, Reference Puntis, Whiting, Pappa and Lennox2021). These teams will be faced with yet more difficult decisions about the rationing of clinical resources. But given that 10% of discharged patients in Oxfordshire are known to have relapsed within a year and a third were referred back to psychiatric services within 2 years, it is likely that community mental health teams would save themselves time and would spare many patients and families from heartache if they routinely took on ‘this first critical hand off in care’. This will allow the establishment of coordinated, individualised and needs-based community care plans – and contingency plans – that are appropriate for people with insight-impairing illnesses and that can be sustained during good times and bad over the ensuing years and decades.

Should such patients be discharged from psychiatric services immediately following a brief period of intensive input, family doctors should take control. They should write to the consultant psychiatrist in the early intervention team agreeing, as always, to shared care of their patient but refusing to accept the discharge plan. Copy letters should be sent to the catchment area consultant general psychiatrist and the medical director of the local National Health Service Trust. This letter should point out that the proposed care pathway flies in the face of clinical experience, all the research evidence, and the findings of thousands of inquiries into critical incidents and community care tragedies (Reith, Reference Reith1998; Ritchie et al., Reference Ritchie, Dick and Lingham1994).

Early intervention treatment programmes around the world have been based upon on a hypothesis that the first 3 years of illness is the critical period in the course of schizophrenia and other psychotic illnesses (Birchwood et al., Reference Birchwood, Todd and Jackson1998). This is and always was a ridiculous hypothesis. The early months and years after onset are, of course, a critical period. But everybody knows that people with schizophrenia – and schizoaffective disorder and manic-depressive psychosis and delusional disorder and other psychoses – may encounter critical times throughout their illness journey. Well-resourced, well-coordinated multidisciplinary treatment from specialist mental health clinicians is required during each and every one of these periods, with continuing care that will help to prevent them.

Conclusion

Over the past 25 years, early intervention specialists have used modern public relations techniques and brilliant political skills to influence health care policy around the world (Allison et al., Reference Allison, Bastiampillai, Malhi and Castle2019; Bertolote & McGorry, Reference Bertolote and McGorry2005; Csillag et al., Reference Csillag, Nordentoft, Mizuno, Jones, Killackey, Taylor and McDaid2016; House of Commons, 2021; McGorry, Reference McGorry2015; Pelosi & Birchwood, Reference Pelosi and Birchwood2003; Stefanis, Reference Stefanis2022; The President's Office Republic of Maldives, 2022). But a short-term approach to psychiatry combined with self-imposed lack of clinical experience has meant that many of these clinicians have no understanding of the realities of providing care to patients with major mental disorders – for as long and intensively as required. They have closed their eyes and minds to the ongoing needs of their former patients and have somehow failed to notice one of the most worrying findings ever to emerge from mental health services research. In numerous areas across the UK, the most important factor in disengagement of people with insight-impairing illnesses from psychiatric care is planned and deliberate discharge by early intervention for psychosis teams (Ahmed et al., Reference Ahmed, Peters and Chakraborty2019; London Early Intervention in Psychosis Clinical Reference Group, 2016; Phillipson et al., Reference Phillipson, Akroyd and Carley2014; Puntis et al., Reference Puntis, Oke and Lennox2018, Reference Puntis, Whiting, Pappa and Lennox2021; Turner & Rainey, Reference Turner and Raineyundated). This may also be the case in Australia, Canada and the USA and, we fear, in other countries where well-intentioned policymakers have been influenced by the early intervention movement. Family doctors, general psychiatry teams, health service managers, advocacy organisations, politicians and patients and their families should do everything they can to put a stop to this unacceptable practice. Psychiatry can and really must do better.

Conflict of interest

None.

References

Ahmed, S., Peters, K. Z., & Chakraborty, N. (2019). Discharges from an early intervention in psychosis service: The effect of patient characteristics on discharge destination. Early Intervention in Psychiatry, 13(4), 740744. doi: 10.1111/eip.12552CrossRefGoogle ScholarPubMed
Albert, N., Melau, M., Jensen, H., Emborg, C., Jepsen, J. R. M., Fagerlund, B., … Nordentoft, M. (2017). Five years of specialised early intervention versus two years of specialised early intervention followed by three years of standard treatment for patients with a first episode psychosis: Randomised, superiority, parallel group trial in Denmark (OPUS II). BMJ, 356, i6681. doi: 10.1136/bmj.i6681CrossRefGoogle ScholarPubMed
Allison, S., Bastiampillai, T., Malhi, G. S., & Castle, D. (2019). Does early intervention prevent chronic psychosis? A question for the Victorian Royal Commission into Mental Health. Australian & New Zealand Journal of Psychiatry, 53(10), 943945. doi: 10.1177/0004867419873717CrossRefGoogle ScholarPubMed
Asian Network of Early Psychosis Writing Group (2012). Early psychosis declaration for Asia by the Asian Network of Early Psychosis. East Asian Archives of Psychiatry, 22(3), 9093.Google Scholar
Bertolote, J., & McGorry, P. (2005). Early intervention and recovery for young people with early psychosis: Consensus statement. British Journal of Psychiatry, 187(S48), s116s119. doi: 10.1192/bjp.187.48.s116CrossRefGoogle Scholar
Birchwood, M. (2014). Early intervention in psychosis services: The next generation. Early intervention in Psychiatry, 8(1), 12. doi: 10.1111/eip.12124CrossRefGoogle Scholar
Birchwood, M., Todd, P., & Jackson, C. (1998). Early intervention in psychosis. The critical period hypothesis. The British Journal of Psychiatry. Supplement, 172(33), 5359. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/9764127CrossRefGoogle ScholarPubMed
Boeing, L., Murray, V., Pelosi, A., McCabe, R., Blackwood, D., & Wrate, R. (2007). Adolescent-onset psychosis: Prevalence, needs and service provision. British Journal of Psychiatry, 190, 1826. doi: 10.1192/bjp.190.1.18CrossRefGoogle ScholarPubMed
Bosanac, P., Patton, G. C., & Castle, D. J. (2010). Early intervention in psychotic disorders: Faith before facts? Psychological Medicine, 40(3), 353358. doi: 10.1017/s0033291709990341CrossRefGoogle ScholarPubMed
Chang, W. C., Chan, G. H. K., Jim, O. T. T., Lau, E. S. K., Hui, C. L. M., Chan, S. K. W., … Chen, E. Y. H. (2015). Optimal duration of an early intervention programme for first-episode psychosis: Randomised controlled trial. British Journal of Psychiatry, 206(6), 492500. doi: 10.1192/bjp.bp.114.150144CrossRefGoogle Scholar
Cocchi, A., Cavicchini, A., Collavo, M., Ghio, L., Macchi, S., Meneghelli, A., & Preti, A. (2018). Implementation and development of early intervention in psychosis services in Italy: A national survey promoted by the Associazione Italiana Interventi Precoci nelle Psicosi. Early intervention in Psychiatry, 12(1), 3744. doi: 10.1111/eip.12277CrossRefGoogle ScholarPubMed
Correll, C. U., Galling, B., Pawar, A., Krivko, A., Bonetto, C., Ruggeri, M., … Kane, J. M. (2018). Comparison of early intervention services vs treatment as usual for early-phase psychosis. JAMA Psychiatry, 75(6), 555. doi: 10.1001/jamapsychiatry.2018.0623CrossRefGoogle ScholarPubMed
Craig, T. K. J., Garety, P., Power, P., Rahaman, N., Colbert, S., Fornells-Ambrojo, M., & Dunn, G. (2004). The Lambeth Early Onset (LEO) Team: Randomised controlled trial of the effectiveness of specialised care for early psychosis. BMJ, 329(7474), 1067. doi: 10.1136/bmj.38246.594873.7cCrossRefGoogle ScholarPubMed
Csillag, C., Nordentoft, M., Mizuno, M., Jones, P. B., Killackey, E., Taylor, M., … McDaid, D. (2016). Early intervention services in psychosis: From evidence to wide implementation. Early Intervention in Psychiatry, 10(6), 540546. doi: 10.1111/eip.12279CrossRefGoogle ScholarPubMed
Doyle, R., Turner, N., Fanning, F., Brennan, D., Renwick, L., Lawlor, E., & Clarke, M. (2014). First-episode psychosis and disengagement from treatment: A systematic review. Psychiatric Services, 65(5), 603611. doi: 10.1176/appi.ps.201200570CrossRefGoogle ScholarPubMed
Ernst and Young Australia (2020). Evaluation of the Early Psychosis Youth Services Program – Final report. Retrieved from https://www.health.gov.au/resources/publications/evaluation-of-the-early-psychosis-youth-services-program-final-reportGoogle Scholar
French, P. (2018). Conference presentation. Treatments for psychosis; how the NHS has pioneered new research and service models to improve outcomes. https://www.england.nhs.uk/north/wp-content/uploads/sites/5/2018/05/Paul-French.pdfGoogle Scholar
Gafoor, R., Nitsch, D., McCrone, P., Craig, T. K. J., Garety, P. A., Power, P., & McGuire, P. (2010). Effect of early intervention on 5-year outcome in non-affective psychosis. British Journal of Psychiatry, 196(5), 372376. doi: 10.1192/bjp.bp.109.066050CrossRefGoogle ScholarPubMed
Gallagher, K., Ferrara, M., Pollard, J., Yoviene Sykes, L., Li, F., Imetovski, S., … Srihari, V. H. (2022). Taking the next step: Improving care transitions from a first-episode psychosis service. Early Intervention in Psychiatry, 16(1), 9196. doi: 10.1111/eip.13127CrossRefGoogle Scholar
Grawe, R. W., Falloon, I. R. H., Widen, J. H., & Skogvoll, E. (2006). Two years of continued early treatment for recent-onset schizophrenia: A randomised controlled study. Acta Psychiatrica Scandinavica, 114(5), 328336. doi: 10.1111/j.1600-0447.2006.00799.xCrossRefGoogle ScholarPubMed
Greenwood, K., Webb, R., Gu, J., Fowler, D., De Visser, R., Bremner, S., … Peters, E. (2021). The Early Youth Engagement in first episode psychosis (EYE-2) study: Pragmatic cluster randomised controlled trial of implementation, effectiveness and cost-effectiveness of a team-based motivational engagement intervention to improve engagement. Trials, 22(1), 272. doi: 10.1186/s13063-021-05105-yCrossRefGoogle Scholar
House of Commons. (2021). Health and Social Care Committee. Oral evidence: Children and young people's mental health, HC 1194, 2021. Retrieved from https://committees.parliament.uk/oralevidence/2047/html/Google Scholar
Hyatt, A. S., Hasler, V., & Wilner, E. K. (2022). What happens after early intervention in first-episode psychosis? Limitations of existing service models and an agenda for the future. Current Opinion in Psychiatry, 35(3), 165170. doi: 10.1097/yco.0000000000000785CrossRefGoogle Scholar
ISRCTN registry (2021). ISRCTN51629746. Early Youth Engagement in First Episode Psychosis (EYE-2) randomised controlled trial. Retrieved from https://doi.org/10.1186/ISRCTN51629746CrossRefGoogle Scholar
Jackson, C., Baggott, E., Bernard, M., Clutterbuck, R., Ryles, D., & Turner, E. (2019). Recovering from a first episode of psychosis: An integrated approach to early intervention. Abingdon: Routledge.CrossRefGoogle Scholar
Jones, N., Gius, B., Daley, T., George, P., Rosenblatt, A., & Shern, D. (2020). Coordinated specialty care discharge, transition, and step-down policies, practices, and concerns: Staff and client perspectives. Psychiatric Services, 71(5), 487497. doi: 10.1176/appi.ps.201900514CrossRefGoogle Scholar
Kim, D. J., Brown, E., Reynolds, S., Geros, H., Sizer, H., Tindall, R., … O'Donoghue, B. (2019). The rates and determinants of disengagement and subsequent re-engagement in young people with first-episode psychosis. Social Psychiatry and Psychiatric Epidemiology, 54(8), 945953. doi: 10.1007/s00127-019-01698-7CrossRefGoogle ScholarPubMed
Kirkbride, J. B., Hameed, Y., Ankireddypalli, G., Ioannidis, K., Crane, C. M., Nasir, M., … Jones, P. B. (2017). The epidemiology of first-episode psychosis in early intervention in psychosis services: Findings from the Social Epidemiology of Psychoses in East Anglia [SEPEA] Study. American Journal of Psychiatry, 174(2), 143153. doi: 10.1176/appi.ajp.2016.16010103CrossRefGoogle ScholarPubMed
Kuipers, E., Holloway, F., Rabe-Hesketh, S., & Tennakoon, L. (2004). An RCT of early intervention in psychosis: Croydon Outreach and Assertive Support Team (COAST). Social Psychiatry and Psychiatric Epidemiology, 39(5), 358363. doi: 10.1007/s00127-004-0754-4CrossRefGoogle ScholarPubMed
Lancet (1985). Psychiatry – a discipline that has lost its way. Lancet, 1(8431), 731732.Google Scholar
Lester, H., Khan, N., Jones, P., Marshall, M., Fowler, D., Amos, T., & Birchwood, M. (2012). Service users’ views of moving on from early intervention services for psychosis: A longitudinal qualitative study in primary care. British Journal of General Practice, 62(596), e183e190. doi: 10.3399/bjgp12x630070CrossRefGoogle ScholarPubMed
London Early Intervention in Psychosis Clinical Reference Group. (2016). Early intervention in psychosis pathways. Guidelines for discharge and transfer of service users from EIP services to primary and continued mental health secondary care. Retrieved from https://myhealth.london.nhs.uk/wp-content/uploads/2019/02/GuidelinesfordischargeandtransferofserviceusersfromEIP-1.pdfGoogle Scholar
Lutgens, D., Iyer, S., Joober, R., Brown, T. G., Norman, R., Latimer, E., … Malla, A. (2015). A five-year randomized parallel and blinded clinical trial of an extended specialized early intervention vs. regular care in the early phase of psychotic disorders: Study protocol. BMC Psychiatry, 15(1), 22. doi: 10.1186/s12888-015-0404-2CrossRefGoogle Scholar
Lynch, D. (2020). Why are homeless rough sleepers still on the street? Oxford Mail, 15 October.Google Scholar
Malla, A., Joober, R., Iyer, S., Norman, R., Schmitz, N., Brown, T., … Abadi, S. (2017). Comparing three-year extension of early intervention service to regular care following two years of early intervention service in first-episode psychosis: A randomized single blind clinical trial. World Psychiatry, 16(3), 278286. doi: 10.1002/wps.20456CrossRefGoogle ScholarPubMed
Marshall, M. (1989). Collected and neglected: Are Oxford hostels for the homeless filling up with disabled psychiatric patients? BMJ, 299(6701), 706709. doi: 10.1136/bmj.299.6701.706CrossRefGoogle ScholarPubMed
Marshall, M., & Gath, D. (1992). What happens to homeless mentally ill people? Follow up of residents of Oxford hostels for the homeless. BMJ, 304(6819), 7980. doi: 10.1136/bmj.304.6819.79CrossRefGoogle Scholar
Mascayano, F., Van Der Ven, E., Martinez-Ales, G., Basaraba, C., Jones, N., Lee, R., … Dixon, L. B. (2020). Predictors of early discharge from early intervention services for psychosis in New York State. Psychiatric Services, 71(11), 11511157. doi: 10.1176/appi.ps.202000025CrossRefGoogle ScholarPubMed
Mascayano, F., Van Der Ven, E., Martinez-Ales, G., Henao, A. R., Zambrano, J., Jones, N., … Dixon, L. B. (2021). Disengagement from early intervention services for psychosis: A systematic review. Psychiatric Services, 72(1), 4960. doi: 10.1176/appi.ps.201900375CrossRefGoogle ScholarPubMed
McGorry, P. D. (2015). Early intervention in psychosis: Obvious, effective, overdue. Journal of Nervous & Mental Disease, 203(5), 310318. doi: 10.1097/nmd.0000000000000284CrossRefGoogle ScholarPubMed
McGorry, P. D., Ratheesh, A., & O'Donoghue, B. (2018). Early intervention – An implementation challenge for 21st century mental health care. JAMA Psychiatry, 75(6), 545. doi: 10.1001/jamapsychiatry.2018.0621CrossRefGoogle ScholarPubMed
McIlwaine, S., Fuhrer, R., & Shah, J. L. (2020). Moving from islands of order to a sea of chaos: Transitions out of early intervention services for psychosis. Psychiatric Services, 71(5), 514515. doi: 10.1176/appi.ps.202000150CrossRefGoogle Scholar
Murphy, E. (1991). After the asylums: Community care for people with mental illness. London: Faber.Google Scholar
Murray, V., Walker, H. W., Mitchell, C., & Pelosi, A. J. (1996). Needs for care from a demand led community psychiatric service: A study of patients with major mental illness. BMJ, 312(7046), 15821586. doi: 10.1136/bmj.312.7046.1582CrossRefGoogle Scholar
Pelosi, A. J. (1993). Psychiatric scandals at home and abroad. Journal of Mental Health, 2(1), 12. doi: 10.3109/09638239309016950CrossRefGoogle Scholar
Pelosi, A. J., & Birchwood, M. (2003). Is early intervention for psychosis a waste of valuable resources? British Journal of Psychiatry, 182(3), 196198. doi: 10.1192/bjp.182.3.196CrossRefGoogle ScholarPubMed
Phillipson, A., Akroyd, M., & Carley, J. (2014). Audit of discharges from a regional service in the United Kingdom. Early Intervention in Psychiatry, 8(1), 9197. doi: 10.1111/eip.12061CrossRefGoogle ScholarPubMed
Polillo, A., Voineskos, A. N., Foussias, G., Kidd, S. A., Bromley, S., Soklaridis, S., … Kozloff, N. (2022). Disengagement from early psychosis intervention services: An observational study informed by a survey of patient and family perspectives. Schizophrenia, 8(1), 94. doi: 10.1038/s41537-022-00300-5CrossRefGoogle ScholarPubMed
Puntis, S., Minichino, A., De Crescenzo, F., Cipriani, A., Lennox, B., & Harrison, R. (2020a). Specialised early intervention teams (extended time) for recent-onset psychosis. The Cochrane Database of Systematic Reviews, 11, CD013287. doi: 10.1002/14651858.CD013287.pub2Google ScholarPubMed
Puntis, S., Minichino, A., De Crescenzo, F., Cipriani, A., Lennox, B., & Harrison, R. (2020b). Specialised early intervention teams for recent-onset psychosis. The Cochrane Database of Systematic Reviews, 11, CD013288. doi: 10.1002/14651858.CD013288.pub2Google ScholarPubMed
Puntis, S., Oke, J., & Lennox, B. (2018). Discharge pathways and relapse following treatment from early intervention in psychosis services. BJPsych Open, 4(5), 368374. doi: 10.1192/bjo.2018.50CrossRefGoogle ScholarPubMed
Puntis, S., Whiting, D., Pappa, S., & Lennox, B. (2021). Development and external validation of an admission risk prediction model after treatment from early intervention in psychosis services. Translational Psychiatry, 11(1), 35. doi: 10.1038/s41398-020-01172-yCrossRefGoogle ScholarPubMed
Reith, M. (1998). Community care tragedies: A practice guide to mental health inquiries. Birmingham: Venture Press.Google Scholar
Ritchie, J. H., Dick, D., & Lingham, R. (1994). The report of the inquiry into the care and treatment of Christopher Clunis. London: HMSO.Google Scholar
Roe, D., Mashiach-Eizenberg, M., Garber Epstein, P., Yamin, A., Hoter Ishay, G., & Zisman-Ilani, Y. (2021). Implementation of navigate for first episode psychosis in Israel: Clients’ characteristics, program utilization and ratings of change. Early Intervention in Psychiatry, 15(5), 13431348. doi: 10.1111/eip.13055CrossRefGoogle Scholar
Solmi, F., Mohammadi, A., Perez, J. A., Hameed, Y., Jones, P. B., & Kirkbride, J. B. (2018). Predictors of disengagement from early intervention in psychosis services. The British Journal of Psychiatry, 213(2), 477483. doi: 10.1192/bjp.2018.91CrossRefGoogle ScholarPubMed
Stefanis, N. (2022). Early intervention services for psychosis are coming to Greece! Retrieved from https://iepa.org.au/network-news/early-intervention-services-for-psychosis-are-coming-to-greece/Google Scholar
The President's Office Republic of Maldives. (2022). The President and First Lady attend public lecture by Professor Patrick McGorry on mental health. Retrieved from https://www.presidencymaldives.gov.mv/PhotoGallery/View/6644Google Scholar
Tibbo, P. (2022). Plenary session. Functional Recovery. Discussion. Paper presented at the Canadian Consortium for Early Intervention in Psychosis. Conference 2022. https://www.meetview.com/EPIconference2022/player/?player_id=7665Google Scholar
Tindall, R. M., Simmons, M. B., Allott, K., & Hamilton, B. E. (2018). Essential ingredients of engagement when working alongside people after their first episode of psychosis: A qualitative meta-synthesis. Early Intervention in Psychiatry, 12(5), 784795. doi: 10.1111/eip.12566CrossRefGoogle ScholarPubMed