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Empirical evidence about recovery and mental health

Empirical evidence about recovery and mental health Background: Two discourses exist in mental health research and practice. The first focuses on the limitations associated with disability arising from mental disorder. The second focuses on the possibilities for living well with mental health problems. Discussion: This article was prompted by a review to inform disability policy. We identify seven findings from this review: recovery is best judged by experts or using standardised assessment; few people with mental health problems recover; if a person no longer meets criteria for a mental illness, they are in remission; diagnosis is a robust basis for characterising groups and predicting need; treatment and other supports are important factors for improving outcome; the barriers to receiving effective treatment are availability, financing and client awareness; and the impact of mental illness, in particular schizophrenia, is entirely negative. We selectively review a wider range of evidence which challenge these findings, including the changing understanding of recovery, national mental health policies, systematic review methodology and undertainty, epidemiological evidence about recovery rates, reasoning biased due to assumptions about mental illness being an illness like any other, the contested nature of schizophrenia, the social construction of diagnoses, alternative explanations for psychosis experiences including the role of trauma, diagnostic over-shadowing, stigma, the technological paradigm, the treatment gap, social determinants of mental ill-health, the prevalence of voice-hearing in the general population, and the sometimes positive impact of psychosis experience in relation to perspective and purpose. Conclusion: We propose an alternative seven messages which are both empirically defensible and more helpful to mental health stakeholders: Recovery is best judged by the person living with the experience; Many people with mental health problems recover; If a person no longer meets criteria for a mental illness, they are not ill; Diagnosis is not a robust foundation; Treatment is one route among many to recovery; Some people choose not to use mental health services; and the impact of mental health problems is mixed. Keywords: Mental health, Recovery, Science, Evidence, Prognosis, Outcome Background Centre for Mental Health at the University of Melbourne How should entitlement to disability-related benefits and [1], to inform the policy. other social resources be established? Welfare systems tend The review examined “the current state of evidence to be structured on a categorical basis, e.g. Not disabled relating to the impact of psychosocial disability” (p. 1) in versus Disabled. For example, Australia's trial National the context of implementing the National Disability Disability Insurance Scheme requires ‘permanent or likely Insurance Scheme Act 2013 in Australia. It included a to be permanent impairment or disability’ as an eligibility review of international approaches to understanding the criteria. In 2014 a literature review was undertaken by the concepts of ‘permanent’ and ‘impairment’ in disability legislation, the evidence relating to outcome for three specific diagnoses (schizophrenia, bipolar disorder and depression), and how people living with ‘psychosocial * Correspondence: mike.slade@kcl.ac.uk King’s College London, Health Service and Population Research Department disability’ can be supported. (Box P029), Institute of Psychiatry, Psychology & Neuroscience, Denmark Hill, Where does the review sit in terms of quality? Evidence London SE5 8AF, UK synthesis (i.e. a literature review) involves the integrating Full list of author information is available at the end of the article © 2015 Slade and Longden. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Slade and Longden BMC Psychiatry (2015) 15:285 Page 2 of 14 of available evidence to reach a justified conclusion. The mental illness also go unmet because they cannot most rigorous review methodology is called a systematic afford to access services to meet them or because they review, in which the aim is to synthesise all, or nearly all, do not know how to find out about existing services available evidence relating to a particular question. Other and how to access them. review methodologies also exist [2], and we would pos- 7. Research evidence shows that people with severe ition the 2014 review as a ‘systematized review’,i.e.one mental illness are most often affected to some degree which includes elements of a systematic review process in all areas of their daily living, experiencing while stopping short of being a full systematic review. difficulties in social and occupational functioning, As a minor point, the 2014 review has not to our know- maintaining a home and completing the tasks of ledge been published as an academic paper, and hence has daily living…Many people with a psychosocial not been peer reviewed. The peer review process might disability also experience homelessness…People with have highlighted some limitations, such as no rationale schizophrenia seem to be the most severely disabled. being given for the chosen date range (1994 to 2014; thus excluding some of the seminal long-term outcome studies We summarise these seven conclusions as seven [3–6] finding recovery rates for schizophrenia in excess of messages: 50 %), the use of only one electronic database (PsycInfo), the lack of clarity about how the search terms (which are 1. Recovery is best judged by experts or using given) were used, and the lack of clearly stated inclusion/ standardised assessments exclusion criteria. However, we mention these points only 2. Few people with mental health problems recover in passing, mindful that the authors have not positioned 3. If a person no longer meets criteria for a mental their review as systematic, nor claimed it has been peer illness, they are in remission reviewed. Overall, we view the 2014 review as a robust 4. Diagnosis is a robust basis for characterising groups and good-quality review, which is well written and trans- and predicting need parent in its methods, competent within the frame of ref- 5. Treatment and other supports are important factors erence used, and does not go beyond the data. It therefore for improving outcome helpfully illustrates the knowledge contribution of one 6. The barriers to receiving effective treatment are form of science. availability, financing and client awareness What did the review conclude? Some conclusions 7. The impact of mental illness, in particular (pp.73–75, all quotes verbatim) were: schizophrenia, is entirely negative. 1. The judgement of the disability and its likely To re-iterate, the review was well written and transpar- persistence tends to be made using a standard ent in its methods – it represents one form of science. battery of tests…and/or the opinions of appropriate However, we believe that its findings are influenced by experts. embedded assumptions, and there are other types of evi- 2. The negative effects of mental illness are, for a large dence which lead to alternative conclusions. Although the proportion of people, ongoing and pervasive. review aim related to psychosocial disability, its conclu- 3. Mental illness is most often not ‘permanent’ in the sions involve concepts which are becoming debated under sense that its effects are not consistent over time, the topic of ‘recovery’. The aim of this article is to provide though the pattern of impairment and functioning a balancing perspective on what a wider appraisal of evi- can persist for many years dence tells us about recovery in the context of mental 4. The best predictors of the long-term course of a ill-health. Our selective appraisal of a broader range of particular form of mental illness are likely to be the scientific evidence with different assumptions leads to a diagnosis itself, with people with schizophrenia different seven messages. tending to experience worse outcomes than people with other disorders, and characteristics of the illness Discussion occurring in the early stages. A note on language 5. The outcomes are likely to be mitigated by many In this article we seek to highlight some contested as- other factors such as access to quality treatment and sumptions. Often these assumptions are contained within supports. language, for example when we talk about ‘cause’, ‘remis- 6. Many people with a psychosocial disability, however, sion’, ‘illness’, ‘patient’ etc. also report having unmet support needs. Their needs Language can be unhelpful in hiding these assump- might be unmet because no suitable services exist or tions, and this article is specifically seeking to make because the services they are using do not fully meet relevant assumptions visible – hence we try as far as their needs. Alternatively, the needs of people with possible to use neutral language. We specifically use Slade and Longden BMC Psychiatry (2015) 15:285 Page 3 of 14 ‘person-first’ language, which avoids terms such as A different understanding of recovery has emerged from ‘schizophrenic’ as descriptions of individuals. the mental health service user and survivor movement. Language can also of course be unhelpful if it is too con- This second meaning can be called ‘personal recovery’.In voluted, such as ‘person having experiences which a mental contrast to clinical recovery, personal recovery: health professional would diagnose as a mental illness’.We therefore use recognised and somewhat but not totally 1. Is a process or a continuum neutral terms (e.g. mental health problems) whilst acknow- 2. Is subjectively defined by the person themselves ledging that they remain contested (e.g. some frame their 3. Is ‘rated’ by the person experiencing the mental experiences in trauma or spiritual terms). health difficulties, who is considered the expert on their recovery. Seven evidence-based alternative messages 4. Recovery means different things to different people, We now make the scientific case for seven different mes- although there are aspects that many people share. sages. Our knowledge, and therefore the majority of the evidence we cite, relates primarily to schizophrenia. The Personal recovery has a different focus from clinical issues overlap with the other two diagnoses – bipolar recovery, for example in emphasising the centrality of disorder and depression – covered in the 2014 review. hope, identity, meaning, and personal responsibility [9]. The most widely-cited definition, which underpins most Message 1: Recovery is best judged by the person living recovery policy internationally, is by Bill Anthony: with the experience The meaning of recovery in the context of mental health Recovery is a deeply personal, unique process of problems is changing. The old meaning – which we term changing one’s attitudes, values, feelings, goals, skills, ‘clinical recovery’– has emerged from professional-led and/or roles. It is a way of living a satisfying, hopeful, research and practice. It has four key features: and contributing life even within the limitations caused by illness. Recovery involves the development of 1. Recovery is an outcome or a state, generally new meaning and purpose in one’s life as one grows dichotomous – a person is either ‘in recovery’ or beyond the catastrophic effects of mental illness [10] ‘not in recovery’ (p.527) 2. It is observable – in clinical language, it is objective, not subjective Since recovery has a personal meaning for each indi- 3. It is rated by the expert clinician, not the patient vidual, it can be difficult to find a shared definition. In a 4. The definition of recovery does not vary between Delphi study with 381 participants, all of whom had per- individuals sonal experience of psychosis, the highest number of participants agreed on the statements ‘recovery is the Various definitions of clinical recovery have been pro- achievement of a personally acceptable quality of life’ posed by mental health professionals. A widely-used and ‘recovery is feeling better about yourself ’ [11]. definition is that recovery comprises full symptom Another more succinct definition is ‘Recovery involves remission, full or part-time work or education, inde- living as well as possible’ [12]. This has the merit of fo- pendent living without supervision by informal carers, cussing attention on what we have in common rather and having friends with whom activities can be shared, than how we are different: everyone, including both staff all sustained for a period of two years [7]. Although not and service users, is trying to live as well as possible. It a term used in the definition, this could be summarised also reflects the reality that we all have challenges which as being ‘normal’. limit our lives, whether related to health problems, social The definition of clinical recovery does not vary across problems (e.g. poverty), interpersonal problems, spiritu- individuals, which means it can be defined, measured ality, sexuality and so forth. A focus on supporting and investigated in empirical studies. The 2014 review people to live a life beyond mental health problems has illustrates this approach. However, deep assumptions emerged internationally as a key component of the re- about normality are embedded in clinical recovery: covery approach. This distinction between different understandings of “This kind of definition begs several questions that recovery has been characterised in different ways: recov- need to be addressed to come up with an ery ‘from’ versus recovery ‘in’ [13]; scientific versus con- understanding of recovery as outcome: How many sumer models of recovery [14]; clinical recovery versus goals must be achieved to be considered recovered? For personal recovery [15] or versus social recovery [16]. that matter, how much life success is considered It is this second understanding of recovery – personal “normal”?” [8] (p.5) recovery – which is meant when policies or services refer Slade and Longden BMC Psychiatry (2015) 15:285 Page 4 of 14 to supporting recovery, using a ‘recovery approach’ or suspect that most people accessing a paper read no fur- being based on a ‘recovery model’. It is the meaning of ther than the abstract, and only a tiny portion read not recovery which is embedded in national mental health only the full paper but also the online data supplement.) policy and emerging in practice internationally, including We therefore manually calculated that 23 of the in- Australia [17], Canada [18], England and Wales [19], cluded 50 studies recruited people on admission to hos- Germany [20], Hong Kong [21], Israel [22], Italy [23], the pital, and 7 on discharge from hospital. A further 4 Netherlands [24], New Zealand [25], Northern Ireland studies recruited from out-patient settings and 12 re- [26] and the United States of America [27]. cruited from a combination of in-patient and out-patient The ultimate arbiter of recovery is therefore the person settings. This leaves a total of 4 (8 %) of studies which living with the experience. This is inconvenient from a recruited from the general population. The total popula- policy perspective, which has traditionally relied on the tion in these general population studies of 434 is 4.8 % judgment of experts to make resource allocation decisions. of the 8,994 total sample size. In other words, nearly all However, as stated by Robert McNamara, “the challenge is the included studies identified potential participants who to make the important measurable, not the measurable were already in contact with mental health services. important”. A new evidence base is needed, including new As we discuss later (see Message 6), many people live approaches to (for example) establishing benefits entitle- with psychosis-like experiences outside of mental health ment, which locates recovery as a subjective experience services. Their ability to self-manage without attracting rather than as an observable state. the attention of services indicates a lower level of sever- ity and a higher rate of recovery. This means that people Message 2: Many people with mental health problems with less severe difficulties are systematically less likely recover to be present in the samples included in the Jääskeläinen The 2014 review does not give a definitive statement review. In other words, the evidence base synthesised in about recovery rates for the three disorders considered. this systematic review indicates a degree of exposure However, the presentation of prevalence data for two of bias and exaggerates the typical level and length of the three disorders opens by summarising findings from disability associated with the diagnosis of schizophrenia. relevant recent systematic reviews: a 2013 systematic review by Jääskeläinen and colleagues of outcome in Problem 2: follow-up period schizophrenia [28] and a 2014 systematic review by The follow-up length of studies included in the Jääskeläinen Steinert and colleagues of outcome in depression [29]. review varied. Again, this is not commented on in the main Our particular interest is in psychosis experiences, so paper, but details are given in Online supplement Table 1. we now discuss the Jääskeläinen schizophrenia review. We therefore calculated that 11 studies had follow-up pe- We anticipate that equivalent concerns also relate to riods of 5 or fewer years, 10 more than 5 but less than measuring recovery rates in other diagnostic groups. 10 years, 10 more than 10 but less than 15 years, 10 more The Jääskeläinen review summarised the findings of 50 than 15 but less than 20 years, and 9 of 20 or more years. studies of outcome in schizophrenia. It is a well-conducted In other words, studies varied enormously in their follow- systematic review, following best practice in reporting [30] up periods. and published following peer-review in a reputable What account was taken of this pattern in the analysis? academic journal. The take-home message, to quote the Almost none: “In order to describe recovery in studies with conclusion in the abstract (since most readers do not read different durations of follow-up, we derived the annual beyond the abstract), was “Based on the best available recovery rate by dividing the proportion of those who met data, approximately, 1 in 7 individuals with schizophrenia the recovery criteria by the number of years of follow-up” met our criteria for recovery” (p.1296). In other words, the (p. 1299). So recovery is assumed to be linear, progressing substantial majority of people given a diagnosis of schizo- at a fixed rate per year. No justification is given for this phrenia do not recover. (un-stated) assumption, which is undermined by the This conclusion is flawed for three reasons: sampling review finding that duration of follow-up did not predict strategy, follow-up period and outcome assessment. recovery estimate. The conclusion this approach leads to is: “The median annual recovery rate was 1.4 % per Problem 1: sampling strategy annum (Inter-Quartile Range: 0.7 %–2.6 %). With this an- The Jääskeläinen review is based on 50 studies. What nual recovery percentage, over 10 years approximately settings were participants recruited from? The authors 14 % would be expected to recover” (p. 1301). laudably include this information in Online supplement Recovery is not linear. The available empirical evi- Table 1 of the paper, but do not calculate or comment dence indicates that recovery is heavily influenced by on this aspect in the main paper. (Online supplements context, both social (e.g. social [31] and professional give further data not included in a main paper. We [32] relationships), and psychological (e.g. locus of Slade and Longden BMC Psychiatry (2015) 15:285 Page 5 of 14 control [33], wellbeing [34]). Although there is evidence random effects modelling involves several untested as- that distinct stages of recovery can be differentiated [9], sumptions (e.g. that the recovery rates differ between these stages are not linear [35]. Overall, pooling studies studies but all follow a distribution, the distribution is nor- of very different duration into one aggregated analysis is mally assumed to be random, etc.), and more generally not justified. random effects models do not ‘take account of’ (i.e. deal with) heterogeneity [37]. The authors do attempt to ex- Problem 3: outcome evaluation plore sources of heterogeneity in other analyses, but noth- How was recovery defined in the Jääskeläinen review? The ing is found – indicating that high uncertainty remains.) authors “attempted to assess recovery as objectively as Our overall point is not statistical. Rather, the picture possible” (p.1298). Their approach required (1) clinical we have painted is that each key decision made in this remission, (2) broader social functioning outcome and (3) review leads to a more pessimistic finding. From the en- at most ‘mild’ symptoms, with persistence of good out- tire population of people meeting criteria for a diagnosis come for a minimum of 2 years. Different measures were of schizophrenia, the focus is on those with more severe used across the studies (summarised in Online supple- problems who are in contact with mental health services. ment Table 1), and included psychopathology and receipt Despite the rather obvious observation that recovery of treatment for clinical remission, and employment, inde- takes time, and often a long time at that, studies of pendent living and Global Assessment of Functioning markedly different follow-up periods were treated as score for social functioning. The authors acknowledge this equal. The threshold for being ‘recovered’ was deliber- definition is “more stringent than the most widely used ately high. Despite being scientifically unjustified, studies consensus measure of remission” (p. 1298), presumably so were pooled to produce a misleading global recovery as to ensure that participants really were recovered and proportion. not just in remission. The conclusion in the Jääskeläinen paper that “We found What recovery rates were found? They ranged across no evidence to suggest that we are “getting better” at getting the 50 included studies from 0 % to 58 %. Even to the our patients better” (p.1305) perhaps indicates that the casual observer, this might raise some concerns about review was conducted from the assumptions of a clinical simply pooling the data to produce a single overall esti- recovery perspective. The desire to produce a number – an mate of recovery rate. This problem of combining apples empirically justified answer to the reasonable question and oranges is known in the systematic review trade as ‘How many people recover?’– maybeunderstandable heterogeneity, defined as the extent to which there are from this perspective. But it is also toxic. The implicit genuine differences underlying the results of included assumption that ‘mental illness is an illness like any other’ studies. Dealing with heterogeneity is a standard chal- is consistent with a clinical recovery perspective, but has lenge in systematic reviews. Are the included studies negative consequences on community attitudes [38]; in- sufficiently similar to be pooled (or ‘meta-analysed’)to deed, the evidence that it is a counter-productive message produce an overall estimate of recovery rate? is so strong that it is no longer used in population-level Two approaches are used in review methodology to campaigns to reduce mental health-related stigma [39]. test for heterogeneity. Visual inspection involves ‘eyebal- From the perspective of personal recovery (the newer ling’ the data, and the huge variation in recovery rates in and now dominant international understanding of Figure 2 of the paper would not give most analysts much recovery), there is a large knowledge gap. There is only confidence that pooling is justified. The second ap- a small and inconclusive empirical evidence base about proach is statistical, using a test called the I statistic, the relationship between clinical recovery and personal which assesses the percentage of total variation across recovery [33, 34, 40, 41]. There has been no long-term studies due to heterogeneity. This number ranges from epidemiological research (i.e. over decades) to under- 0 % to 100 %, and the standard rule-of-thumb for this stand how the development of an identity as a person in statistic is that 0 % indicates no heterogeneity (i.e. pool- recovery unfolds over time. A 10-year follow-up study ing the data is fully justified), 25 % indicates low hetero- published since the Jääskeläinen review investigated geneity, 50 % indicates moderate heterogeneity, and mortality, clinical and social outcomes in 557 individ- 75 % indicates high heterogeneity (i.e. pooling the data is uals with first-episode psychosis, and emphasised the not justified) [36]. In the Jääskeläinen review, the I disparity between symptom-based clinical recovery and score was 99.8 %. Despite this, all the studies were still social recovery [42]. In this analysis, 213 (65 % of 326, pooled, to produce the take-home message that 14 % of missing data 61) were not experiencing psychotic symp- people with a diagnosis of schizophrenia recover. (We toms at follow-up and 140 (46 % of 303, missing data 84) should note that the authors are aware of the issue. had been symptom free for two years or more, leading the They use a particular analysis approach – random ef- authors to observe that “the research relating to outcomes fects modelling – to addressthisissue.However, in schizophrenia and other psychoses, conducted before the Slade and Longden BMC Psychiatry (2015) 15:285 Page 6 of 14 more recent long-term course and outcome studies, has always ill’ has toxic consequences in a mental health painted an overly pessimistic picture of the clinical course” context, and should be challenged. (p.384). However, the low rates of employment (22 %) and being in a relationship (32 %) indicated that social exclu- Message 4: Diagnosis is not a robust foundation sion can remain an issue even when clinical recovery has While the use of diagnostic terms such as ‘schizophrenia’ occurred. is valid from a clinical recovery perspective, it must also A number of long-term (20 or more year) follow-up be emphasised just how contested diagnostic labels are studiesshowmorethanhalfofpeoplegiven adiagnosis in mental health. of schizophrenia experience clinical recovery [43]. At The latest taxonomy is the Diagnostic and Statistical the individual level, more and more people are telling Manual of Mental Disorders Version 5 (DSM-5) [49]. their idiosyncratic stories of recovery, in books [44, 45], Criteria for schizophrenia are shown in Table 1. web-sites (e.g. https://www.youtube.com/playlist?list=- Despite being emphasised as central diagnostic features PLE60D451CF87F4324, http://www.scottishrecovery.- in all previous editions of the DSM, it should be noted that net/Stories-from-the-narrative-research-project) and in two ‘first-rank symptoms’ (bizarre delusions and voices person. Recovery is emerging as much more common commenting and/or conversing) have now been removed than previously understood [46]. from this list due to their low reliability. In this respect, Overall, it is not scientifically justified to make a quan- diagnostic criteria for schizophrenia to be included in titative statement about recovery rates. Those that have DSM-5 were greatly contested in the years running up to been made are definitely under-estimates, and quite pos- its publication. These issues were not resolved in the scien- sibly major under-estimates, of the true likelihood of tific community. In the week before DSM-5 was launched, recovery. Thomas Insel who heads the US National Institute for Mental Health (the primary funder of mental health Message 3: If a person no longer meets criteria for a mental illness, they are not ill Table 1 DSM-5 criteria for schizophrenia An embedded assumption in the 2014 review, as in much Criteria A to F must all be met of mental health practice, is that having once been diag- A. Two or more of the following, each present for a significant portion nosed, no longer being diagnosable indicates the person is of time during a 1-month period (or less if successfully treated). At least one of these must be (1), (2), or (3): ‘in remission’ rather than not ill. Whilst it may be true that 1. Delusions a person who has had a particular diagnosis (e.g. depres- 2. Hallucinations sion, schizophrenia) has a higher likelihood than the 3. Disorganised speech 4. Grossly disorganised or catatonic behaviour general public of being diagnosable again, the re-framing 5. Negative symptoms of ‘well’ in a dichotomous categorisation system as ‘in B. For a significant portion of the time since the onset of the remission’ is a reasoning bias. ‘Well’ means well! disturbance, level of functioning in one or more major areas, such as work, interpersonal relations, or self-care, is markedly below the level achieved This reasoning bias reflects assumptions of chronicity prior to the onset (or when the onset is in childhood or adolescence, there and deterioration. For example, in discussing studies of is failure to achieve expected level of interpersonal, academic or people who experience a single episode with no recur- occupational functioning). C. Continuous signs of the disturbance persist for at least 6 months. This rence, the 2014 review cautions “…However, the latter 6-month period must include at least 1 month of symptoms (or less if percentage comes from a three-year study, which may be successfully treated) that meets Criterion A (i.e. active-phase symptoms) too short to accurately detect recurrent episodes” (p.12). and may include periods of prodromal or residual symptoms. During these prodromal or residual periods, the signs of the disturbance may be In other words, studies are criticised for being too short manifested by only negative symptoms or by two or more symptoms to detect relapse, but the possibility of being too short to listed in Criterion A present in an attenuated form (e.g. odd beliefs, detect recovery is not considered. unusual perceptual experiences). D. Schizoaffective disorder and depressive or bipolar disorder with The concept of remission is of course a common health psychotic features have been ruled out because either a) no depressive term. It can be helpful, for example in health contexts or manic episodes have occurred concurrently with the active-phase where long-term surveillance of patients with recurring ill- symptoms, or 2) if mood episodes have occurred during active-phase symptoms, they have been present for a minority of the total duration nesses is a reasonable use of resources. However, the use of the active and residual periods of the illness. of this approach in a mental health context is problematic. E. The disturbance is not attributable to the physiological effects of a One form of stigma is called diagnostic over-shadowing, a substance (e.g. a drug of abuse, a medication) or another medical condition. process by which physical symptoms are misattributed to F. If there is a history of autism spectrum disorder or a communication mental illness [47]. This is one factor underpinning the disorder of childhood onset, the additional diagnosis of schizophrenia is scandalous 20-year mortality gap for men and 15-year gap made only if prominent delusions or hallucinations, in addition to the other required symptoms of schizophrenia, are also present for at least for women between people living with and without mental a month (or less if successfully treated). illness in high income countries [48]. The view of ‘once ill, Slade and Longden BMC Psychiatry (2015) 15:285 Page 7 of 14 research in North America) announced that the NIMH not a scientific one. In fact, the more “it” is studied, was going to abandon DSM because it dealt only with the more everyone becomes convinced that “it” really is symptoms and not the genetic and neurological research “something”. (p.62) [52] which he believed ought to be used to define disease entities. Causes of ‘mental illness’ are contested. Research disci- A recent report called ‘Understanding Psychosis’ from plines across different modalities (e.g. genetic, biological, the British Psychological Society [50] concluded: psychological, social) commonly exhibit this bias – what- ever is found to be influenced by the modality of interest is …reliability remains low for most diagnoses, at least in ‘confirmed,’ and whatever is not found to be influenced is everyday clinical practice where diagnoses are often ‘unexplained’. This is as a result of the scientific method, made without detailed reference to the official which tends to find positive evidence initially even where manuals. Clinicians tend to have diagnostic more robust future investigation finds the apparent rela- ‘preferences’ and people are often given a range of tionship to be spurious. Witness the repeated discovery of diagnoses during their contact with mental health ‘the gene for X’ which proves not to be substantiated. For services. Research confirms that usage varies between example, behavioural genetics aims to establish causal rela- different doctors, hospitals and countries. Even tionships between genes and behaviour [53]. The approach experienced clinicians, who have been given extra involves identifying genetic influences (e.g. through twin training in applying the criteria, only agree on a broad studies), and unexplained variance can then be investigated diagnostic category about 50 % of the time. (p.22) through studies of shared environment (e.g. through family studies) and non-shared environment (e.g. through adop- Other credible commentators have gone further, and tion studies). This elevates the importance of evidence for argued for the abolition of the term ‘schizophrenia’ genetic influences. The same criticism of course applies to altogether [51]. Some of the issues are outlined at the search for psychological or social causes of mental http://www.schizophreniainquiry.org. illness. In the words of Abram Maslow, “I suppose it is Why is there such lack of clarity about diagnosis? One tempting, if the only tool you have is a hammer, to treat explanation is that diagnostic categories in mental everything as if it is a nail” [54]. health encompass an ever-increasing range of human A specific contested point in relation to psychosis experiences – the so-called ‘colonisation of the human experiences is the role of trauma. Scientific evidence is condition’ [15]. Maddux has characterised the process: making clear that adverse life events (particularly, but not exclusively, childhood abuse) are experienced by a The social construction of psychopathology works substantial number of people who go on to develop something like this. Someone observes a pattern of psychosis (and hence be diagnosed with ‘schizophrenia’ behaving, thinking, feeling, or desiring that deviates or ‘bipolar disorder’ or other psychosis diagnoses). This from some social norm or ideal or identifies a human was summarised in 2014 [50]: weakness or imperfection that, as expected, is displayed with greater frequency or severity by some Much evidence has now accumulated to suggest that people than others. A group with influence and power like other mental health problems, psychosis can be a decides that control, prevention, or “treatment” of this reaction to such stressful events and life circumstances, problem is desirable or profitable. The pattern is then particularly abuse or other forms of trauma [55, 56]. given a scientific-sounding name, preferably of Greek For example, voices may relate to previous trauma or Latin origin. The new scientific name is capitalised. which has left difficult feelings and memories that Eventually, the new term may be reduced to an acro- need to be explored and resolved. A review in 2008 nym, such as OCD (Obsessive-Compulsive Disorder), found that between half and three-quarters of psychiatric ADHD (Attention-Deficit/Hyperactivity Disorder), and inpatients had been either physically or sexually abused BDD (Body Dysmorphic Disorder). The new disorder as children [57]. Experiencing multiple childhood then takes on an existence of its own and becomes a traumas appears to give approximately the same risk disease-like entity. As news about “it” spreads, people of developing psychosis as smoking does for developing begin thinking they have “it”; medical and mental lung cancer [58]. (p. 42) health professionals begin diagnosing and treating “it”; and clinicians and clients begin demanding that A second reason is that the mental health system is health insurance policies cover the “treatment” of “it”. underpinned by assumptions which give primacy to the Once the “disorder” has been socially constructed and genetic and biological and more recently to the psycho- defined, the methods of science can be employed to logical, to the neglect of social understandings of mental study it, but the construction itself is a social process, distress. It has proved difficult for the mental health Slade and Longden BMC Psychiatry (2015) 15:285 Page 8 of 14 system, including research approaches, to let go of the Over-emphasising diagnosis also increases mental assumption that mental illness resides in the person. health-related stigma [67]. Presenting an understanding For example, one response to the above finding that as ‘how it really is’ reinforces the idea of a meaningful schizophrenia is more common in people who experi- gap between two groups (the ‘mad’ and the ‘sane’). The enced childhood abuse has been to search for the gen- reality is that we are all damaged in some way. etic variant which influences response to childhood The unquestioning use of mental illness diagnoses as if adversity [59]. Although all scientific research has po- they are un-contested and capture meaningful and invari- tential value, the continued effort to individualise ant individual-level diseases is difficult to justify, and may socially-caused phenomena – sometimes called ‘respon- have harmful consequences. It is reasonable for societies sibilization’ [60] – represents a reasoning bias in mental to seek defensible and transparent approaches to resource health research. Other social determinants of mental ill- allocation (e.g. welfare benefit entitlement), but the use of health include poverty, unemployment and reduced so- diagnosis is a problematic foundation. cial networks [61]. When these social causes become framed as ‘vulnerability’ factors, i.e. something about the Message 5: Treatment is one route among many to individual, then the real issues of justice, exclusion, power recovery and marginalisation are occluded. We believe that this A clinical recovery world-view is based on what might be could come to be considered to be as unacceptable as for described as a surgical metaphor. A person is healthy, then example a search for vulnerability to racism in people becomes ill (typically evidenced by a disturbance which is from ethnic minorities. If the problem is social, then social not self-corrected in balance –‘homeostasis’– in a physical solutions should be the first recourse. To put it in the lan- system of the body). Clinical intervention (e.g. surgery, guage of human rights, ‘Fix society, not people’. pharmacotherapy) restores the balance, homeostasis is re- An over-emphasis on diagnosis has adverse conse- stored, and health returns. From this perspective, treatment quences. It leads to the development of a separate sub- is instrumental to improve outcome. Such frameworks culture in which specialised rather than mainstream have been deemed ‘a technological paradigm’ in that (1) solutions are developed for people with mental health mental health difficulties are believed to arise from problems who have everyday problems [62]. For example, disordered processes within the individual, (2) are modelled the person with mental health difficulties who wants a universally and causally, independent of an individual’spar- relationship is offered social skills training, or who wants a ticular context, and (3) resulting interventions are applied job is offered pre-vocational training, or who wants to rent and evaluated independently of social/interpersonal values, an apartment is offered training to be a good tenant. Con- narratives, and relationships [68]. Such frameworks have trast these responses with how such requests would be been strongly criticised on the grounds that they are poorly responded to in non-clinical social situations. equipped for engaging with emotional suffering [69, 70]. An orientation towards recovery means starting with Furthermore, as discussed below and previously, empirical an assumption that people with mental illness are first evidence from within the paradigm does not support the and foremost people [63], so a more useful instinctive assumptions upon which it is based. response to meeting everyday problems is to support ac- By contrast, a personal recovery perspective does not cess to mainstream solutions. For example, the evidence assume treatment is needed for recovery. The emerging that Individual Placement and Support – an approach to empirical evidence indicates that individuals experien- supporting people to obtain and maintain a mainstream cing psychosis develop an identity as a person in recov- job – has superior outcomes to pre-vocational training ery through a range of routes. A systematic review of 97 (in which a person is trained to be ready for a job) is studies investigating the experience of recovery identi- overwhelming [64]. A Cochrane review synthesized 18 fied that one characteristic of the recovery journey is randomised controlled trials of reasonable quality, and that recovery can occur without professional interven- showed 18-month employment rates of 34 % for IPS tion [35]. A study of the experiences of 381 people living compared with 12 % for pre-vocational training [65]. For with psychosis found that 82 % agreed with the state- instance, a six-country European randomised controlled ment that ‘Recovery is knowing that you can help your- trial showed that individual placement and support was self become better’. superior to the local alternative in each site, in terms of These data are not an argument for reduced provision helping people find and maintain paid employment [66]. of mental health services. Mental disorders account for The same evidence base is emerging in relation to hous- 13 % of global illness burden, and major depression ing, that obtaining a tenancy and providing support to alone is expected to be the largest burden contributor by retain it is more effective than pre-tenancy training or 2030 [71]. Mental disorders are predicted by 2030 to ac- first meeting eligibility requirements (e.g. demonstrated count for nearly a third of the projected US$47 trillion sobriety) [46]. incurred by all non-communicable health conditions Slade and Longden BMC Psychiatry (2015) 15:285 Page 9 of 14 [72]. However, the vast majority of countries allocate less psychiatric care (e.g. loudness, location, personification, than 2 % of their health budgets to mental health [73]. This underlying neural activity) [86], with hallucinations found creates a ‘treatment gap’ between the 2 % allocated and to be associated with delusions in the general population 13 % needed, which should be reduced not widened. A 58- in the same way that they are in psychosis [87]. In this country survey of this treatment gap demonstrated a global respect, a more consistent predictor of distress and clinical consensus that around 10 % of health spend should be need appears to be emotional responses to, and negative allocated. Scaling up of mental health services is needed, beliefs about, the voices one hears rather than objective especially in low and middle income countries [74]. presence alone [86], which, at least in some cases, may be Rather, these data support the argument for levelling up influenced by exposure to trauma and social adversity – focussing more resources on the wider contributors to [88–92]. Similarly, distressing persecutory ideation and recovery. More research is needed, but candidate targets delusional beliefs show a clear spectrum across the general are supporting families in their caring role [75], providing population [93–95], with paranoia associated with similar decent housing [76], engaging with employers to help edu- psychological factors (e.g. depression, anxiety, interper- cate them in the work-place adjustments needed by people sonal sensitivity, trauma exposure) in both clinical and experiencing mental health problems [77], developing op- non-clinical groups [96]. Taken together, there is plausible portunities for people with personal experience of mental evidence that psychosis is a dimensional phenomenon that illness and recovery to be involved in and lead at all levels lies on a continuum with normal human experience rather in the mental health system [78], political activism by than a categorical ‘present or absent’ event [97–99]. mental health professionals [79], the use of peer-support People living with experiences considered typical of initiatives [80], and applying societal campaigns such as psychosis may not be in contact with mental health Time to Change [81] to challenge stigma in the mental services for a range of reasons, including: health system [82] and wider society. The overarching aim is a re-orienting of the mental health system around the  they choose not to have contact with the mental goal of ensuring access for people experiencing mental health system health problems to the normal entitlements of citizenship  they are either not distressed by their experiences, [83]. In turn, there is also a strong rationale for dispensing or actively value them more resources towards primary prevention efforts, e.g.  they have a good support network addressing factors like domestic violence, peer bullying,  they choose not to disclose because they fear being and childhood abuse [56]. stigmatised if they are given a diagnosis of a mental Over-emphasising the importance of treatment as the illness sole route to recovery is both empirically un-justified and  they have a non-medical or non-psychological maintains many wider contextual hindrances to recovery. framework for their experiences (e.g. supernatural, Key processes involved in recovery are connectedness, spiritual, cultural, technological) and do not identify hope, a positive identity, meaning and empowerment [35]. with models used in mental health services These processes can and do occur outside of the mental health system. So the explanations provided in the 2014 review for not being in contact with mental health services (either not Message 6: Some people choose not to use mental health knowing about services, or experiencing financial or other services access barriers) is incomplete. Many people make choices Many people live with psychosis-like experiences without to live with ‘symptoms’ associated with psychosis outside requiring (or wanting) input from mental health services. of the mental health system. Research to understand the For example voice hearing (‘auditory hallucinations’), a influences on this choice, and resulting impact on people’s cardinal symptom of psychosis, may be often reported experiences, should be a priority. However, the implication amongst those in good psychological health and with no that all people should be in contact with mental health history of mental health service contact. Prevalence esti- services, and therefore that using mental health services mates vary according to the age range examined and the should be either a requirement or an indicator of benefits ways in which voice hearing is defined, but is estimated to entitlement, is not justified. reach a median of 13.2 % in the adult general population [84]. Considering that lifetime rates of psychosis are esti- Message 7: The impact of mental health problems is mated to range from 0.2 % (narrowly defined criteria) to mixed 0.7 % (broadly defined) [85], it is clear that many more The picture conveyed in the 2014 review is that the im- individuals hear voices than are diagnosed with psychosis. pact of mental illness is solely and inevitably negative. In turn, voice hearing can show numerous phenomeno- Without denying the pain and distress of many people logical similarities in people with and without a need for who live with mental health difficulties, this perspective Slade and Longden BMC Psychiatry (2015) 15:285 Page 10 of 14 is both unjustified and unduly pessimistic. On the contrary, subjectively meaningful experience which, with the right survivor testimony indicates that the process of surviving support, can be lived with peacefully and profitably. Cor- mental health challenges – including psychosis – can respondingly, the Movement emphasises the possibility of ultimately be transformative, enriching and a source of empowerment and psychological growth, as well as personal and social growth [44, 100–102]. For example: exploring the interpersonal and socio-political implica- tions of the identity of ‘voice hearer’ [44, 111–113]. Al- Recovery to me is not only coming to terms with what though the Movement emphasises partnership and has happened in my life…but having grown as an alliance between ‘experts by profession’ (clinicians, aca- individual because of my experiences…I can now look demics) and ‘experts by experience’ (service-users, their back in time and know that everything that happened friends and family), many of its prominent members are helped me to become the person I am today. [103] former psychiatric patients who testify to how their (p.46) distressing experiences have ultimately informed and augmented their wellbeing (e.g. through a heightened capacity for political engagement, creativity, compassion, fortitude, and self-knowledge) [44, 100, 102, 114]. Yes I am MAD! I am not in remission I am not on In turn, the concept of the ‘survivor mission’ captures a trajectory I am not a syndrome I am not how one may transform and transcend one’s experiences delusional. I am living my life. I am living the of adversity in a positive way [115]. For example, mental dream. [104] (p.178) health workers with their own history of emotional distress may often exhibit greater professional engagement than colleagues without such experiences [116], and the value of employing peer-support workers within services is likewise I’m now inspired to speak about the possibilities of well-recognised [117]. Similarly, adversities that are closely recovery, to spread a message of hope, to break down associated with complex mental health difficulties, such as barriers/stigmas… I now believe anything is possible. childhood abuse [118] and violent victimisation [119], can [105] (p.246–247) in themselves be a means of ‘posttraumatic growth’ in the sense of inducing positive psychological, social, and inter- personal changes. Taken together such findings attest to For most of my life I have studied the phenomena the fact that while mental health problems may be devas- known as madness, my own and others…Forging tating and life-changing, they can also lead to a heightened friendships with my peers, I found community in our sense of perspective and purpose. shared experience and our passion for helping fellow travellers. We helped ourselves find meaning when we Summary helped others. [106] (p.272) This article has identified seven scientifically defensible, relevant and helpful messages about recovery. These messages are intended to be applicable to individuals affected by mental health problems, their family and So why would I want anything to do with this illness? other informal supporters, and mental health workers. Because I honestly believe that as a result of it I have felt more things, more deeply; had more experiences, Message 1: Recovery is best judged by the person living more intensely; loved more, and been more loved; with the experience laughed more often for having cried more; appreciated The most important judge of recovery is the person more the springs for all the winters;… and slowly directly affected. Therefore the individual’s values and learned the values of caring, loyalty, and seeing things preferences for specific treatments or other forms of through. [107] (p.218) support should be central. As noted by Repper, recovery involves the realisation Message 2: Many people with mental health problems that there are aspects of mental health challenges that can recover provide growth and positive gain [108]. A particular locus Living well with and beyond ‘illness’ experiences is possible for this perspective comes from the International Hearing for many people. It involves personal effort and support Voices Movement, a prominent psychiatric survivor or- from others. In relation to benefits entitlement, the criter- ganisation that works to reframe conventional disease ion of ‘permanent disability’ in a mental health context is models of voice hearing [109, 110]. A central tenet of the toxic, and should not be used. If a time criterion is needed Hearing Voices Movement is that voice hearing is a then a duration relating to a reasonable review period Slade and Longden BMC Psychiatry (2015) 15:285 Page 11 of 14 should be used, such as ‘expected to persist for at least one evidence disconfirming the discourse [120]. We believe year’. that the dominant discourse within mental health is one of limitations, in which clinical and research skills are Message 3: If a person no longer meets criteria for a more oriented towards identifying for example disabil- mental illness, they are not ill ities than strengths, risk factors than protective factors, The more a person can develop a rich and layered iden- vulnerability than resilience, and threats than opportun- tity as a person in recovery, rather than a thin identity as ities. Such a discourse is more likely to produce pessim- a ‘patient’, the more they will develop resilience and the istic results. As our goal in this selective review was to ability to meet the challenges of life. provide a balancing rather than balanced perspective, we therefore included more quotes and links to narrative Message 4: Diagnosis is not a robust foundation web-sites than typical in scientific papers. Our aim was to Diagnosis is helpful to some but not all people. There- increase the visibility of evidence from the subjective fore it should be used if helpful, but having a different experience of individuals. Future reviews should use meth- understanding of experiences (e.g. as a response to odologies such as narrative synthesis [121] to integrate the trauma rather than as an illness) is scientifically justified full range of nomothetic evidence from studies of groups and for some people can be a turning point on their and idiographic evidence from studies of individual [122], road to recovery. Diagnosis is a convenient criterion in with the aim of providing a balanced and helpful appraisal relation to benefits entitlement, but is contested. Some of the empirical evidence about recovery. people choose not to accept their diagnosis, and framing Abbreviations their experience in other ways has a positive influence DSM: Diagnostic and Statistical Manual of Mental Disorders; IPS: Individual on their recovery. Making people accept a label in order Placement and Support. to access entitlements therefore has negative conse- Competing interests quences. New approaches to allocating social resources The authors declare that they have no competing interests. are needed, which reduce rather than enhance stigma. In the short term, one step towards reducing benefits- Authors’ contributions MS and EL made substantial contributions to conception and design, were related stigma would be to allow disagreement with a involved in drafting the manuscript, gave final approval of the version to be diagnosis to be recorded on claim forms without impact- published, and agree to be accountable for all aspects of the work. ing on entitlement. In the longer term, less contested ap- proaches than diagnosis are needed. Authors’ information MS is a clinical academic. He leads a research team at King’sCollege London focussing on empirical research into recovery and wellbeing Message 5: Treatment is one route among many to (see researchintorecovery.com), and is a practising clinical psychologist in a recovery communityforensicmentalhealthteam. He thus worksinboththe scientific world which values particular types of knowledge and the clinical It is reasonable to expect a full range of established world which involves individuals struggling to find a way forward in their pharmacological, psychological and social interventions life, and creating complex ethical and practice dilemmas for professionals. to be widely available and competently provided in high He is influenced by his professional identity as a clinical psychologist, which socialises into a multiple-model view of the world, and he has concerns income countries. However, some people find other ways about invariant solutions to complex human problems. He has also been forward in their life – there is more than one road to influenced by people with lived experience of mental health problems and recovery. recovery, who have taught him that there are many routes to recovery. He therefore believes that scientific enquiry should be methodologically rigorous, and generalisation should be thoughtful and cautious. Message 6: Some people choose not to use mental health EL is a postdoctoral researcher at the University of Liverpool and has previously services worked clinically in an Early Intervention in Psychosis service. She contributes to such consumer-led initiatives as the International Hearing Voices Movement People choose not to use mental health services for a (www.intervoiceonline.org) and Soteria Network (www.soterianetwork.org.uk) range of reasons. Of these, some would benefit from and additionally has lived experience of trauma, dissociation and psychosis. As them, and others live well outside of services. such she views her work as informed by a fusion of ‘expertise by profession’ and ‘expertise by experience’. Her combination of perspectives have led her to emphasise the role of life events, particularly those that are adversarial and Message 7: The impact of mental health problems is emotionally overwhelming, in influencing the course and content of mental mixed distress. However, she also advocates the importance of deferring to individual wisdom, insights and preferences for optimal mental health care; both for Recovery may not mean getting one’s previous life back – treatment needs and how a client conceptualises their experiences none of us can go backwards – but many people identify (e.g. psychological, medical, spiritual and/or cultural). She is additionally that the experience of mental ill-health has unexpected concerned with issues of social justice, and the influence of oppressive and inequitable systems in perpetuating mental ill health. benefits. All discourses, including scientific ones, are vulnerable Acknowledgements to confirmation bias, in which evidence supporting the This article is based on a report commissioned and funded by MI Fellowship discourse is more likely to be noticed and accepted than [123]. The funders had no role in the collection, analysis, and interpretation Slade and Longden BMC Psychiatry (2015) 15:285 Page 12 of 14 of data, in the writing of the manuscript, or in the decision to submit the 25. Mental Health Commission. Blueprint II: How things need to be. Wellington: manuscript for publication. Mental Health Commission; 2012. 26. Department of Health Social Services and Public Safety (Northern Ireland). Author details Service Framework for Mental Health and Wellbeing. 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Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, et al. Guidance on the conduct of narrative synthesis in systematic reviews. Results of an ESRC funded research project. Lancaster: University of Lancaster; 2006. 122. Rudnick A. Recovery of People with Mental Illness, Philosophical and Related Perspectives. Oxford: Oxford University Press; 2012. 123. Slade M, Longden E. The empirical evidence about mental health and recovery: how likely, how long, what helps? Melbourne: MI Fellowship; Submit your next manuscript to BioMed Central and take full advantage of: • Convenient online submission • Thorough peer review • No space constraints or color figure charges • Immediate publication on acceptance • Inclusion in PubMed, CAS, Scopus and Google Scholar • Research which is freely available for redistribution Submit your manuscript at www.biomedcentral.com/submit http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Psychiatry Springer Journals

Empirical evidence about recovery and mental health

BMC Psychiatry , Volume 15 (1) – Nov 14, 2015

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Springer Journals
Copyright
Copyright © 2015 by Slade and Longden.
Subject
Medicine & Public Health; Psychiatry; Psychotherapy
eISSN
1471-244X
DOI
10.1186/s12888-015-0678-4
pmid
26573691
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See Article on Publisher Site

Abstract

Background: Two discourses exist in mental health research and practice. The first focuses on the limitations associated with disability arising from mental disorder. The second focuses on the possibilities for living well with mental health problems. Discussion: This article was prompted by a review to inform disability policy. We identify seven findings from this review: recovery is best judged by experts or using standardised assessment; few people with mental health problems recover; if a person no longer meets criteria for a mental illness, they are in remission; diagnosis is a robust basis for characterising groups and predicting need; treatment and other supports are important factors for improving outcome; the barriers to receiving effective treatment are availability, financing and client awareness; and the impact of mental illness, in particular schizophrenia, is entirely negative. We selectively review a wider range of evidence which challenge these findings, including the changing understanding of recovery, national mental health policies, systematic review methodology and undertainty, epidemiological evidence about recovery rates, reasoning biased due to assumptions about mental illness being an illness like any other, the contested nature of schizophrenia, the social construction of diagnoses, alternative explanations for psychosis experiences including the role of trauma, diagnostic over-shadowing, stigma, the technological paradigm, the treatment gap, social determinants of mental ill-health, the prevalence of voice-hearing in the general population, and the sometimes positive impact of psychosis experience in relation to perspective and purpose. Conclusion: We propose an alternative seven messages which are both empirically defensible and more helpful to mental health stakeholders: Recovery is best judged by the person living with the experience; Many people with mental health problems recover; If a person no longer meets criteria for a mental illness, they are not ill; Diagnosis is not a robust foundation; Treatment is one route among many to recovery; Some people choose not to use mental health services; and the impact of mental health problems is mixed. Keywords: Mental health, Recovery, Science, Evidence, Prognosis, Outcome Background Centre for Mental Health at the University of Melbourne How should entitlement to disability-related benefits and [1], to inform the policy. other social resources be established? Welfare systems tend The review examined “the current state of evidence to be structured on a categorical basis, e.g. Not disabled relating to the impact of psychosocial disability” (p. 1) in versus Disabled. For example, Australia's trial National the context of implementing the National Disability Disability Insurance Scheme requires ‘permanent or likely Insurance Scheme Act 2013 in Australia. It included a to be permanent impairment or disability’ as an eligibility review of international approaches to understanding the criteria. In 2014 a literature review was undertaken by the concepts of ‘permanent’ and ‘impairment’ in disability legislation, the evidence relating to outcome for three specific diagnoses (schizophrenia, bipolar disorder and depression), and how people living with ‘psychosocial * Correspondence: mike.slade@kcl.ac.uk King’s College London, Health Service and Population Research Department disability’ can be supported. (Box P029), Institute of Psychiatry, Psychology & Neuroscience, Denmark Hill, Where does the review sit in terms of quality? Evidence London SE5 8AF, UK synthesis (i.e. a literature review) involves the integrating Full list of author information is available at the end of the article © 2015 Slade and Longden. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Slade and Longden BMC Psychiatry (2015) 15:285 Page 2 of 14 of available evidence to reach a justified conclusion. The mental illness also go unmet because they cannot most rigorous review methodology is called a systematic afford to access services to meet them or because they review, in which the aim is to synthesise all, or nearly all, do not know how to find out about existing services available evidence relating to a particular question. Other and how to access them. review methodologies also exist [2], and we would pos- 7. Research evidence shows that people with severe ition the 2014 review as a ‘systematized review’,i.e.one mental illness are most often affected to some degree which includes elements of a systematic review process in all areas of their daily living, experiencing while stopping short of being a full systematic review. difficulties in social and occupational functioning, As a minor point, the 2014 review has not to our know- maintaining a home and completing the tasks of ledge been published as an academic paper, and hence has daily living…Many people with a psychosocial not been peer reviewed. The peer review process might disability also experience homelessness…People with have highlighted some limitations, such as no rationale schizophrenia seem to be the most severely disabled. being given for the chosen date range (1994 to 2014; thus excluding some of the seminal long-term outcome studies We summarise these seven conclusions as seven [3–6] finding recovery rates for schizophrenia in excess of messages: 50 %), the use of only one electronic database (PsycInfo), the lack of clarity about how the search terms (which are 1. Recovery is best judged by experts or using given) were used, and the lack of clearly stated inclusion/ standardised assessments exclusion criteria. However, we mention these points only 2. Few people with mental health problems recover in passing, mindful that the authors have not positioned 3. If a person no longer meets criteria for a mental their review as systematic, nor claimed it has been peer illness, they are in remission reviewed. Overall, we view the 2014 review as a robust 4. Diagnosis is a robust basis for characterising groups and good-quality review, which is well written and trans- and predicting need parent in its methods, competent within the frame of ref- 5. Treatment and other supports are important factors erence used, and does not go beyond the data. It therefore for improving outcome helpfully illustrates the knowledge contribution of one 6. The barriers to receiving effective treatment are form of science. availability, financing and client awareness What did the review conclude? Some conclusions 7. The impact of mental illness, in particular (pp.73–75, all quotes verbatim) were: schizophrenia, is entirely negative. 1. The judgement of the disability and its likely To re-iterate, the review was well written and transpar- persistence tends to be made using a standard ent in its methods – it represents one form of science. battery of tests…and/or the opinions of appropriate However, we believe that its findings are influenced by experts. embedded assumptions, and there are other types of evi- 2. The negative effects of mental illness are, for a large dence which lead to alternative conclusions. Although the proportion of people, ongoing and pervasive. review aim related to psychosocial disability, its conclu- 3. Mental illness is most often not ‘permanent’ in the sions involve concepts which are becoming debated under sense that its effects are not consistent over time, the topic of ‘recovery’. The aim of this article is to provide though the pattern of impairment and functioning a balancing perspective on what a wider appraisal of evi- can persist for many years dence tells us about recovery in the context of mental 4. The best predictors of the long-term course of a ill-health. Our selective appraisal of a broader range of particular form of mental illness are likely to be the scientific evidence with different assumptions leads to a diagnosis itself, with people with schizophrenia different seven messages. tending to experience worse outcomes than people with other disorders, and characteristics of the illness Discussion occurring in the early stages. A note on language 5. The outcomes are likely to be mitigated by many In this article we seek to highlight some contested as- other factors such as access to quality treatment and sumptions. Often these assumptions are contained within supports. language, for example when we talk about ‘cause’, ‘remis- 6. Many people with a psychosocial disability, however, sion’, ‘illness’, ‘patient’ etc. also report having unmet support needs. Their needs Language can be unhelpful in hiding these assump- might be unmet because no suitable services exist or tions, and this article is specifically seeking to make because the services they are using do not fully meet relevant assumptions visible – hence we try as far as their needs. Alternatively, the needs of people with possible to use neutral language. We specifically use Slade and Longden BMC Psychiatry (2015) 15:285 Page 3 of 14 ‘person-first’ language, which avoids terms such as A different understanding of recovery has emerged from ‘schizophrenic’ as descriptions of individuals. the mental health service user and survivor movement. Language can also of course be unhelpful if it is too con- This second meaning can be called ‘personal recovery’.In voluted, such as ‘person having experiences which a mental contrast to clinical recovery, personal recovery: health professional would diagnose as a mental illness’.We therefore use recognised and somewhat but not totally 1. Is a process or a continuum neutral terms (e.g. mental health problems) whilst acknow- 2. Is subjectively defined by the person themselves ledging that they remain contested (e.g. some frame their 3. Is ‘rated’ by the person experiencing the mental experiences in trauma or spiritual terms). health difficulties, who is considered the expert on their recovery. Seven evidence-based alternative messages 4. Recovery means different things to different people, We now make the scientific case for seven different mes- although there are aspects that many people share. sages. Our knowledge, and therefore the majority of the evidence we cite, relates primarily to schizophrenia. The Personal recovery has a different focus from clinical issues overlap with the other two diagnoses – bipolar recovery, for example in emphasising the centrality of disorder and depression – covered in the 2014 review. hope, identity, meaning, and personal responsibility [9]. The most widely-cited definition, which underpins most Message 1: Recovery is best judged by the person living recovery policy internationally, is by Bill Anthony: with the experience The meaning of recovery in the context of mental health Recovery is a deeply personal, unique process of problems is changing. The old meaning – which we term changing one’s attitudes, values, feelings, goals, skills, ‘clinical recovery’– has emerged from professional-led and/or roles. It is a way of living a satisfying, hopeful, research and practice. It has four key features: and contributing life even within the limitations caused by illness. Recovery involves the development of 1. Recovery is an outcome or a state, generally new meaning and purpose in one’s life as one grows dichotomous – a person is either ‘in recovery’ or beyond the catastrophic effects of mental illness [10] ‘not in recovery’ (p.527) 2. It is observable – in clinical language, it is objective, not subjective Since recovery has a personal meaning for each indi- 3. It is rated by the expert clinician, not the patient vidual, it can be difficult to find a shared definition. In a 4. The definition of recovery does not vary between Delphi study with 381 participants, all of whom had per- individuals sonal experience of psychosis, the highest number of participants agreed on the statements ‘recovery is the Various definitions of clinical recovery have been pro- achievement of a personally acceptable quality of life’ posed by mental health professionals. A widely-used and ‘recovery is feeling better about yourself ’ [11]. definition is that recovery comprises full symptom Another more succinct definition is ‘Recovery involves remission, full or part-time work or education, inde- living as well as possible’ [12]. This has the merit of fo- pendent living without supervision by informal carers, cussing attention on what we have in common rather and having friends with whom activities can be shared, than how we are different: everyone, including both staff all sustained for a period of two years [7]. Although not and service users, is trying to live as well as possible. It a term used in the definition, this could be summarised also reflects the reality that we all have challenges which as being ‘normal’. limit our lives, whether related to health problems, social The definition of clinical recovery does not vary across problems (e.g. poverty), interpersonal problems, spiritu- individuals, which means it can be defined, measured ality, sexuality and so forth. A focus on supporting and investigated in empirical studies. The 2014 review people to live a life beyond mental health problems has illustrates this approach. However, deep assumptions emerged internationally as a key component of the re- about normality are embedded in clinical recovery: covery approach. This distinction between different understandings of “This kind of definition begs several questions that recovery has been characterised in different ways: recov- need to be addressed to come up with an ery ‘from’ versus recovery ‘in’ [13]; scientific versus con- understanding of recovery as outcome: How many sumer models of recovery [14]; clinical recovery versus goals must be achieved to be considered recovered? For personal recovery [15] or versus social recovery [16]. that matter, how much life success is considered It is this second understanding of recovery – personal “normal”?” [8] (p.5) recovery – which is meant when policies or services refer Slade and Longden BMC Psychiatry (2015) 15:285 Page 4 of 14 to supporting recovery, using a ‘recovery approach’ or suspect that most people accessing a paper read no fur- being based on a ‘recovery model’. It is the meaning of ther than the abstract, and only a tiny portion read not recovery which is embedded in national mental health only the full paper but also the online data supplement.) policy and emerging in practice internationally, including We therefore manually calculated that 23 of the in- Australia [17], Canada [18], England and Wales [19], cluded 50 studies recruited people on admission to hos- Germany [20], Hong Kong [21], Israel [22], Italy [23], the pital, and 7 on discharge from hospital. A further 4 Netherlands [24], New Zealand [25], Northern Ireland studies recruited from out-patient settings and 12 re- [26] and the United States of America [27]. cruited from a combination of in-patient and out-patient The ultimate arbiter of recovery is therefore the person settings. This leaves a total of 4 (8 %) of studies which living with the experience. This is inconvenient from a recruited from the general population. The total popula- policy perspective, which has traditionally relied on the tion in these general population studies of 434 is 4.8 % judgment of experts to make resource allocation decisions. of the 8,994 total sample size. In other words, nearly all However, as stated by Robert McNamara, “the challenge is the included studies identified potential participants who to make the important measurable, not the measurable were already in contact with mental health services. important”. A new evidence base is needed, including new As we discuss later (see Message 6), many people live approaches to (for example) establishing benefits entitle- with psychosis-like experiences outside of mental health ment, which locates recovery as a subjective experience services. Their ability to self-manage without attracting rather than as an observable state. the attention of services indicates a lower level of sever- ity and a higher rate of recovery. This means that people Message 2: Many people with mental health problems with less severe difficulties are systematically less likely recover to be present in the samples included in the Jääskeläinen The 2014 review does not give a definitive statement review. In other words, the evidence base synthesised in about recovery rates for the three disorders considered. this systematic review indicates a degree of exposure However, the presentation of prevalence data for two of bias and exaggerates the typical level and length of the three disorders opens by summarising findings from disability associated with the diagnosis of schizophrenia. relevant recent systematic reviews: a 2013 systematic review by Jääskeläinen and colleagues of outcome in Problem 2: follow-up period schizophrenia [28] and a 2014 systematic review by The follow-up length of studies included in the Jääskeläinen Steinert and colleagues of outcome in depression [29]. review varied. Again, this is not commented on in the main Our particular interest is in psychosis experiences, so paper, but details are given in Online supplement Table 1. we now discuss the Jääskeläinen schizophrenia review. We therefore calculated that 11 studies had follow-up pe- We anticipate that equivalent concerns also relate to riods of 5 or fewer years, 10 more than 5 but less than measuring recovery rates in other diagnostic groups. 10 years, 10 more than 10 but less than 15 years, 10 more The Jääskeläinen review summarised the findings of 50 than 15 but less than 20 years, and 9 of 20 or more years. studies of outcome in schizophrenia. It is a well-conducted In other words, studies varied enormously in their follow- systematic review, following best practice in reporting [30] up periods. and published following peer-review in a reputable What account was taken of this pattern in the analysis? academic journal. The take-home message, to quote the Almost none: “In order to describe recovery in studies with conclusion in the abstract (since most readers do not read different durations of follow-up, we derived the annual beyond the abstract), was “Based on the best available recovery rate by dividing the proportion of those who met data, approximately, 1 in 7 individuals with schizophrenia the recovery criteria by the number of years of follow-up” met our criteria for recovery” (p.1296). In other words, the (p. 1299). So recovery is assumed to be linear, progressing substantial majority of people given a diagnosis of schizo- at a fixed rate per year. No justification is given for this phrenia do not recover. (un-stated) assumption, which is undermined by the This conclusion is flawed for three reasons: sampling review finding that duration of follow-up did not predict strategy, follow-up period and outcome assessment. recovery estimate. The conclusion this approach leads to is: “The median annual recovery rate was 1.4 % per Problem 1: sampling strategy annum (Inter-Quartile Range: 0.7 %–2.6 %). With this an- The Jääskeläinen review is based on 50 studies. What nual recovery percentage, over 10 years approximately settings were participants recruited from? The authors 14 % would be expected to recover” (p. 1301). laudably include this information in Online supplement Recovery is not linear. The available empirical evi- Table 1 of the paper, but do not calculate or comment dence indicates that recovery is heavily influenced by on this aspect in the main paper. (Online supplements context, both social (e.g. social [31] and professional give further data not included in a main paper. We [32] relationships), and psychological (e.g. locus of Slade and Longden BMC Psychiatry (2015) 15:285 Page 5 of 14 control [33], wellbeing [34]). Although there is evidence random effects modelling involves several untested as- that distinct stages of recovery can be differentiated [9], sumptions (e.g. that the recovery rates differ between these stages are not linear [35]. Overall, pooling studies studies but all follow a distribution, the distribution is nor- of very different duration into one aggregated analysis is mally assumed to be random, etc.), and more generally not justified. random effects models do not ‘take account of’ (i.e. deal with) heterogeneity [37]. The authors do attempt to ex- Problem 3: outcome evaluation plore sources of heterogeneity in other analyses, but noth- How was recovery defined in the Jääskeläinen review? The ing is found – indicating that high uncertainty remains.) authors “attempted to assess recovery as objectively as Our overall point is not statistical. Rather, the picture possible” (p.1298). Their approach required (1) clinical we have painted is that each key decision made in this remission, (2) broader social functioning outcome and (3) review leads to a more pessimistic finding. From the en- at most ‘mild’ symptoms, with persistence of good out- tire population of people meeting criteria for a diagnosis come for a minimum of 2 years. Different measures were of schizophrenia, the focus is on those with more severe used across the studies (summarised in Online supple- problems who are in contact with mental health services. ment Table 1), and included psychopathology and receipt Despite the rather obvious observation that recovery of treatment for clinical remission, and employment, inde- takes time, and often a long time at that, studies of pendent living and Global Assessment of Functioning markedly different follow-up periods were treated as score for social functioning. The authors acknowledge this equal. The threshold for being ‘recovered’ was deliber- definition is “more stringent than the most widely used ately high. Despite being scientifically unjustified, studies consensus measure of remission” (p. 1298), presumably so were pooled to produce a misleading global recovery as to ensure that participants really were recovered and proportion. not just in remission. The conclusion in the Jääskeläinen paper that “We found What recovery rates were found? They ranged across no evidence to suggest that we are “getting better” at getting the 50 included studies from 0 % to 58 %. Even to the our patients better” (p.1305) perhaps indicates that the casual observer, this might raise some concerns about review was conducted from the assumptions of a clinical simply pooling the data to produce a single overall esti- recovery perspective. The desire to produce a number – an mate of recovery rate. This problem of combining apples empirically justified answer to the reasonable question and oranges is known in the systematic review trade as ‘How many people recover?’– maybeunderstandable heterogeneity, defined as the extent to which there are from this perspective. But it is also toxic. The implicit genuine differences underlying the results of included assumption that ‘mental illness is an illness like any other’ studies. Dealing with heterogeneity is a standard chal- is consistent with a clinical recovery perspective, but has lenge in systematic reviews. Are the included studies negative consequences on community attitudes [38]; in- sufficiently similar to be pooled (or ‘meta-analysed’)to deed, the evidence that it is a counter-productive message produce an overall estimate of recovery rate? is so strong that it is no longer used in population-level Two approaches are used in review methodology to campaigns to reduce mental health-related stigma [39]. test for heterogeneity. Visual inspection involves ‘eyebal- From the perspective of personal recovery (the newer ling’ the data, and the huge variation in recovery rates in and now dominant international understanding of Figure 2 of the paper would not give most analysts much recovery), there is a large knowledge gap. There is only confidence that pooling is justified. The second ap- a small and inconclusive empirical evidence base about proach is statistical, using a test called the I statistic, the relationship between clinical recovery and personal which assesses the percentage of total variation across recovery [33, 34, 40, 41]. There has been no long-term studies due to heterogeneity. This number ranges from epidemiological research (i.e. over decades) to under- 0 % to 100 %, and the standard rule-of-thumb for this stand how the development of an identity as a person in statistic is that 0 % indicates no heterogeneity (i.e. pool- recovery unfolds over time. A 10-year follow-up study ing the data is fully justified), 25 % indicates low hetero- published since the Jääskeläinen review investigated geneity, 50 % indicates moderate heterogeneity, and mortality, clinical and social outcomes in 557 individ- 75 % indicates high heterogeneity (i.e. pooling the data is uals with first-episode psychosis, and emphasised the not justified) [36]. In the Jääskeläinen review, the I disparity between symptom-based clinical recovery and score was 99.8 %. Despite this, all the studies were still social recovery [42]. In this analysis, 213 (65 % of 326, pooled, to produce the take-home message that 14 % of missing data 61) were not experiencing psychotic symp- people with a diagnosis of schizophrenia recover. (We toms at follow-up and 140 (46 % of 303, missing data 84) should note that the authors are aware of the issue. had been symptom free for two years or more, leading the They use a particular analysis approach – random ef- authors to observe that “the research relating to outcomes fects modelling – to addressthisissue.However, in schizophrenia and other psychoses, conducted before the Slade and Longden BMC Psychiatry (2015) 15:285 Page 6 of 14 more recent long-term course and outcome studies, has always ill’ has toxic consequences in a mental health painted an overly pessimistic picture of the clinical course” context, and should be challenged. (p.384). However, the low rates of employment (22 %) and being in a relationship (32 %) indicated that social exclu- Message 4: Diagnosis is not a robust foundation sion can remain an issue even when clinical recovery has While the use of diagnostic terms such as ‘schizophrenia’ occurred. is valid from a clinical recovery perspective, it must also A number of long-term (20 or more year) follow-up be emphasised just how contested diagnostic labels are studiesshowmorethanhalfofpeoplegiven adiagnosis in mental health. of schizophrenia experience clinical recovery [43]. At The latest taxonomy is the Diagnostic and Statistical the individual level, more and more people are telling Manual of Mental Disorders Version 5 (DSM-5) [49]. their idiosyncratic stories of recovery, in books [44, 45], Criteria for schizophrenia are shown in Table 1. web-sites (e.g. https://www.youtube.com/playlist?list=- Despite being emphasised as central diagnostic features PLE60D451CF87F4324, http://www.scottishrecovery.- in all previous editions of the DSM, it should be noted that net/Stories-from-the-narrative-research-project) and in two ‘first-rank symptoms’ (bizarre delusions and voices person. Recovery is emerging as much more common commenting and/or conversing) have now been removed than previously understood [46]. from this list due to their low reliability. In this respect, Overall, it is not scientifically justified to make a quan- diagnostic criteria for schizophrenia to be included in titative statement about recovery rates. Those that have DSM-5 were greatly contested in the years running up to been made are definitely under-estimates, and quite pos- its publication. These issues were not resolved in the scien- sibly major under-estimates, of the true likelihood of tific community. In the week before DSM-5 was launched, recovery. Thomas Insel who heads the US National Institute for Mental Health (the primary funder of mental health Message 3: If a person no longer meets criteria for a mental illness, they are not ill Table 1 DSM-5 criteria for schizophrenia An embedded assumption in the 2014 review, as in much Criteria A to F must all be met of mental health practice, is that having once been diag- A. Two or more of the following, each present for a significant portion nosed, no longer being diagnosable indicates the person is of time during a 1-month period (or less if successfully treated). At least one of these must be (1), (2), or (3): ‘in remission’ rather than not ill. Whilst it may be true that 1. Delusions a person who has had a particular diagnosis (e.g. depres- 2. Hallucinations sion, schizophrenia) has a higher likelihood than the 3. Disorganised speech 4. Grossly disorganised or catatonic behaviour general public of being diagnosable again, the re-framing 5. Negative symptoms of ‘well’ in a dichotomous categorisation system as ‘in B. For a significant portion of the time since the onset of the remission’ is a reasoning bias. ‘Well’ means well! disturbance, level of functioning in one or more major areas, such as work, interpersonal relations, or self-care, is markedly below the level achieved This reasoning bias reflects assumptions of chronicity prior to the onset (or when the onset is in childhood or adolescence, there and deterioration. For example, in discussing studies of is failure to achieve expected level of interpersonal, academic or people who experience a single episode with no recur- occupational functioning). C. Continuous signs of the disturbance persist for at least 6 months. This rence, the 2014 review cautions “…However, the latter 6-month period must include at least 1 month of symptoms (or less if percentage comes from a three-year study, which may be successfully treated) that meets Criterion A (i.e. active-phase symptoms) too short to accurately detect recurrent episodes” (p.12). and may include periods of prodromal or residual symptoms. During these prodromal or residual periods, the signs of the disturbance may be In other words, studies are criticised for being too short manifested by only negative symptoms or by two or more symptoms to detect relapse, but the possibility of being too short to listed in Criterion A present in an attenuated form (e.g. odd beliefs, detect recovery is not considered. unusual perceptual experiences). D. Schizoaffective disorder and depressive or bipolar disorder with The concept of remission is of course a common health psychotic features have been ruled out because either a) no depressive term. It can be helpful, for example in health contexts or manic episodes have occurred concurrently with the active-phase where long-term surveillance of patients with recurring ill- symptoms, or 2) if mood episodes have occurred during active-phase symptoms, they have been present for a minority of the total duration nesses is a reasonable use of resources. However, the use of the active and residual periods of the illness. of this approach in a mental health context is problematic. E. The disturbance is not attributable to the physiological effects of a One form of stigma is called diagnostic over-shadowing, a substance (e.g. a drug of abuse, a medication) or another medical condition. process by which physical symptoms are misattributed to F. If there is a history of autism spectrum disorder or a communication mental illness [47]. This is one factor underpinning the disorder of childhood onset, the additional diagnosis of schizophrenia is scandalous 20-year mortality gap for men and 15-year gap made only if prominent delusions or hallucinations, in addition to the other required symptoms of schizophrenia, are also present for at least for women between people living with and without mental a month (or less if successfully treated). illness in high income countries [48]. The view of ‘once ill, Slade and Longden BMC Psychiatry (2015) 15:285 Page 7 of 14 research in North America) announced that the NIMH not a scientific one. In fact, the more “it” is studied, was going to abandon DSM because it dealt only with the more everyone becomes convinced that “it” really is symptoms and not the genetic and neurological research “something”. (p.62) [52] which he believed ought to be used to define disease entities. Causes of ‘mental illness’ are contested. Research disci- A recent report called ‘Understanding Psychosis’ from plines across different modalities (e.g. genetic, biological, the British Psychological Society [50] concluded: psychological, social) commonly exhibit this bias – what- ever is found to be influenced by the modality of interest is …reliability remains low for most diagnoses, at least in ‘confirmed,’ and whatever is not found to be influenced is everyday clinical practice where diagnoses are often ‘unexplained’. This is as a result of the scientific method, made without detailed reference to the official which tends to find positive evidence initially even where manuals. Clinicians tend to have diagnostic more robust future investigation finds the apparent rela- ‘preferences’ and people are often given a range of tionship to be spurious. Witness the repeated discovery of diagnoses during their contact with mental health ‘the gene for X’ which proves not to be substantiated. For services. Research confirms that usage varies between example, behavioural genetics aims to establish causal rela- different doctors, hospitals and countries. Even tionships between genes and behaviour [53]. The approach experienced clinicians, who have been given extra involves identifying genetic influences (e.g. through twin training in applying the criteria, only agree on a broad studies), and unexplained variance can then be investigated diagnostic category about 50 % of the time. (p.22) through studies of shared environment (e.g. through family studies) and non-shared environment (e.g. through adop- Other credible commentators have gone further, and tion studies). This elevates the importance of evidence for argued for the abolition of the term ‘schizophrenia’ genetic influences. The same criticism of course applies to altogether [51]. Some of the issues are outlined at the search for psychological or social causes of mental http://www.schizophreniainquiry.org. illness. In the words of Abram Maslow, “I suppose it is Why is there such lack of clarity about diagnosis? One tempting, if the only tool you have is a hammer, to treat explanation is that diagnostic categories in mental everything as if it is a nail” [54]. health encompass an ever-increasing range of human A specific contested point in relation to psychosis experiences – the so-called ‘colonisation of the human experiences is the role of trauma. Scientific evidence is condition’ [15]. Maddux has characterised the process: making clear that adverse life events (particularly, but not exclusively, childhood abuse) are experienced by a The social construction of psychopathology works substantial number of people who go on to develop something like this. Someone observes a pattern of psychosis (and hence be diagnosed with ‘schizophrenia’ behaving, thinking, feeling, or desiring that deviates or ‘bipolar disorder’ or other psychosis diagnoses). This from some social norm or ideal or identifies a human was summarised in 2014 [50]: weakness or imperfection that, as expected, is displayed with greater frequency or severity by some Much evidence has now accumulated to suggest that people than others. A group with influence and power like other mental health problems, psychosis can be a decides that control, prevention, or “treatment” of this reaction to such stressful events and life circumstances, problem is desirable or profitable. The pattern is then particularly abuse or other forms of trauma [55, 56]. given a scientific-sounding name, preferably of Greek For example, voices may relate to previous trauma or Latin origin. The new scientific name is capitalised. which has left difficult feelings and memories that Eventually, the new term may be reduced to an acro- need to be explored and resolved. A review in 2008 nym, such as OCD (Obsessive-Compulsive Disorder), found that between half and three-quarters of psychiatric ADHD (Attention-Deficit/Hyperactivity Disorder), and inpatients had been either physically or sexually abused BDD (Body Dysmorphic Disorder). The new disorder as children [57]. Experiencing multiple childhood then takes on an existence of its own and becomes a traumas appears to give approximately the same risk disease-like entity. As news about “it” spreads, people of developing psychosis as smoking does for developing begin thinking they have “it”; medical and mental lung cancer [58]. (p. 42) health professionals begin diagnosing and treating “it”; and clinicians and clients begin demanding that A second reason is that the mental health system is health insurance policies cover the “treatment” of “it”. underpinned by assumptions which give primacy to the Once the “disorder” has been socially constructed and genetic and biological and more recently to the psycho- defined, the methods of science can be employed to logical, to the neglect of social understandings of mental study it, but the construction itself is a social process, distress. It has proved difficult for the mental health Slade and Longden BMC Psychiatry (2015) 15:285 Page 8 of 14 system, including research approaches, to let go of the Over-emphasising diagnosis also increases mental assumption that mental illness resides in the person. health-related stigma [67]. Presenting an understanding For example, one response to the above finding that as ‘how it really is’ reinforces the idea of a meaningful schizophrenia is more common in people who experi- gap between two groups (the ‘mad’ and the ‘sane’). The enced childhood abuse has been to search for the gen- reality is that we are all damaged in some way. etic variant which influences response to childhood The unquestioning use of mental illness diagnoses as if adversity [59]. Although all scientific research has po- they are un-contested and capture meaningful and invari- tential value, the continued effort to individualise ant individual-level diseases is difficult to justify, and may socially-caused phenomena – sometimes called ‘respon- have harmful consequences. It is reasonable for societies sibilization’ [60] – represents a reasoning bias in mental to seek defensible and transparent approaches to resource health research. Other social determinants of mental ill- allocation (e.g. welfare benefit entitlement), but the use of health include poverty, unemployment and reduced so- diagnosis is a problematic foundation. cial networks [61]. When these social causes become framed as ‘vulnerability’ factors, i.e. something about the Message 5: Treatment is one route among many to individual, then the real issues of justice, exclusion, power recovery and marginalisation are occluded. We believe that this A clinical recovery world-view is based on what might be could come to be considered to be as unacceptable as for described as a surgical metaphor. A person is healthy, then example a search for vulnerability to racism in people becomes ill (typically evidenced by a disturbance which is from ethnic minorities. If the problem is social, then social not self-corrected in balance –‘homeostasis’– in a physical solutions should be the first recourse. To put it in the lan- system of the body). Clinical intervention (e.g. surgery, guage of human rights, ‘Fix society, not people’. pharmacotherapy) restores the balance, homeostasis is re- An over-emphasis on diagnosis has adverse conse- stored, and health returns. From this perspective, treatment quences. It leads to the development of a separate sub- is instrumental to improve outcome. Such frameworks culture in which specialised rather than mainstream have been deemed ‘a technological paradigm’ in that (1) solutions are developed for people with mental health mental health difficulties are believed to arise from problems who have everyday problems [62]. For example, disordered processes within the individual, (2) are modelled the person with mental health difficulties who wants a universally and causally, independent of an individual’spar- relationship is offered social skills training, or who wants a ticular context, and (3) resulting interventions are applied job is offered pre-vocational training, or who wants to rent and evaluated independently of social/interpersonal values, an apartment is offered training to be a good tenant. Con- narratives, and relationships [68]. Such frameworks have trast these responses with how such requests would be been strongly criticised on the grounds that they are poorly responded to in non-clinical social situations. equipped for engaging with emotional suffering [69, 70]. An orientation towards recovery means starting with Furthermore, as discussed below and previously, empirical an assumption that people with mental illness are first evidence from within the paradigm does not support the and foremost people [63], so a more useful instinctive assumptions upon which it is based. response to meeting everyday problems is to support ac- By contrast, a personal recovery perspective does not cess to mainstream solutions. For example, the evidence assume treatment is needed for recovery. The emerging that Individual Placement and Support – an approach to empirical evidence indicates that individuals experien- supporting people to obtain and maintain a mainstream cing psychosis develop an identity as a person in recov- job – has superior outcomes to pre-vocational training ery through a range of routes. A systematic review of 97 (in which a person is trained to be ready for a job) is studies investigating the experience of recovery identi- overwhelming [64]. A Cochrane review synthesized 18 fied that one characteristic of the recovery journey is randomised controlled trials of reasonable quality, and that recovery can occur without professional interven- showed 18-month employment rates of 34 % for IPS tion [35]. A study of the experiences of 381 people living compared with 12 % for pre-vocational training [65]. For with psychosis found that 82 % agreed with the state- instance, a six-country European randomised controlled ment that ‘Recovery is knowing that you can help your- trial showed that individual placement and support was self become better’. superior to the local alternative in each site, in terms of These data are not an argument for reduced provision helping people find and maintain paid employment [66]. of mental health services. Mental disorders account for The same evidence base is emerging in relation to hous- 13 % of global illness burden, and major depression ing, that obtaining a tenancy and providing support to alone is expected to be the largest burden contributor by retain it is more effective than pre-tenancy training or 2030 [71]. Mental disorders are predicted by 2030 to ac- first meeting eligibility requirements (e.g. demonstrated count for nearly a third of the projected US$47 trillion sobriety) [46]. incurred by all non-communicable health conditions Slade and Longden BMC Psychiatry (2015) 15:285 Page 9 of 14 [72]. However, the vast majority of countries allocate less psychiatric care (e.g. loudness, location, personification, than 2 % of their health budgets to mental health [73]. This underlying neural activity) [86], with hallucinations found creates a ‘treatment gap’ between the 2 % allocated and to be associated with delusions in the general population 13 % needed, which should be reduced not widened. A 58- in the same way that they are in psychosis [87]. In this country survey of this treatment gap demonstrated a global respect, a more consistent predictor of distress and clinical consensus that around 10 % of health spend should be need appears to be emotional responses to, and negative allocated. Scaling up of mental health services is needed, beliefs about, the voices one hears rather than objective especially in low and middle income countries [74]. presence alone [86], which, at least in some cases, may be Rather, these data support the argument for levelling up influenced by exposure to trauma and social adversity – focussing more resources on the wider contributors to [88–92]. Similarly, distressing persecutory ideation and recovery. More research is needed, but candidate targets delusional beliefs show a clear spectrum across the general are supporting families in their caring role [75], providing population [93–95], with paranoia associated with similar decent housing [76], engaging with employers to help edu- psychological factors (e.g. depression, anxiety, interper- cate them in the work-place adjustments needed by people sonal sensitivity, trauma exposure) in both clinical and experiencing mental health problems [77], developing op- non-clinical groups [96]. Taken together, there is plausible portunities for people with personal experience of mental evidence that psychosis is a dimensional phenomenon that illness and recovery to be involved in and lead at all levels lies on a continuum with normal human experience rather in the mental health system [78], political activism by than a categorical ‘present or absent’ event [97–99]. mental health professionals [79], the use of peer-support People living with experiences considered typical of initiatives [80], and applying societal campaigns such as psychosis may not be in contact with mental health Time to Change [81] to challenge stigma in the mental services for a range of reasons, including: health system [82] and wider society. The overarching aim is a re-orienting of the mental health system around the  they choose not to have contact with the mental goal of ensuring access for people experiencing mental health system health problems to the normal entitlements of citizenship  they are either not distressed by their experiences, [83]. In turn, there is also a strong rationale for dispensing or actively value them more resources towards primary prevention efforts, e.g.  they have a good support network addressing factors like domestic violence, peer bullying,  they choose not to disclose because they fear being and childhood abuse [56]. stigmatised if they are given a diagnosis of a mental Over-emphasising the importance of treatment as the illness sole route to recovery is both empirically un-justified and  they have a non-medical or non-psychological maintains many wider contextual hindrances to recovery. framework for their experiences (e.g. supernatural, Key processes involved in recovery are connectedness, spiritual, cultural, technological) and do not identify hope, a positive identity, meaning and empowerment [35]. with models used in mental health services These processes can and do occur outside of the mental health system. So the explanations provided in the 2014 review for not being in contact with mental health services (either not Message 6: Some people choose not to use mental health knowing about services, or experiencing financial or other services access barriers) is incomplete. Many people make choices Many people live with psychosis-like experiences without to live with ‘symptoms’ associated with psychosis outside requiring (or wanting) input from mental health services. of the mental health system. Research to understand the For example voice hearing (‘auditory hallucinations’), a influences on this choice, and resulting impact on people’s cardinal symptom of psychosis, may be often reported experiences, should be a priority. However, the implication amongst those in good psychological health and with no that all people should be in contact with mental health history of mental health service contact. Prevalence esti- services, and therefore that using mental health services mates vary according to the age range examined and the should be either a requirement or an indicator of benefits ways in which voice hearing is defined, but is estimated to entitlement, is not justified. reach a median of 13.2 % in the adult general population [84]. Considering that lifetime rates of psychosis are esti- Message 7: The impact of mental health problems is mated to range from 0.2 % (narrowly defined criteria) to mixed 0.7 % (broadly defined) [85], it is clear that many more The picture conveyed in the 2014 review is that the im- individuals hear voices than are diagnosed with psychosis. pact of mental illness is solely and inevitably negative. In turn, voice hearing can show numerous phenomeno- Without denying the pain and distress of many people logical similarities in people with and without a need for who live with mental health difficulties, this perspective Slade and Longden BMC Psychiatry (2015) 15:285 Page 10 of 14 is both unjustified and unduly pessimistic. On the contrary, subjectively meaningful experience which, with the right survivor testimony indicates that the process of surviving support, can be lived with peacefully and profitably. Cor- mental health challenges – including psychosis – can respondingly, the Movement emphasises the possibility of ultimately be transformative, enriching and a source of empowerment and psychological growth, as well as personal and social growth [44, 100–102]. For example: exploring the interpersonal and socio-political implica- tions of the identity of ‘voice hearer’ [44, 111–113]. Al- Recovery to me is not only coming to terms with what though the Movement emphasises partnership and has happened in my life…but having grown as an alliance between ‘experts by profession’ (clinicians, aca- individual because of my experiences…I can now look demics) and ‘experts by experience’ (service-users, their back in time and know that everything that happened friends and family), many of its prominent members are helped me to become the person I am today. [103] former psychiatric patients who testify to how their (p.46) distressing experiences have ultimately informed and augmented their wellbeing (e.g. through a heightened capacity for political engagement, creativity, compassion, fortitude, and self-knowledge) [44, 100, 102, 114]. Yes I am MAD! I am not in remission I am not on In turn, the concept of the ‘survivor mission’ captures a trajectory I am not a syndrome I am not how one may transform and transcend one’s experiences delusional. I am living my life. I am living the of adversity in a positive way [115]. For example, mental dream. [104] (p.178) health workers with their own history of emotional distress may often exhibit greater professional engagement than colleagues without such experiences [116], and the value of employing peer-support workers within services is likewise I’m now inspired to speak about the possibilities of well-recognised [117]. Similarly, adversities that are closely recovery, to spread a message of hope, to break down associated with complex mental health difficulties, such as barriers/stigmas… I now believe anything is possible. childhood abuse [118] and violent victimisation [119], can [105] (p.246–247) in themselves be a means of ‘posttraumatic growth’ in the sense of inducing positive psychological, social, and inter- personal changes. Taken together such findings attest to For most of my life I have studied the phenomena the fact that while mental health problems may be devas- known as madness, my own and others…Forging tating and life-changing, they can also lead to a heightened friendships with my peers, I found community in our sense of perspective and purpose. shared experience and our passion for helping fellow travellers. We helped ourselves find meaning when we Summary helped others. [106] (p.272) This article has identified seven scientifically defensible, relevant and helpful messages about recovery. These messages are intended to be applicable to individuals affected by mental health problems, their family and So why would I want anything to do with this illness? other informal supporters, and mental health workers. Because I honestly believe that as a result of it I have felt more things, more deeply; had more experiences, Message 1: Recovery is best judged by the person living more intensely; loved more, and been more loved; with the experience laughed more often for having cried more; appreciated The most important judge of recovery is the person more the springs for all the winters;… and slowly directly affected. Therefore the individual’s values and learned the values of caring, loyalty, and seeing things preferences for specific treatments or other forms of through. [107] (p.218) support should be central. As noted by Repper, recovery involves the realisation Message 2: Many people with mental health problems that there are aspects of mental health challenges that can recover provide growth and positive gain [108]. A particular locus Living well with and beyond ‘illness’ experiences is possible for this perspective comes from the International Hearing for many people. It involves personal effort and support Voices Movement, a prominent psychiatric survivor or- from others. In relation to benefits entitlement, the criter- ganisation that works to reframe conventional disease ion of ‘permanent disability’ in a mental health context is models of voice hearing [109, 110]. A central tenet of the toxic, and should not be used. If a time criterion is needed Hearing Voices Movement is that voice hearing is a then a duration relating to a reasonable review period Slade and Longden BMC Psychiatry (2015) 15:285 Page 11 of 14 should be used, such as ‘expected to persist for at least one evidence disconfirming the discourse [120]. We believe year’. that the dominant discourse within mental health is one of limitations, in which clinical and research skills are Message 3: If a person no longer meets criteria for a more oriented towards identifying for example disabil- mental illness, they are not ill ities than strengths, risk factors than protective factors, The more a person can develop a rich and layered iden- vulnerability than resilience, and threats than opportun- tity as a person in recovery, rather than a thin identity as ities. Such a discourse is more likely to produce pessim- a ‘patient’, the more they will develop resilience and the istic results. As our goal in this selective review was to ability to meet the challenges of life. provide a balancing rather than balanced perspective, we therefore included more quotes and links to narrative Message 4: Diagnosis is not a robust foundation web-sites than typical in scientific papers. Our aim was to Diagnosis is helpful to some but not all people. There- increase the visibility of evidence from the subjective fore it should be used if helpful, but having a different experience of individuals. Future reviews should use meth- understanding of experiences (e.g. as a response to odologies such as narrative synthesis [121] to integrate the trauma rather than as an illness) is scientifically justified full range of nomothetic evidence from studies of groups and for some people can be a turning point on their and idiographic evidence from studies of individual [122], road to recovery. Diagnosis is a convenient criterion in with the aim of providing a balanced and helpful appraisal relation to benefits entitlement, but is contested. Some of the empirical evidence about recovery. people choose not to accept their diagnosis, and framing Abbreviations their experience in other ways has a positive influence DSM: Diagnostic and Statistical Manual of Mental Disorders; IPS: Individual on their recovery. Making people accept a label in order Placement and Support. to access entitlements therefore has negative conse- Competing interests quences. New approaches to allocating social resources The authors declare that they have no competing interests. are needed, which reduce rather than enhance stigma. In the short term, one step towards reducing benefits- Authors’ contributions MS and EL made substantial contributions to conception and design, were related stigma would be to allow disagreement with a involved in drafting the manuscript, gave final approval of the version to be diagnosis to be recorded on claim forms without impact- published, and agree to be accountable for all aspects of the work. ing on entitlement. In the longer term, less contested ap- proaches than diagnosis are needed. Authors’ information MS is a clinical academic. He leads a research team at King’sCollege London focussing on empirical research into recovery and wellbeing Message 5: Treatment is one route among many to (see researchintorecovery.com), and is a practising clinical psychologist in a recovery communityforensicmentalhealthteam. He thus worksinboththe scientific world which values particular types of knowledge and the clinical It is reasonable to expect a full range of established world which involves individuals struggling to find a way forward in their pharmacological, psychological and social interventions life, and creating complex ethical and practice dilemmas for professionals. to be widely available and competently provided in high He is influenced by his professional identity as a clinical psychologist, which socialises into a multiple-model view of the world, and he has concerns income countries. However, some people find other ways about invariant solutions to complex human problems. He has also been forward in their life – there is more than one road to influenced by people with lived experience of mental health problems and recovery. recovery, who have taught him that there are many routes to recovery. He therefore believes that scientific enquiry should be methodologically rigorous, and generalisation should be thoughtful and cautious. Message 6: Some people choose not to use mental health EL is a postdoctoral researcher at the University of Liverpool and has previously services worked clinically in an Early Intervention in Psychosis service. She contributes to such consumer-led initiatives as the International Hearing Voices Movement People choose not to use mental health services for a (www.intervoiceonline.org) and Soteria Network (www.soterianetwork.org.uk) range of reasons. Of these, some would benefit from and additionally has lived experience of trauma, dissociation and psychosis. As them, and others live well outside of services. such she views her work as informed by a fusion of ‘expertise by profession’ and ‘expertise by experience’. Her combination of perspectives have led her to emphasise the role of life events, particularly those that are adversarial and Message 7: The impact of mental health problems is emotionally overwhelming, in influencing the course and content of mental mixed distress. However, she also advocates the importance of deferring to individual wisdom, insights and preferences for optimal mental health care; both for Recovery may not mean getting one’s previous life back – treatment needs and how a client conceptualises their experiences none of us can go backwards – but many people identify (e.g. psychological, medical, spiritual and/or cultural). She is additionally that the experience of mental ill-health has unexpected concerned with issues of social justice, and the influence of oppressive and inequitable systems in perpetuating mental ill health. benefits. All discourses, including scientific ones, are vulnerable Acknowledgements to confirmation bias, in which evidence supporting the This article is based on a report commissioned and funded by MI Fellowship discourse is more likely to be noticed and accepted than [123]. The funders had no role in the collection, analysis, and interpretation Slade and Longden BMC Psychiatry (2015) 15:285 Page 12 of 14 of data, in the writing of the manuscript, or in the decision to submit the 25. Mental Health Commission. Blueprint II: How things need to be. Wellington: manuscript for publication. Mental Health Commission; 2012. 26. Department of Health Social Services and Public Safety (Northern Ireland). Author details Service Framework for Mental Health and Wellbeing. 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