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National Collaborating Centre for Mental Health (UK). Psychosis and Schizophrenia in Adults: Treatment and Management: Updated Edition 2014. London: National Institute for Health and Care Excellence (UK); 2014. (NICE Clinical Guidelines, No. 178.)

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Psychosis and Schizophrenia in Adults: Treatment and Management: Updated Edition 2014.

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2PSYCHOSIS AND SCHIZOPHRENIA IN ADULTS

This guideline is concerned with the treatment and management of the non-specific diagnosis of psychosis and with the more specific diagnosis of schizophrenia in adults, as defined in the International Classification of Diseases, 10th Revision (ICD-10) (World Health Organization, 1992), in the community, in hospital and in prison. The term ‘psychosis’ covers a set of related conditions, of which the commonest is schizophrenia, and includes schizoaffective disorder, schizophreniform disorder, delusional disorder and the so-called non-affective psychoses. This guideline does not address the treatment and management of other psychotic disorders, such as bipolar disorder and unipolar psychotic depression, or psychosis and schizophrenia in children and young people, because they are covered by other NICE guidelines.

2.1. THE DISORDER

2.1.1. Symptoms and presentation

Psychosis and the specific diagnosis of schizophrenia represent a major psychiatric disorder (or cluster of disorders) in which a person’s perceptions, thoughts, mood and behaviour are significantly altered. Individuals who develop psychosis or schizophrenia will each have their own unique combination of symptoms and experiences, which will vary depending on their particular circumstances.

In the decade since the first NICE guideline on schizophrenia (2002b), there has been a considerable shift in understanding the complexity of psychosis and schizophrenia, with a greater appreciation of the role of affect in non-affective psychoses, and in the continua of processes that underlie the disorders. Current understanding is ‘still limited by the substantial clinical, pathological and etiological heterogeneity of schizophrenia and its blurred boundaries with several other psychiatric disorders, leading to a ‘fuzzy cluster’ or overlapping syndromes, thereby reducing the content, discriminant and predictive validity of a unitary construct’ (Keshavan et al., 2011).

Typically, there will be a ‘prodromal’ period often characterised by some deterioration in personal functioning. Difficulties may include memory and attention problems, social withdrawal, unusual and uncharacteristic behaviour, disturbed communication and affect, unusual perceptual experiences, which are accompanied by bizarre ideas, poor personal hygiene, and reduced interest in day-to-day activities. During this prodromal period, people with psychosis often feel that their world has changed, but their interpretation of this change may not be shared by others. Relatives and friends usually notice this as changes ‘in themselves’. The changes may affect the person’s ability to study, to hold down employment, or maintain relationships; they may become increasingly isolated.

This prodromal period is typically followed by an acute phase marked by positive symptoms, such as hallucinations (hearing, seeing or feeling things that others do not), delusions (markedly unusual or bizarre ideas), behavioural disturbances such as agitation and distress, and disorders of thinking so that speech becomes muddled and hard to understand. If these acute problems resolve, usually after some treatment, the positive symptoms may disappear or reduce, but it is common for negative symptoms such as poor motivation, poor self-care and poor memory and attention to remain problematic. This may interfere with the person’s ability to return to study, to work and to manage their day to day activities.

Affective dysfunction and comorbidities are now recognised to be highly prevalent in people with psychosis and schizophrenia; indeed those studies that have analysed the symptom structure of psychotic experience, all include a dimension of depression and related symptoms, even in ‘non-affective’ diagnoses (Russo et al., 2013). Over 90% of individuals with first episode psychosis report depression in the prodrome, during the acute episode, or in the year following recovery of positive symptoms (Upthegrove et al., 2010). Social anxiety disorder that is not attributable to paranoia is present in up to a third of individuals with psychosis and schizophrenia, with similar figures for post-traumatic stress disorder (PTSD). While figures for social anxiety disorder and PTSD remain constant across phases, depression tends to peak during the prodrome and in acute psychosis but declines to about one-third following recovery. It has been shown that there are several pathways to emotional dysfunction in psychosis, including the common background of social risk factors for both psychosis and depression and as a psychological reaction to the diagnosis itself (Birchwood, 2003).

People vary considerably in their pattern of symptoms and problems and in the resulting course of any remaining difficulties. While most people will recover from the initial acute phase, only 14 to 20% will recover fully. Others will improve but have recurrent episodes or relapses, the timing of which are related to stress, adversity, social isolation and poor take-up of treatments. Thus some people have disturbing experiences only briefly, whereas others will live with them for months or years. In the longer term (up to 15 years) over half of those diagnosed will have episodic rather than continuous difficulties. As Harrow and colleagues (2005) have observed, ‘some of these intervals of recovery will appear spontaneously and may be tied to individual factors, such as resilience.’

2.1.2. At risk mental states

In recent years there has been a growing emphasis on early detection and intervention in order to delay or possibly prevent the onset of psychosis and schizophrenia. This focus on very early intervention and prevention has stimulated an interest in identifying, and potentially intervening in, the so-called ‘at risk mental states’ (or prodrome) which may precede the onset of the disorder.

At risk or ‘ultra-high risk’ mental states, are characterised by help-seeking behaviour and the presence of attenuated (subclinical) positive psychotic symptoms, brief limited intermittent psychotic symptoms or a combination of genetic risk indicators, such as the presence of schizotypal disorder, with recent functional deterioration. Although the risk for schizophrenia emerging over a 12-month period appears to be increased (between one in five to one in ten may be expected to develop a schizophrenic disorder (Ruhrmann et al., 2010)), it remains the case that prediction of schizophrenia based on at risk or ultra-high risk mental states is modest given that the majority of those identified do not become psychotic. Furthermore, most people identified with at risk mental states have a mixture of other mental health problems (for example, depression, anxiety, substance-use disorders or emerging personality disorder) requiring a range of targeted interventions. In addition, the potential use of a clinical label that conveys a future risk of psychosis or schizophrenia raises ethical issues and may itself be perceived as stigmatising. It may be that at risk or ultra-high risk mental states are best viewed as a dimension rather than a diagnostic category, including at one extreme people with non-specific symptoms and at the other those on the cusp of psychosis. Finally, given the low rate of transition to psychosis, any interventions used must benefit (and not harm) the majority of people (false positives) who do not develop psychosis.

2.1.3. Impairment and disability

Although the problems and experiences associated with psychosis and schizophrenia are often distressing, the effects of the disorder can be pervasive. A significant number of people continue to experience long-term impairments, and as a result psychosis and schizophrenia can have a considerable effect on people’s personal, social and occupational lives. A European study of six countries found that over 80% of adults with this diagnosis had some persistent problems with social functioning, though not all of them were severe. The best predictor of poorer functioning in the long term was poor functioning in the first 3 years post-diagnosis (Wiersma et al., 2000), particularly for unemployment, which was linked to duration of untreated psychosis and increased negative symptoms (Turner et al., 2009). Current estimates of employment for people with schizophrenia are 5 to 15% with an average of 8% (Schizophrenia Commission, 2012), which is significantly less than the general population (of which 71 % are currently employed).

The disabilities experienced by people with psychosis and schizophrenia are not solely the result of recurrent episodes or continuing symptoms. Unpleasant side effects of treatment, social adversity and isolation, poverty and homelessness also play a part. These difficulties are not made any easier by the continuing prejudice, stigma and social exclusion associated with the diagnosis (Sartorius, 2002; Thornicroft, 2006).

Worldwide, it has been estimated that schizophrenia falls into the top fifteen medical disorders causing disability (Murray et al., 2013). Mortality among people with schizophrenia is approximately 50% above that of the general population. This is partly as a result of an increased incidence of suicide (an approximate lifetime risk of 5% (Hor & Taylor, 2010)) and violent death, and partly because of an increased risk of a wide range of physical health problems.

Cardiovascular events have been found to be the largest single contributor, with illnesses associated with obesity, metabolic aberrations, smoking, alcohol, lack of exercise, poor diet and diabetes, making significant contributions (von Hausswolff-Juhlin et al., 2009). The precise extent to which high mortality and disability rates are, at least in part, a result of some of the medications prescribed for schizophrenia is still not clear (Weinmann et al., 2009). Difficulties experienced by people with mental health problems in accessing general medical services in both primary and secondary care continue to contribute to reduced life expectancy (Lawrence & Kisely, 2010). Recent work indicates that young Caribbean and African men, and middle-aged women from diverse ethnic or cultural backgrounds, are at higher risk of suicide, and that this may be because of differences in symptom presentation and conventional risk-factor profiles across ethnic groups (Bhui & McKenzie, 2008).

2.1.4. Prognosis, course and recovery

Historically, many psychiatrists and other healthcare professionals have taken a pessimistic view of the prognosis for schizophrenia, regarding it as a severe, intractable and often deteriorating lifelong illness. This negative view has failed to find confirmation from long-term follow-up studies, which have demonstrated considerable variations in long-term outcome. While it is estimated that around three-quarters of people with schizophrenia will experience recurrent relapse and some continued disability (Brown et al., 2010), the findings of follow-up studies over periods of 20 to 40 years suggest that there is a moderately good long-term global outcome in over half of people with schizophrenia, with a smaller proportion having extended periods of remission of symptoms without further relapses (Banham & Gilbody, 2010; Harrison et al., 2001; Jobe & Harrow, 2005). It should also be noted that some people who never experience complete recovery from their experiences nonetheless manage to sustain an acceptable quality of life if given adequate support and help.

The early stages of psychosis and schizophrenia are often characterised by repeated exacerbation of symptoms such as hallucinations and delusions and disturbed behaviour. While a high proportion respond to initial treatment with antipsychotic medication, around 80% will relapse within 5 years of a treated first episode, which is partly explained by discontinuation of medication (Brown et al., 2010).

Research has suggested that delayed access to mental health services and treatment in early psychosis and schizophrenia – often referred to as the duration of untreated psychosis – is associated with slower or less complete recovery, and increased risk of relapse and poorer outcome in subsequent years (Bottlender et al., 2003; Harrigan et al., 2003; Robinson et al., 1999).

In the UK and other countries early intervention in psychosis teams have been introduced with an aim of reducing delay to treatment in order to try to improve outcomes. In the longer term, the factors that influence the differential recovery from psychosis and schizophrenia are not well known. But recovery may happen at any time, even after many years (Harrison et al., 2001).

A number of social and economic factors appear to affect the course of psychosis and schizophrenia. For example, in developed countries it is well established that psychosis and schizophrenia is more common in lower socioeconomic groups. However, this appears to be partly reversed in some developing countries (Jablensky et al., 1992), suggesting that the relationship between incidence, recovery rates, and cultural and economic factors is more complex than a simple correspondence with socioeconomic deprivation (Warner, 1994). There is some evidence that clinical outcomes are worse in Europe than in East Asia, Latin America, North Africa and the Middle East (Haro et al., 2011).

The risk factors for developing psychosis and schizophrenia and the acceptability of interventions and the uptake of treatments have been shown to vary across ethnic groups. Although the focus in the UK has been on African and Caribbean populations, some evidence suggests other ethnic groups and migrants in general may be at risk; social risk factors may be expressed through an ethnic group, rather than being an intrinsic risk for that ethnic groups per se. However, the different pattern of service use, access to services and perceived benefits across ethnic groups is a cause of concern among service users.

The effects of psychosis and schizophrenia on a person’s life experience and opportunities are considerable; service users and carers need help and support to deal with their future and to cope with any changes that may happen.

2.1.5. Diagnosis

Although a full discussion of the diagnoses of psychosis and schizophrenia is outside the scope of this guideline, some specific issues are discussed here to provide context.

ICD-10 (World Health Organisation, 1992) describes symptom clusters necessary for the diagnosis of different subtypes of schizophrenia. For some subtypes, ICD-10 requires that clear psychotic symptoms be present for only 1 month, with any period of non-specific impairment or attenuated (prodromal) symptoms that may precede an acute episode not counted. In ICD-10, evidence of deteriorating and impaired functioning in addition to persistent psychotic symptoms is essential for a diagnosis. Isolated psychotic symptoms (typically auditory hallucinations) without functional impairment are surprisingly common in both the general population (van Os et al., 2009) and people with emotional disorders such as anxiety and depression (Varghese et al., 2011); such experiences should not be confused with a diagnosis of a psychotic disorder or schizophrenia.

The experience of a psychotic disorder challenges an individual’s fundamental assumption that they can rely upon the reality of their thoughts and perceptions.

This is often both frightening and emotionally painful for both the service user and for those close to them. For this experience then to be classified as a disorder and to acquire a diagnostic label may either be helpful in facilitating understanding or may be experienced as yet a further assault upon one’s identity and integrity. Professionals need to be aware of both the positive and negative impacts of discussing a diagnosis (Pitt et al., 2009); positive aspects can include naming the problem and providing a means of access to appropriate help and support; negative aspects can include ‘labelling’ the person, stigma and discrimination and disempowerment. The toxicity of the label of ‘schizophrenia’ has led to calls to abandon the concept altogether (Bentall et al., 1988) or to rename the condition (Kingdon et al., 2007). This has led to some professionals and user/carer groups questioning the usefulness of diagnosis and instead preferring to emphasise a narrative or psychological formulation of an individual’s experiences. There is some evidence that psychosocial explanations of psychosis are less associated with stigma, desire for social distance and perceptions of dangerousness and uncontrollability than biomedical explanations (such as a diagnosis of an illness) in the general public (Read et al., 2006), healthcare professionals (Lincoln et al., 2008) and service users (Wardle et al., In press).

The majority of people for whom a diagnosis of psychosis or schizophrenia is being considered will be in their first episode of illness, although the literature on duration of untreated psychosis would suggest some of these may have had psychotic experiences for many years (Marshall et al., 2005). The future course and diagnostic stability of an initial psychotic episode shows much variation, with a sizable proportion (approximately 20%) only having one episode (Rosen & Garety, 2005). In addition to a lack of predictive validity regarding course and outcome, there are also significant problems with the reliability of the diagnosis (Bentall, 1993). It is recognised that accurate diagnosis is particularly challenging in the early phases of psychosis, which has led early intervention for psychosis services to ‘embrace diagnostic uncertainty’ (Singh & Fisher, 2005).

For all of the above reasons, the less specific umbrella term ‘psychosis’ has, therefore, found increasing favour in some professionals and some user/carer groups.

2.1.6. Physical health

The association between psychosis/schizophrenia and poor physical health is well established (Marder et al., 2003). Males with schizophrenia die 20 years earlier and females 15 years earlier than the general population (Wahlbeck et al., 2011). About a fifth of premature deaths arise from suicide and accidents but most are accounted for by physical disorders (Brown et al., 2010; Lawrence et al., 2013; Saha et al., 2007), which include cardiovascular disorders (for example, coronary heart disease, peripheral vascular disease and stroke), metabolic disorders such as diabetes mellitus, chronic obstructive pulmonary disease, certain cancers and infectious disorders such as HIV, hepatitis C and tuberculosis (Leucht et al., 2007). And although not life-threatening, difficulties such as sexual dysfunction, dental caries (Friedlander & Marder, 2002), constipation and nocturnal enuresis (Barnes et al., 2012) can be distressing and socially isolating.

While much of the increased burden of poor physical health can be explained by the nature of psychosis and schizophrenia and side effects of treatment, this ‘undoubtedly also results from the unsatisfactory organization of health services, from the attitudes of medical doctors, and the social stigma ascribed to the schizophrenic patients’(Leucht et al., 2007). Despite having two to three times the likelihood of developing diabetes mellitus compared with the general population, this condition often goes unrecognised in people with schizophrenia. In a study from the Maudsley hospital in London, a chart review indicated that 39 (6.1%) of 606 inpatients had diabetes or impaired glucose tolerance; when undiagnosed individuals were formally tested for diabetes by a fasting blood glucose measurement, a further 16% were discovered to have either diabetes or impaired fasting glucose (Taylor et al., 2005). A European study screening people with schizophrenia who were not known to have diabetes, discovered 10% had type 2 diabetes and 38% were at high risk of type 2 diabetes; this population’s average age was only 38 years (Manu et al., 2012).

A recent Scottish study of 314 general practices compared the nature and extent of physical health comorbidities between 9,677 people with psychosis and schizophrenia and 1,414,701 controls (Smith et al., 2013). Based on the presence of a possible recorded diagnosis for 32 index physical conditions, the study found that people with schizophrenia were more likely to experience multiple physical comorbidities: higher rates of viral hepatitis, constipation and Parkinson’s disorder but lower than expected rates of CVD. The authors concluded there was a systematic under-recognition and under treatment of CVD in people with schizophrenia in primary care, which might contribute to the substantial cardiovascular-related morbidity and premature mortality observed in this group.

A similar picture of late recognition and under-treatment is apparent for cancer, although intriguingly a recent study from Sweden revealed decreased incidences of certain cancers in people with schizophrenia and their unaffected relatives (Ji et al., 2013). The authors suggested that familiar/genetic factors contributing to schizophrenia may protect against the development of cancer; this protective effect did not hold for breast, cervical and endometrial cancers, where rates were higher in women with schizophrenia. Nevertheless, even with these protective factors towards certain cancers, people with schizophrenia are more likely to have metastases at diagnosis and less likely to receive specialised interventions (Kisely et al., 2013), which explains why they are still more likely to die prematurely from cancer than the general population (Bushe et al., 2010).

The impact of cardiovascular diseases

The reduction in cardiovascular morbidity and mortality seen in the general population over the last 2 decades has not been seen in people with severe mental illness in whom CVD remains the single biggest contributor to premature death (Saha et al., 2007). Moreover, there is a widening mortality gap for people with schizophrenia mainly as a result of higher relative rates of CVD compared with the general population (Brown et al., 2010; Hennekens et al., 2005; Lawrence et al., 2003; Osborn et al., 2007a).

CVD may result from the body’s response to persisting stress/distress, potential genetic vulnerabilities, lifestyle issues (for example, tobacco use, diet, sedentariness, poverty and exclusion) and psychiatric medication (De Hert et al., 2009b). The tendency for metabolic risks to cluster together is conceptualised within the metabolic syndrome, reliably predicting future CVD, diabetes and premature death; the presence of central obesity is a core factor, usually combined with evidence of impaired glucose handling, lipid abnormalities and hypertension (Alberti et al., 2005). This is a significant problem for those with established schizophrenia (De Hert et al., 2009b); for example, a Finnish cohort study revealed that by the age of 40 metabolic syndrome was four times more likely than in non-psychiatric populations (Saari et al., 2005).

Antipsychotic medication

Antipsychotic medication may cause metabolic/endocrine abnormalities (for example, weight gain, diabetes, lipid abnormalities and galactorrhoea), neurological disorders (for example, tardive dyskinesia) and cardiac abnormalities (for example, lengthened QT interval on electrocardiography) (American Diabetes Association et al., 2004; Expert Group, 2004; Holt et al., 2005; Koro et al., 2002; Lieberman et al., 2005; Lindenmayer et al., 2003; Nasrallah, 2003; Nasrallah, 2008; Saari et al., 2004; Thakore, 2005). The effects of antipsychotics on CVD risk factors such as weight gain and diabetes are examined in the sections below.

Weight gain, metabolic disturbance and antipsychotic medicines

The prevalence of obesity has increased dramatically in the general population over the last 30 years, and has escalated even more rapidly in people with schizophrenia (Homel et al., 2002). It seems likely that environmental changes have provoked these increases in both populations but schizophrenia may also have disease-specific effects, such as genetic susceptibility, that have additive or synergistic actions to increase weight further. However the most important factor related to weight gain in people with schizophrenia is the use of antipsychotics, which are among the most obesogenic drugs. Moreover a causal link between antipsychotics and weight gain appears certain (Foley & Morley, 2011; Kahn et al., 2008; Tarricone et al., 2010). This is important because weight gain may lead to insulin resistance and other adverse impacts such as dyslipidaemia, diabetes and hypertension. The true impact may have been obscured by a lack of critical evaluation of weight gain specifically in people never previously exposed to antipsychotics. Many of the antipsychotic trials used short follow-up times observing older people with established illness, many of whom may already have gained weight from previous antipsychotic exposure. In contrast the European First Episode Schizophrenia Trial (EUFEST) (Kahn et al., 2008), examining weight gain in a treatment-naïve group of people with a first episode, found that the percentage of those gaining more than 7% of body weight during the first year of treatment was 86% for olanzapine, 65% for quetiapine, 53% for haloperidol and 37% for ziprasidone. Citing the findings of this study, Nasrallah concluded that neither ‘first-generation’ antipsychotics, such as haloperidol, nor drugs promoted as being metabolically benign ‘second-generation’ antipsychotics, such as ziprasidone, could be regarded as exceptions to the generalisation that any antipsychotic was capable of causing significant weight gain (Nasrallah, 2011). A more recent EUFEST study also revealed that pre-treatment rates of metabolic syndrome were no different from prevalence rates estimated in a general population of similar age (Fleischhacker et al., 2012).

Underlining the differential impact of antipsychotics on a treatment-naïve population, a recent systematic review concluded that antipsychotic-induced weight gain had been underestimated three- to four-fold in those with first episode psychosis (Alvarez-Jimenez et al., 2008). Indeed the majority of the weight gained will have done so within the first 3 years of treatment (Addington et al., 2006).

Because first episode psychosis often commences when a person is in their late teens and 20s (Kirkbride et al., 2006) the impact of antipsychotics may coincide with a critical development phase. Although limited comparative data hampers conclusions, younger people appear more vulnerable to side effects than older people (weight gain, extrapyramidal symptoms, metabolic problems, prolactin elevation and sedation (Kumra et al., 2008)). Risk of weight gain may also be more likely in those with a low baseline weight (De Hert et al., 2009a). Not only can early weight gain eventually lead to obesity-related metabolic and cardiac disorders, but it may also restrict healthy physical activities as basic as walking, and lead to a lack of self-worth and confidence to participate (Vancampfort et al., 2011). In addition, other adverse effects such as hyperprolactinaemia (causing menstrual disturbances, sexual dysfunction and galactorrhoea) (Fedorowicz & Fombonne, 2005) and movement disorders can result in poor medicine concordance, which in turn may lead to this vulnerable group of young people experiencing a cycle of relapse and disillusion with services (Hack & Chow, 2001).

Lifestyle factors

Tobacco use

Smoking tobacco is more common in people with psychosis and schizophrenia than the general population, even when variation in socioeconomic status is allowed for (Brown et al., 1999; Osborn et al., 2006), with 59% already smoking at the onset of psychosis (six times more frequently than age-matched peers without psychosis (Myles et al., 2012)). Whereas average smoking rates in the UK have fallen in the general population from around 40% in 1980 to 20% currently (Fidler et al., 2011), rates for people with established schizophrenia remain around 70% (Brown et al., 2010), and this group may also be less likely to receive smoking cessation advice thereby missing out on effective prevention of a potent cause of premature death (Duffy et al., 2012; Himelhoch & Daumit, 2003). Paradoxically rates of lung cancer appear uninfluenced (Gulbinat et al., 1992; Harris & Barraclough, 1998; Jeste et al., 1996; Osborn et al., 2007a).

Diet, nutrition and physical activity

Weight can increase rapidly in the early treatment phase not only because of the use of antipsychotic medication, but also as a result of a diet that is frequently low in fruit and vegetables and high in fat and sugar, lack of physical activity and impaired motivation to change health behaviours.

Fewer than 30% of people with schizophrenia are regularly active compared with 62% of people without a serious mental illness (Lindamer et al., 2008), and fewer than 25% undergo the recommended 150 minutes per week of at least moderate-intensity aerobic activity (Faulkner et al., 2006). It may also be important to acknowledge the risks of sedentariness on cardiovascular risk; a recent study of healthy volunteers showed that minimal-intensity physical activity (standing and walking) of longer duration improves insulin action and plasma lipids more than shorter periods of moderate to vigorous exercise (cycling) in sedentary subjects when energy expenditure is comparable (Duvivier et al., 2013).

2.1.7. Incidence and prevalence

Psychosis is relatively common mental illness, with schizophrenia being the most common form of psychotic disorder. A review of the incidence of psychosis and schizophrenia in England between 1950 and 2009 (Kirkbride et al., 2012) found a pooled incidence of 31.7 per 100,000 for psychosis and of 15 per 100,000 for schizophrenia. Rates varied according to gender and age group, with rates generally reducing with age (although with a second peak in women starting in the mid to late 40s). Men under the age of 45 were found to have twice the rate of schizophrenia than women, but there was no difference in its incidence after this age. The rate of schizophrenia was found to be significantly higher in black Caribbean (RR: 5.6; 95%CI: 3.4, 9.2; I2=0.77) and black African (RR: 4.7; 95% CI: 3.3, 6.8; I2=0.47) migrants and their descendants, compared with the baseline population. The incidence of psychosis has been reported to vary from place to place with rates in south-east London (55 per 100,000 person years) being more than twice those in both Nottingham and Bristol (25 per 100,000 person years and 22 per 100,000 person years, respectively) (Morgan et al., 2006).

The National Survey of Psychiatric Morbidity in the UK found a population prevalence of probable psychotic disorder of 5 per 1000 in the age group 16 to 74 years (Singleton et al., 2003). Schizophrenia has a point prevalence averaging around 0.45% and a lifetime expectancy of 0.7%, although there is considerable variation in different areas and a higher risk in urban environments (van Os et al., 2010).

2.1.8. Possible causes

It is known that there are a number of genetic and environmental risk factors for developing psychosis and schizophrenia, but there remains uncertainty about how these factors fit together to cause the disorder (Tandon et al., 2008).

Concerning genetic risks, having a close relative with psychosis or schizophrenia is the biggest risk factor for developing a psychotic disorder (Gilmore, 2010). However, while genetic risk is substantial, it is not due to a single ‘schizophrenia’ gene, but to many genes, each of which makes a small contribution (Sullivan et al., 2003). Genetic risk may also involve rare but important events such as deletions or duplications of genes (The International Schizophrenia Consortium, 2008).

Genetic risks are not sufficient to explain why some people develop psychosis and schizophrenia while others do not – for example, most people with psychosis and schizophrenia do not have an affected relative. Therefore, there must also be environmental risks, both biological and psychosocial. Potential biological risks include: complications before or during birth (such as infections, poor nutrition while in the womb, maternal stress or birth trauma) (Meli et al., 2012); cannabis use, especially in adolescence (Arseneault et al., 2004; Moore et al., 2007); older paternal age at birth (Miller et al., 2011) and seasonality of birth (Davies et al., 2003); and exposure to the protozoan parasite toxoplasma gondii (Torrey et al., 2012). Potential psychosocial risks include: urban birth and exposure to living in cities (Vassos et al., 2012); childhood and adult adversity, including poor rearing environments, sexual, physical and emotional abuse, neglect and bullying (Bebbington et al., 2004; van Dam et al., 2012; Varese et al., 2012; Wahlberg et al., 1997); and migration, especially when the migrants are from a developing country or a country where the majority of the population is black (Cantor-Graae & Selten, 2005).

Several theories attempt to explain how genetic risks might fit together with biological and psychosocial risks to cause psychotic disorders. None of these theories are proven. One well established theory is the neurodevelopmental hypothesis (Fatemi & Folsom, 2009), which proposes that some people have a vulnerability to developing psychosis and schizophrenia that arises due to the interaction of genetic and environmental risks around the time of birth. For example, some people might have genes that increase the chances of complications before or during birth and/or have other genes that make it difficult to replace or repair damaged nerve cells when a complication occurs. The theory proposes that such people will sometimes acquire subtle neurological injuries that are not immediately obvious during childhood. However, as the child enters adolescence, these subtle injuries somehow disrupt the normal changes in brain connectivity that occur in all teenagers. The end result is that the affected person becomes particularly sensitive to developing psychosis in the presence of some of the environmental risks (for example, cannabis use) described above. There is evidence to support the neurodevelopmental hypothesis, for example, some people who develop schizophrenia have unusual personality traits (schizotypy) (Nelson et al., 2013), minor developmental delays (Jaaskelainen et al., 2008; Welham et al., 2009) and subtle neurological signs (Neelam et al., 2011). On the other hand, the theory is too broad to be easily proven; no specific neurological injury has been pinpointed (although brain scans of some people who develop schizophrenia show a range of abnormalities); and not all people who develop schizophrenia have the signs described above. Moreover the theory does not readily explain the contribution of several known psychosocial risks, such as urbanicity or migration.

An alternative theory is that everyone carries some degree of vulnerability to developing psychosis and schizophrenia and that the critical factor in many people is not genes or subtle neurological injuries, but the timing, nature and degree of exposure to environmental risks (van Os et al., 2009). Proponents of this theory point to numerous studies illustrating that risks like urban living, poverty and child abuse are highly predictive of later psychotic symptoms with or without a genetic risk being present (Read et al., 2005). Perhaps psychological trauma in the early stages of development can set up psychological vulnerabilities that can lead to psychosis in later life in the face other environmental risks (van Os et al., 2010). In favour of this theory is the discovery that isolated psychotic symptoms are common in the general population, and that psychotic symptoms often emerge against a background of more common symptoms such as depression and anxiety (Evins et al., 2005; Freeman & Garety, 2003; Krabbendam & van Os, 2005; Wigman et al., 2012).

Another theory is often described as ‘the dopamine hypothesis’, which proposes that psychosis and schizophrenia might be caused by over activity in the dopamine neurotransmitter system in the mesolimbic system of the brain (Kapur & Mamo, 2003). The main evidence to support this theory is that effective drug treatment for psychosis and schizophrenia regulates the dopaminergic neurotransmitter system. However, a distinction must be made between the established pharmacological action of antipsychotic drugs (which block dopamine receptors), and the hypothesis that schizophrenia is caused by excessive activity of dopaminergic neurones, for which the evidence is not clear-cut. For example, it could be that antipsychotic drugs cause a general neurological suppression that reduces the intensity of symptoms (Moncrieff, 2009).

Theories have also been put forward to explain how psychological factors may lead to the development of psychotic symptoms. Psychological factors can be divided into problems with basic cognitive functions, such as learning, attention, memory or planning, and biases in emotional and reasoning processes. Problems in basic cognitive functions are related to research in brain structure and function, while problems with emotional and reasoning processes may be linked to social factors. Both types of psychological factor have been implicated in the development of symptoms of psychosis and schizophrenia (Garety et al., 2007; Garety et al., 2001; Gray et al., 1991; Green, 1992; Hemsley, 1993). Hence studies of psychological factors can provide a link between biological and environmental risk factors (van Os et al., 2010).

On balance it is unlikely that any of these theories fully captures the complexity of the potential gene-environment interaction that underpins the development of psychosis and schizophrenia; see (van Os et al., 2010) for a detailed review of the potential complexity of these interactions.

2.2. ASSESSMENT, ENGAGEMENT, CONSENT AND THE THERAPEUTIC ALLIANCE

Assessment involves gathering information about current symptoms, the effects of these symptoms on the individual (and their families and carers) and strategies the person has developed to cope with them. Assessment provides an opportunity to thoroughly examine the biological, psychological and social factors that may have contributed to the onset of the illness, and also enquire about common coexisting problems such as substance misuse, anxiety, depression and physical health problems.

Assessments are carried out for a number of reasons primarily to establish a diagnosis, as a means of screening (for example, for risk), to measure severity and change and as the basis for a psychological formulation. Psychological formulations provide an explanation of why a problem has occurred and what is maintaining it; they also guide the intervention and predict potential difficulties that might arise. The significant factors within the formulation will be underpinned by the theoretical persuasion of the practitioner, including cognitive behavioural, systemic or psychodynamic. A formulation is a hypothesis, based on the information that is available at the time and will often be developed or change during the course of the intervention. Although set in the context of a theoretical model, the formulation is individualised based on the unique life experiences of each person. The individual with psychosis or schizophrenia may not share professionals’ view of what the main problem is. Seeking out and assisting with what the individual regards as the main problem can provide a route towards establishing common ground, which may help to establish trust and collaboration and allow collaborative care planning over time.

The development of a constructive therapeutic relationship is crucial to assessing and understanding the nature of a person’s problems and provides the foundation of any subsequent management plan. Engaging effectively with an individual with psychosis or schizophrenia may require persistence, flexibility, reliability, consistency and sensitivity to the individual’s perspective in order to establish trust. Involving carers, relatives and friends of individuals with psychosis, and acknowledging their views and needs, is also important in the process of assessment and engagement, and in the long-term delivery of interventions (Kuipers & Bebbington, 1990; Worthington et al., 2013).

At times people with acute psychosis may be intensely distressed, fearful, suspicious and agitated or angry as psychotic symptoms can have a profound effect on a person’s judgment and their capacity to understand their situation. They may present a risk to themselves or others that justifies compulsory treatment or detention. Issues of consent remain important throughout the care pathway and professionals need to be fully aware of all appropriate legislation, particularly the Mental Health Act (HMSO; Sartorius, 2002) and the Mental Capacity Act (HMSO). All reasonable steps need to be taken to engage individuals in meaningful discussion about issues relating to consent, and discussion with individuals should include specific work around relapse signatures, crisis plans, advance statements and advance decisions. The above statutory framework does provide for individuals with schizophrenia to make a contemporaneous decision to refuse treatment, though this could potentially be overruled by detention under the Mental Health Act.

In 2011–12, 48,631 individuals in England were compulsorily detained in hospital under Mental Health Act provisions, showing a continuation of the increasing trend in recent years (Care Quality Commission, 2012). There was also a 10% rise in the number of inpatients made subject to community treatment orders (CTOs) to 4,220. The CQC report identified concerns regarding inappropriate coercion in the system. The awareness among individuals who have a psychotic disorder, their carers, professionals and the general population that compulsory detention and treatment is a possibility forms a key component in the mental health landscape, which is variously seen as coercive, oppressive, enabling or protective. Therefore it is essential that any individual detained under the Mental Health Act continues to be involved in a collaborative approach to their difficulties. Seeking common objectives is a vital part of this process and individuals subject to the provisions of the Mental Health Act need the highest quality of care from the most experienced and trained staff, including consultant psychiatrists.

2.3. LANGUAGE AND STIGMA

Although treatment for psychosis and schizophrenia has improved since the 1950s and 1960s, some people with this diagnosis still encounter difficulties finding employment and may feel excluded from society. In an editorial for the British Medical Journal, Norman Sartorius claimed that ‘stigma remains the main obstacle to a better life for the many hundreds of millions of people suffering from mental disorders’ (Sartorius, 2002). In part because of media coverage of events associated with psychosis and schizophrenia, people with the condition live with the stigma of an illness often seen as dangerous and best dealt with away from the rest of society. In this regard, research has shown that while the number of psychiatrically unrelated homicides rose between 1957 and 1995, homicides by people sent for psychiatric treatment did not, suggesting that the public fear of violence arising from people with schizophrenia is misplaced (Taylor & Gunn, 1999).

Those with psychosis and schizophrenia may also feel stigmatised because of mental health legislation, including compulsory treatment in the community, which may exacerbate their feelings of exclusion. The side effects of the medication, such as hypersalivation, involuntary movements, sedation and severe weight gain, and the less than careful use of diagnostic labels, can all contribute to singling out people with schizophrenia, marking them as different. In addition, people with this condition may find that any physical health problems they have are not taken as seriously by healthcare professionals.

In the view of many service users, clinical language is not always used in a helpful way, and may contribute to the stigma of psychosis and schizophrenia. For example, calling someone a ‘schizophrenic’ or a ‘psychotic’ gives the impression that the person has been wholly taken over by an illness, such that no recognisable or civilised person remains. Many non-psychiatric health workers and many employers continue to approach people with psychotic disorders in this way. There is a move away from using the word ‘schizophrenia’ for people with psychotic symptoms because the label is so unhelpful, especially in early intervention in psychosis services.

It is important that professionals are careful and considerate, but also clear and thorough in their use of clinical language and in the explanations they provide, not only to service users and carers but also to other healthcare professionals. Services should also ensure that all clinicians are skilled in working with people from diverse linguistic and ethnic backgrounds, and have a process by which they can assess cultural influences and address cumulative inequalities through their routine clinical practice (Bhui et al., 2007). Addressing organisational aspects of cultural competence and capability is necessary alongside individual practice improvements.

Parents of people with psychosis and schizophrenia often feel to blame, either because they believe that they have ‘passed on the genes’ causing schizophrenia, or because they are ‘bad parents’. However, the families of people with schizophrenia often play an essential part in the treatment and care of their relative, and with the right support and help can positively contribute to promoting recovery. The caring role can come at a high cost of depression and strain, and services need to remain sensitive to the separate needs of carers (see Section 2.4).

2.4. ISSUES FOR FAMILIES, CARERS AND FRIENDS

This guideline uses the term ‘carer’ to apply to all people who provide or intends to provide unpaid care or support for the person, including family members, friends and advocates, although some family members may choose not to be carers.

Many people with psychosis and schizophrenia receive significant support from carers and it is important to understand, therefore, that the caring role brings with it many difficult challenges for which they may not be prepared. Carers may often be important in the process of assessment and engagement in treatment and also in the successful delivery of effective interventions and therapies for people with psychotic disorders. As a result developing and sustaining supportive relationships with carers may be instrumental for recovery from psychosis and schizophrenia.

Carers will need detailed information about psychosis and schizophrenia and, with consent1, will need guidance on their involvement in the person’s treatment and care. In such roles carers have rights and entitlements and these are described by the NHS in England2. Carers can be engaged in the care planning process by practitioners drawing on good practice examples such as the ‘Triangle of Care’ (Kuipers & Bebbington, 1990; Worthington et al., 2013)

Caring for a person with psychosis or schizophrenia can be emotionally, psychologically and financially challenging, therefore carers will need help and support not only in their caring role but also for their own wellbeing because they may experience grief, fear, distress and isolation, and these feelings can have a significant impact on their quality of life. Without this support carers can feel neglected by health and social care services in terms of their own health and support needs and become frustrated by the lack of opportunities to contribute to the development of the care plan for the person for whom they care.

2.5. TREATMENT AND MANAGEMENT OF PSYCHOSIS AND SCHIZOPHRENIA IN THE NHS

2.5.1. Introduction

From the 1850s to the 1950s, the treatment and management of psychosis and schizophrenia generally took place in large asylums where many people remained confined for much of their lives. Subsequently, the development of the post-war welfare state, which made benefits and housing more readily available in the community, the introduction of antipsychotic drugs and increased concern with the human rights of people with mental health problems have supported a government policy of gradual closure of most asylums (Killaspy, 2006). Similar deinstitutionalisation processes have taken place at varying rates in the USA and most European countries, often aimed both at improving people’s quality of life and reducing costs.

2.5.2. Pharmacological treatment

Today, within both hospital and community settings, antipsychotic drugs remain the primary treatment for psychosis and schizophrenia. There is well-established evidence for their efficacy in both the treatment of acute psychotic episodes and relapse prevention over time (Horst et al., 2005). However, despite this, considerable problems remain. A significant proportion of service users – up to 40%(Kelly et al., 2008; Sacco et al., 2009) – have a poor response to conventional antipsychotic drugs and continue to show moderate to severe psychotic symptoms (both positive and negative).

In addition, conventional or typical antipsychotic agents (more recently called ‘first-generation’ antipsychotics [FGAs]) are associated with a high incidence and broad range of side effects including lethargy, sedation, weight gain and sexual dysfunction. Movement disorders, such as parkinsonism, akathisia and dystonia (often referred to as acute extrapyramidal side effects [EPS]), are common and can be disabling and distressing. A serious long-term side effect is tardive dyskinesia, which develops in around 20% of people receiving FGAs (Weinberger et al., 2008); this is a late-onset EPS characterised by abnormal involuntary movements of the lips, jaw, tongue and facial muscles, and sometimes the limbs and trunk. Although a person who develops tardive dyskinesia is usually unaware of the movements, they are clearly noticed by others, and the condition has long been recognised as a severe social handicap (Williams et al., 2012b).

In response to the limited effectiveness and extensive side effects of FGAs, considerable effort has gone into developing pharmacological treatments for schizophrenia that are more effective and produce fewer or less disabling side effects. The main advantage of these so-called second-generation (‘atypical’) antipsychotics (SGAs) appears to be that they have a lower liability for acute EPS and tardive dyskinesia. However, in practice this must be balanced against other side effects, such as weight gain and other metabolic problems that may increase the risk of type-2 diabetes and CVD (Lindenmayer et al., 2003; Mackin et al., 2007a; Marder et al., 1996; Nasrallah, 2003; Nasrallah, 2008; Suvisaari et al., 2007). There have been several recent suggestions that the distinction between FGAs and SGAs is artificial (Kendall, 2011; Leucht et al., 2013).

Raised serum prolactin is also an important adverse effect of antipsychotic medication, which can lead to problems such as menstrual abnormalities, galactorrhea and sexual dysfunction, and in the longer term to reduced bone mineral density (Haddad & Wieck, 2004; Meaney et al., 2004).

In people with schizophrenia who have not responded well to other antipsychotics, only one antipsychotic drug, clozapine, has a specific licence for the treatment of this group of people.

There is emerging evidence that some people can cope well in the long term without antipsychotic medication (Harrow et al., 2012), and some suggestions that both neurocognitive and social functioning may be improved without such medication (Faber et al., 2012; Wunderink et al., 2013); in addition, there is preliminary evidence that psychological interventions can be beneficial without antipsychotic medication (Morrison et al., 2012b). Such considerations have led some to question the default reliance on medication as first-line treatment for people with schizophrenia (Morrison et al., 2012a). Nevertheless, it is widely accepted that antipsychotics remain an essential component and not the mainstay of treatment (Kendall 2011).

2.5.3. Psychological and psychosocial interventions

Before the introduction of neuroleptic medication for schizophrenia in the 1950s and 1960s, analytical psychotherapies based on the work of Frieda Fromm-Reichmann (1950) and Harry Stack Sullivan (1947) and others were widely practiced. The concept of rehabilitation grew during this period influenced by the pioneering work of Manfred Bleuler in the Bergholzi clinic in Zurich where patients were engaged in meaningful vocational and occupational endeavour in the context of an ‘open door’ policy (Bleuler, 1978). In the early 1980s, the publication of the seminal ‘Chestnut Lodge’ evaluation of exploratory and investigative psychotherapies (McGlashan, 1984) had a major impact: the trial demonstrated no impact of psychotherapy on the core psychotic symptoms contributing to a decline in their use in routine practice with neuroleptics taking their place as the mainstay of treatment.

However, as deinstitutionalisation gained ground in the 1970s, psychological and social research into factors that might contribute to relapse in people with psychosis or schizophrenia living in community settings, such as stressful life events and communication difficulties in families (high ‘expressed emotion’), stimulated the development of family intervention to prevent relapse (Leff et al., 1982; Lobban & Barrowclough, 2009). Family intervention often included education for family members about schizophrenia (sometimes called ‘psychoeducation’) and, in time, research was conducted on the benefits of psychoeducation alone (Birchwood et al., 1992).

Interest in psychological and broader psychosocial interventions for the treatment of psychosis and schizophrenia was also precipitated in the 1980s by the increasing recognition of the limitations, side effects and health risks associated with antipsychotic medication and low rates of adherence (Akbarpour et al., 2010) and growing evidence for the impact of cumulative neuroleptic exposure on cortical grey matter loss (Baker et al., 2006).

Over the last decade, there has been a revolution in understanding the role that ecological and psychological processes have on the risk for psychosis and on resilience (Bloch et al., 2010). This includes, for example, the impact of urban upbringing and residence in unstable, fragmented neighbourhoods (Chen et al., 2013) and the impact that low self-esteem can have on the way in which individuals with psychotic experience appraise its meaning.

Demand for psychological therapies in general has also grown, culminating in the Department of Health’s Improving Access to Psychological Therapies (IAPT) initiative; indeed, in the mental health strategy, No Health Without Mental Health (Prince et al., 2007), funding has been made available to extend IAPT to those with severe mental illness, particularly psychosis and schizophrenia.

Cognitive-developmental processes in psychosis

The familiar notion that the onset of psychosis coincides with the ‘first psychotic episode’ is now understood to be something of a misnomer; it is, in reality, the ‘end of the beginning’. With few exceptions, the formal onset of psychosis is preceded by many months of untreated psychosis and before that, many years of changes stretching back into late childhood. Important prospective studies, particularly the ‘Dunedin Study’(Dalack & Meador-Woodruff, 1999), have shown that subtle psychotic-like experiences at age 11 strongly predict the later emergence of psychosis; however many individuals manage to escape this outcome. Population studies such as the NEMESIS project (de Leon et al., 2005) and the UK AESOP study (Chen et al., 2013) have shown that a number of ‘environmental’ factors predict those who are more likely to show persistence and worsening of symptoms, including: cannabis exposure in adolescence, social deprivation, absence of a parent and the experience of childhood abuse or neglect. Affective dysregulation has been shown to be a dimension that is both highly comorbid with psychosis (now argued to be a dimension of psychosis) and a strong feature in its early development (Evins et al., 2005); the presence of affective dysfunction in adolescence, particularly depression and social anxiety, has been shown to be a predictor of transition from psychotic experience to psychotic disorder (Bloch et al., 2010).

Social disability is one of the hallmarks of psychosis and those with adolescent onset tend to fare worse in this regard. Prospective studies of social disability and recovery have shown that early functional and vocational recovery, rather than symptoms of psychosis, play a pivotal role in preventing the development of chronic negative symptoms and disability, underlining the need for interventions that specifically address early psychosocial recovery (Fatemi et al., 2005).

These cognitive-developmental processes have informed influential cognitive models of psychosis (Gallagher et al., 2007) and specific symptoms of psychosis such as auditory hallucinations (Gelkopf et al., 2012; George et al., 2008) and affective processes (George et al., 2000). These models have informed wider foci of interventions in psychosis in addition to psychotic symptoms, embracing the family, developmental trauma and their adult sequelae, affective dysfunction, substance misuse and peer social engagement.

Aims of psychological and psychosocial interventions

The aims of psychological and psychosocial interventions in psychosis and schizophrenia are therefore numerous. These should include interventions to improve symptoms but also those that address vulnerability, which are embedded in developmental processes. The aims, therefore, include: reduction of distress associated with psychosis symptoms (Hartman et al., 1991); promoting social and educational recovery; reducing depression and social anxiety (Hong et al., 2011); and relapse prevention. Reducing vulnerability and promoting resilience will require reducing cannabis misuse, promoting social stability and family support, and dealing with the sequelae of abuse and neglect including attachment formation.

2.5.4. Management of at risk mental states and early psychotic symptoms

Reliable and valid criteria are now available to identify help-seeking individuals in diverse settings who are at high risk of imminently developing schizophrenia and related psychoses. Yung and colleagues (Yung et al., 1996) developed operational criteria to identify three subgroups possessing an at risk mental state for psychosis. Two subgroups specify state risk factors, defined by the presence of either transient psychotic symptoms, also called brief limited intermittent psychotic symptoms, or attenuated (subclinical) psychotic symptoms. The other subgroup comprises trait-plus-state risk factors, operationally defined by the presence of diminished functioning plus either a first-degree relative with a history of psychosis or a pre-existing schizotypal personality disorder. All subgroups are within a specified age range known to be at greatest risk for the onset of psychosis.

Effective interventions to prevent or delay transition to psychosis are needed because of the significant personal, social and financial costs associated with it. To date there have been six randomised controlled trials (RCTs) that have reported outcomes associated with antipsychotic medication, omega-3 polyunsaturated fatty acids and/or psychological interventions, each using similar operational definitions of at risk mental states. These studies have been conducted in Australia (McGorry et al., 2002; Yung et al., 2011), North America (Addington et al., 2011; McGlashan et al., 2006); the UK (Morrison et al., 2007; Morrison et al., 2004) and Austria (Amminger et al., 2010).

It is generally agreed that research regarding interventions for at risk mental states and subthreshold psychotic experiences is in a state of clinical equipoise. Existing recommendations promote a clinical staging approach that utilises benign interventions (such as monitoring mental states, case management, social support and psychosocial interventions) before considering those with more significant side effects, such as antipsychotic medication, or restrictive approaches involving hospitalisation (International Early Psychosis Association Writing Group, 2005; McGorry et al., 2006). However, due to local resources and service configurations, clinicians’ attitudes and awareness of such recommendations, current clinical practice is likely to be highly variable, which is evident in the recent large international naturalistic cohort studies (Cannon et al., 2008; Ruhrmann et al., 2010).

2.5.5. Service-level interventions

Service-level interventions for people with psychosis and schizophrenia are delivered both in hospital and in community settings. The ‘balanced care’ model of mental health service provision (Thornicroft & Tansella, 2012) emphasises the importance of achieving an equilibrium among all service components including outpatient services and community mental health teams, acute inpatient services, community residential care and services for supporting employment.

Despite the policy of shifting care to the community, expenditure on inpatient care remains substantial: secure units, community mental health teams and acute wards are the top three sources of mental health expenditure in the NHS (Nayor & Bell, 2010). As the large asylums closed, government policy promoted the opening of acute psychiatric units within general hospitals. Some such units remain, but recently the separation of mental health provider trusts from physical health services, together with disappointment with the extent to which mental healthcare in the general hospital has reduced stigma, has resulted in a trend towards small freestanding mental health inpatient units, usually within or close to the catchment areas they serve (Totman et al., 2010). Both service users and clinicians have argued that general acute admission wards are often unsafe environments with limited provision of therapeutic interventions and activities (Holloway & Lloyd, 2011). In response, there has been a series of initiatives aimed at improving the quality and effectiveness of inpatient care, including the Accreditation for Acute Inpatient Mental Health Services (AIMS) programme initiated by the Royal College of Psychiatrists (Cresswell & Lelliott, 2009) and STAR WARDS (Simpson & Janner, 2010).

Beyond the acute admission ward, there has been interest for many decades in whether residential crisis houses outside hospital can provide effective and acceptable alternatives to hospital admission for some people who have severe mental illness. Service users and voluntary sector organisations have strongly advocated them. They are available in a minority of trusts and are often closely connected to crisis resolution and home treatment teams (Johnson et al., 2010). While numbers of acute beds have fallen, secure bed use for longer term admission of people deemed too dangerous for local psychiatric units has increased (Walker et al., 2012). This trend, together with a rise in supported housing and in detentions under the Mental Health Act, has led some to argue that a reinstitutionalisation process is in progress (Priebe et al., 2005).

The lynchpin of community mental healthcare for people with a psychotic disorder in the past 2 decades has been the multidisciplinary community mental health team, providing assessment and long-term follow-up. Mandated by the NHS Plan (2000), a strikingly extensive national initiative has been the introduction in every catchment area in England of three types of specialist community mental health teams: (1) crisis resolution and home treatment teams provide urgent assessment when hospital admission is contemplated and, where feasible, offer intensive home treatment as an alternative (Johnson et al., 2008); (2) assertive outreach (assertive community treatment) teams work intensively with people who are most difficult to engage (Wright et al., 2003); and (3) early intervention in psychosis services seek to reduce treatment delays at the onset of psychosis and to promote recovery and reduce relapse following a first episode of psychosis (Lester et al., 2009a). With a new government in 2010 and a shift towards focusing on outcomes rather than requiring certain service configurations, these new team types are no longer mandatory, but they remain important components of service systems in most local areas. In some regions, generic community mental health teams are now giving way to further types of specialist service, including primary care liaison teams and specialist teams for psychosis. In recent innovations, there has been a further focus on the development of integrated pathways through services: for example, in some catchment areas integrated acute care pathways closely integrate inpatient wards, crisis teams, crisis houses and acute day services, with a single management structure and sometimes staff rotation between services. Rehabilitation services, often consisting of inpatient, residential and community team components, are a longstanding resource for people with psychosis and schizophrenia in many areas, focusing on people with treatment-resistant symptoms and severe difficulties in functioning (Killaspy et al., 2013).

A great variety of services aim to meet the social needs of people with psychosis and schizophrenia. Recent emphasis has been on developing services that support people in achieving their own self-defined recovery goals. As the National Institute for Mental Health in England (NIMHE) stated: ‘Recovery is what people experience themselves as they become empowered to manage their lives in a manner that allows them to achieve a fulfilling, meaningful life and a contributing positive sense of belonging in their communities’ (National Institute for Mental Health in England, 2005). The social disadvantages experienced by people with severe mental illness, including stigma, social exclusion and poverty, are still great, therefore high levels of need in domains such as accommodation, work, occupational, educational and social activities, and social support remain unaddressed (Thornicroft et al., 2004). A complex range of supported accommodation, varying in quality, support level and approach, is delivered primarily by the voluntary and private sectors (Macpherson et al., 2012). Employment rates among people with severe mental illness are notably low in the UK, and a range of services, including individual placement and support schemes (Rinaldi et al., 2010) and social firms (which seek to create jobs for people who are disadvantaged in the labour market) have sought to address this. Social support and non-vocational activities have traditionally been the province of local authority day centres. These have sometimes been criticised as excessively institutional, and have been supplemented or replaced by a wider range of initiatives aimed at improving access to meaningful activities, enhancing personal relationships, reducing stigma and discrimination, and lessening the negative effects of social isolation. Many such innovative services are provided by the voluntary sector, but relatively little evidence on activities and outcomes is available as yet. See Section 2.5.6 for further discussion about employment for people with psychosis and schizophrenia.

2.5.6. Employment

When people have a job that gives them purpose, structure and a valued role in society this impacts positively on their self-esteem, community inclusion and opportunities (Ross, 2008) as well as having a financial reward, although there are many positive benefits to unpaid work. Conversely, unemployment limits life chances and has a detrimental impact on physical health, social networks and choice (Advisory Conciliation and Arbitration Service, 2009).

Rates of unemployment for people with severe mental illness are approximately six to seven times higher than people with no mental disorder (Organisation for Economic Co-operation and Development, 2011). Different studies put the employment rate of people with severe mental illness in a range of between 15% (Evans & Repper, 2000) to 20% (Schneider et al., 2007), and they are the largest group claiming incapacity benefit (Ross, 2008).

For people with a severe mental illness, the best predictor for a positive outcome towards an employment goal is the service user wanting to have a work role (Ross, 2008) and a work history (Michon et al., 2005), rather than the diagnosis or symptoms. Having unmet needs and not receiving incapacity benefit or income support was associated with wanting to work full-time (as opposed to part time) rather than self-esteem, quality of life, severity of symptoms or level of functioning (Rice et al., 2009).

The stress-vulnerability model can lead to the view that work could be detrimental to people with psychosis and schizophrenia because it could be stressful (Zubin & Spring, 1977). But having little structure or role in society, which can lead to social isolation and poverty, are widely recognised as stressors (Marrone & Golowka, 1999) and contributors to poor physical and mental health (Boardman et al., 2003). If health and social care professionals assume that service users do not want to work and suggest that work may be an unreasonable aspiration or too stressful, this will limit the views of the service user. Low expectations of mental health staff can be a major barrier to service users finding employment (Office of the Deputy Prime Minister, 2004). There is evidence that up to 97.5% of service users may want some type of work role, be that volunteering or paid employment, but when asked if they had any help with seeking work, 53% had not received any support with this goal (Seebohm & Secker, 2005).

Stigma and discrimination is experienced by people with psychosis and schizophrenia from employers, with 75% of employers stating that it would be difficult to employ a person with a psychotic disorder (Office of the Deputy Prime Minister, 2004). Some employers believe that workers with mental health problems cannot be trusted and cannot work with the public and that work would be negative to their mental health. Larger employers are more likely to employ people with psychosis and schizophrenia, perhaps because they have wider support structures (Biggs et al., 2010). Service users identified the attitude of employers as the biggest barrier to work (Seebohm & Secker, 2005). However, the attitude of employment agencies has improved and they were able to identify the advantages of employment for service users (Biggs et al., 2010).

Other barriers to employment identified by service users with mental health problems are the benefits system and having a lack of work experience, skills and qualifications (Seebohm & Secker, 2005). One key determinant that can limit employment outcomes is the level of educational attainment. Experiencing disruption to education as a direct result of mental health problems can impact on access to the labour market and can make it difficult to attain and sustain a work role (Organisation for Economic Co-operation and Development, 2011; Schneider et al., 2009). Even for healthy young people there is evidence for long-term negative effects on their work prospects when, having completed their education, they are unable to access the labour market during a recession; this can lead to subsequent anxiety about job security because past unemployment will influence future expectations and limit lifetime earnings (Bell & Blanchflower, 2011). Therefore, when a young person’s future is compounded further by poor mental health, they require exceptional support and guidance to achieve their occupational aspirations and mental health workers need to be active in challenging the barriers that may be inherent within the system for service users to achieve their full potential.

2.5.7. Inequalities

The Equality Act identifies the following characteristics that require protection against discrimination in relation to service provision: age, race, religion or belief, gender, sexual orientation, transgender identity, disability and pregnancy and maternity. Marriage or civil partnership relates only to employment. It is important for service providers and mental health workers to be aware of the different needs and outcomes for people with protected characteristics, and how these may affect the way that services and interventions are designed, accessed, delivered and evaluated. As a result of this information, services need to take equality into account in working with individuals or population groups, so that they can demonstrate that people within these characteristics are not disadvantaged in their care and subsequent outcomes and address health inequalities.

Many of the protected characteristics, such as race, age, perinatal mental health and gender, have been covered widely in the literature in relation to psychosis and schizophrenia. The evidence base is non-existent in relation to the population that have protected characteristics relating to sexual orientation, gender reassignment and disability. However, current evidence demonstrates lesbian, gay and bisexual people have a higher prevalence of self-harm, suicidal ideation, substance misuse (Hunt & Fish, 2008) (Stonewall, 2012) and are frequent victims of bullying and hate crime from family members and within society (Dick, 2008) and subsequent psychological trauma (Herek et al., 1999).

2.5.8. Primary and secondary care interface

The last decade has seen much change in how the care of people with psychosis and schizophrenia living in the community is organised between primary and secondary care. Not only has secondary care provision undergone major alteration but there have also been significant changes in primary care provision. A recent 12-month investigation of 1,150 primary care records of people with severe mental illness—the most common diagnoses being schizophrenia (56%) and bipolar disorder (37%)—from 64 practices in England (Reilly et al., 2012) found that per annum about two thirds were seen by a combination of primary and specialist services and a third were seen just in primary care. These findings superficially appeared similar to findings from the largest previous survey (Kendrick et al., 1994). However this new study (Reilly et al., 2012) revealed a marked reduction in this population’s annual general practitioner (GP) consultation rates averaging only 3 (range 2–6) per annum, far lower than the rates of 13 to 14 per annum reported in the mid-1990s (Nazareth & King, 1992), and only slightly higher than the annual consultation rate of the general population at 2.8 (range 2.5–3.2) in 2008 (Hippisley-Cox & Vinogradova, 2009). Moreover practice nurses, key providers of cardiovascular risk screening and health education in primary care, consulted with this population on average only once a year compared with the general practice population rate of 1.8 consultations per year; nor was health education a common feature of these consultations, the authors concluding that practice nurses appear to be an underutilised resource (Reilly et al., 2012). This diminution in contact with a primary care practitioner is perhaps surprising given that in 2006 the Quality and Outcomes Framework (NHS Employers and British Medical Association 2011/12) instituted a pay for performance scheme designed to encourage health promotion and disease management programmes, paying primary care to measure four physical health indicators for people with severe mental illness on the primary care mental illness register: BMI (MH12), blood pressure (MH13), total to HDL cholesterol ratio (MH14) and blood glucose (MH15).

Patients view primary care as providing an important coordinating role for their mental and physical healthcare; they particularly value a stable continuity of doctor–patient relationship in primary care (Lester et al., 2005). In contrast GPs report feeling that the holistic care of people with severe mental illness is beyond their remit (Lester et al., 2005); some may hold negative opinions about providing care for this population (Curtis et al., 2012; Lawrie et al., 1998); and the majority regard themselves as simply involved in the monitoring and treatment of physical illness and prescribing for mental illness (Bindman et al., 1997; Kendrick et al., 1994).

Detection and referral of psychosis

The pathway to effective assessment and treatment for someone with a newly presenting psychotic illness is an important aspect of the primary–secondary interface. Rarity of presentation of psychotic disorders in primary care can impede early detection, highlighted by a Swiss study that found that GPs suspect an emerging psychosis in only 1.4 patients per year (Simon et al., 2005). Yet GP involvement is linked with fewer legal detentions and can reduce distress (Burnett et al., 1999; Cole et al., 1995). However, few GPs receive postgraduate mental health training, and even when they do a well-powered study of a GP educational intervention about early presentations of psychosis failed to reduce treatment delay, although the training may have facilitated access to specialist early intervention teams (Lester et al., 2009b). When asked, GPs prefer greater collaboration with specialist services and low-threshold referral services rather than educational programmes (Simon et al., 2005).

Coordination of physical healthcare

The other major interface issue concerns the management of physical health. A Scottish primary care study confirmed the high rates of multiple comorbid physical health problems experienced by people with schizophrenia, and that the likelihood of comorbidity was almost doubled for those living in the most deprived areas (Langan et al., 2013). There is evidence from studies in the general population that the extent of comorbidity is greater in younger age groups, even though there is increasing morbidity with age (van den Akker et al., 1998). This is particularly pertinent for people experiencing schizophrenia, where young onset and social disadvantage are both likely.

Cardiovascular disease (CVD) is the single commonest cause of premature mortality in people with psychosis and schizophrenia and yet, despite numerous published screening recommendations in this guideline and other reports (Buckley et al., 2005; Mackin et al., 2007b; Morrato et al., 2009; Nasrallah et al., 2006), there continues to be systematic under-recognition and under-treatment in primary care (Smith et al., 2013). Recognition and treatment of CVD risk was one of the themes investigated by the recent National Audit of Schizophrenia (Royal College of Psychiatrists, 2012) using standards derived from the 2009 guideline (NICE, 2009d). In the largest audit of its kind yet undertaken, 94% of the trusts and health boards across England and Wales took part, returning data between February and June 2011 on 5,091 patients with an average age of 45 years. This case record audit reviewed the care of people with a diagnosis of either schizophrenia or schizoaffective disorder in contact with community-based mental health services in the previous 12 months. Only 29% had record of a comprehensive assessment of cardiovascular risk, including weight (or BMI), smoking status, blood glucose, blood lipid levels and blood pressure; 43% appeared not to have been weighed and 52% had information about family history of CVD, diabetes, hypertension or hyperlipidaemia during the previous 12 months. Of those with an established comorbidity of either CVD or diabetes mellitus, fewer than half had record of a comprehensive assessment of cardiovascular risk. Even where monitoring had identified a problem, an intervention did not necessarily occur – for instance only 20.1% of those identified to have a lipid abnormality appear to have been offered an intervention.

Perhaps because poor physical health may take several years to fully develop in people with psychosis and schizophrenia, there has been a tendency for most guidance and recommendations to focus on treating the endpoints of disease. Yet modifiable cardiovascular risk appears within weeks of commencing treatment (Foley & Morley, 2011). New models are, however, emerging. For instance, the potential for nurse-led approaches to cardiovascular risk screening has attracted interest. A recent study designed to complement the configuration of UK primary and secondary care services placed a general nurse, experienced in cardiovascular risk assessment but without previous mental health experience, within four community mental health teams; the nurse-led intervention was superior, resulting in an absolute increase of approximately 30% more people with serious mental illness receiving screening for each CVD risk factor than in control arm of the study (Osborn et al., 2010a). Another model, recently introduced in New South Wales is encouraging a systematic approach by specialist services for people with first episode psychosis based on an agreed clinical algorithm focusing on key cardiovascular risks – notably weight gain, smoking, lipid and glucose abnormalities, hypertension, awareness of family history of CVD or diabetes (Curtis et al., 2012). This resource has recently been adapted for use in the UK by the Royal College of General Practitioners and the Royal College of Psychiatrists as part of the National Audit of Schizophrenia initiative; the Positive Cardiometabolic Health Resource (Lester UK adaptation, 2012) encourages a collaborative framework between primary and specialist care for dealing with the cardiometabolic risks linked to prescribing antipsychotic medicines.

While such examples of innovation and collaboration between professionals from primary and specialist care are encouraging, there remains little systematic evaluation of ways to better address multiple physical health morbidities in people with psychosis and schizophrenia.

2.6. ECONOMIC COST

Schizophrenia is one of the main contributors to global disease burden (Collins et al., 2011), having a significant impact on individuals and placing heavy responsibility on their carers, as well as potentially large demands on the healthcare system. In the most recent ‘Global Burden of Disease’ analysis by Murray and colleagues (2012) schizophrenia appeared among the top 20 causes of disability in many regions and was ranked as the 16th leading cause of disability among all diseases worldwide. When the burden of premature mortality and non-fatal health outcomes were combined and expressed in disability adjusted life years (DALYs), schizophrenia was the 43rd leading cause of worldwide burden among all diseases and from 1990 to 2010 there was a 43.6% increase in DALYs attributable to schizophrenia worldwide. Similarly, in the UK sub-analysis of the ‘Global Burden of Disease’ study Murray and colleagues (2013) found schizophrenia to be one of the leading causes of years lived with disability (YLDs) with approximately 15% increase in YLDs and 14% increase in DALYs from 1990 to 2010.

In England schizophrenia is estimated to cost £7.9 billion (in 2011/2012 prices) (Mangalore & Knapp, 2007). Of this, roughly £2.4 billion (about 30% of the total cost) comprise direct costs of treatment and care falling on the public purse, while the remaining £5.6 billion (70% of the total cost) constitute indirect costs to society. The cost of lost productivity of people with schizophrenia owing to unemployment, absence from work and premature mortality reach £4.0 billion, while the cost of lost productivity of carers is £38.0 million. The cost of informal care and private expenditures borne by families, account for approximately £729.4 million. In addition, £1.2 million of the total cost can be attributed to criminal justice system services, £676.0 million to benefit payments and another £16.6 million to the administration of these payments. Based on the above estimates, the average annual cost of a person with schizophrenia in England is approximately £65,000.

Davies and Drummond (1994) estimated that the lifetime total direct and indirect costs of a person with schizophrenia ranged from £8,000 (for a person with a single episode of schizophrenia) to £535,000 (for a person with multiple episodes lasting more than 2.5 years, requiring long-term care either in hospital or intensive community programmes) in 1990/1991 prices. Guest and Cookson (1999) estimated the average costs of a newly diagnosed person with schizophrenia at around £115,000 over the first 5 years following diagnosis, or approximately £23,000 annually (1997 prices). Of these, 49% were indirect costs owing to lost productivity.

Schizophrenia has been shown to place a substantial economic burden to the healthcare system and society worldwide: Wu and colleagues (2005) reported a total cost of schizophrenia in the US of US$62.7 billion (2002 prices). More than 50% of this cost was attributed to productivity losses, caused by unemployment, reduced workplace productivity, premature mortality from suicide and family caregiving; another 36% was associated with direct healthcare service use and the remaining 12% was incurred by other non-healthcare services. In Canada, Goeree and colleagues (2005) estimated the total cost of schizophrenia at approximately CA$2.02 billion (2002 prices). Again, productivity losses were by far the main component of this cost (70% of the total cost). In Australia, the total societal cost associated with schizophrenia reached AU$1.44 billion in 1997/1998 prices, with roughly 60% relating to indirect costs (Carr et al., 2003). Finally, several national studies conducted in Europe in the 1990s showed that schizophrenia was associated with significant and long-lasting health, social and financial implications, not only for people with schizophrenia but also for their families, other caregivers and the wider society (Knapp et al., 2004).

The use of hospital inpatient care by people with psychosis and schizophrenia is substantial. In the financial year 2011–2012, 29,172 admissions were reported for schizophrenia and related disorders in England, resulting in over 2.8 million inpatient bed days. Moreover, there were approximately 56,000 outpatient attendances and 2,700 teleconsultations related to the management of schizophrenia and other psychotic disorders (The Health and Social Care Information Centre, 2012). Inpatient care is by far the most costly healthcare component in the overall treatment of schizophrenia. Kavanagh and colleagues (1995) found that care in short- or long-stay psychiatric hospitals accounted for 51% of the total public expenditure on care for people with schizophrenia. Lang and colleagues (1997) reported that provision of inpatient care for people with schizophrenia amounted to 59% of the total cost of health and social care for this population. Similarly Knapp and colleagues (2002) suggested that inpatient care accounted for 56.5% of the total treatment and care costs of schizophrenia, compared with 2.5% for outpatient care and 14.7% for day care. Unemployment is a considerable burden for people with schizophrenia. A rate of employment among people with schizophrenia is reported to be between 15 (Evans & Repper, 2000) and 20% (Schneider et al., 2007) in the UK. Stigmatisation is one of the main barriers to employment for this population. Generally the rates of employment are higher for newly diagnosed people compared with those with established schizophrenia; however, the majority of people presenting to services for the first time are already unemployed (Marwaha & Johnson, 2004). According to Guest and Cookson (1999), between 15 and 30% of people with schizophrenia are unable to work at diagnosis, rising to 67% following a second episode. Overall, the estimates of total indirect costs of people with schizophrenia in the UK range from £412 million for newly diagnosed people over the first 5 years following diagnosis (Guest & Cookson, 1999) to £1.7 billion annually for people with chronic schizophrenia (Davies & Drummond, 1994).

Family members and friends often provide care and support to those with schizophrenia, which places significant burdens on them that impact upon their health, leisure time, employment and financial status. Guest and Cookson (1999) estimated that, in the UK, 1.2 to 2.5% of carers gave up work to care for dependants with schizophrenia.

Measuring the total cost of informal care provided by family members and friends is difficult but it is important to highlight that it is a significant amount. Data on costs of informal care for people with schizophrenia are not available. Based on figures provided by the Office for National Statistics, the Sainsbury Centre for Mental Health (2003) estimated that in 2002/2003 the aggregate value of informal care provided by family members and friends in the UK to those with mental health problems was £3.9 billion.

It is therefore evident that efficient use of available healthcare resources is required to maximise the health benefit for people with schizophrenia and, at the same time, reduce the emotional distress and financial implications to society.

Copyright © National Collaborating Centre for Mental Health, 2014.
Bookshelf ID: NBK333029

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