Definition and redefinition

The term ‘recovery’ appears to have a simple and self-evident meaning, but within the recovery literature it has been variously used to mean an approach, a model, a philosophy, a paradigm, a movement, a vision and, sceptically, a myth (Reference WhitwellWhitwell, 1999). Two main perspectives have generated very different kinds of data. The first focuses on the familiar dimensions of clinical and social recovery, measured objectively through outcome studies and expressed as approximations to cure. The second focuses on the personal and existential dimensions of recovery, taking the form of subjective and self-evaluated accounts of how an individual has learned to accommodate to an illness. These accounts have become the founding stories of the recovery movement (e.g. Reference ChamberlinChamberlin, 1978; Reference LovejoyLovejoy, 1984; Reference DeeganDeegan, 1988, Reference Deegan1996; Reference LeeteLeete, 1989; Reference UnzickerUnzicker, 1989; Reference ClayClay, 1994; Reference ColemanColeman, 1999; Reference RidgewayRidgeway, 2000), and anthologies of these personal stories have been used by governments and professions as a means of combating stigma and reasserting a focus on personal perspectives (Reference LeibrichLeibrich, 1999; Reference Lapsley, Waimarie and BlackLapsley et al, 2002; Reference Ramsay, Page and GoodmanRamsay et al, 2002). For example, Daniel Fisher, as a psychiatrist and co-director of the National Empowerment Centre in the USA, illustrates the power of the personal account through his challenge in the Washington Post, which begins:

The practitioner of evidence-based medicine will also be aware of the dangers of adopting a general theory and expectation based on a single case history.

Reference AnthonyAnthony (1993) is credited with the most widely accepted contemporary definition of recovery. He argues that the person with a mental illness can recover even when the illness is not cured, and that the process of recovery can proceed in the presence of continuing symptoms and disabilities. From this viewpoint ‘wellness’ and ‘illness’ may be considered as independent variables. Thus, recovery involves:

Recovery and cure: the significance of long-term outcome studies

Many authors cite Harding et al's pioneering long-term studies in support of a more optimistic attitude and higher expectations for recovery; in these studies half to two-thirds of patients with severe mental illness, including ‘some very chronic cases’, significantly improved or recovered (Reference Harding, Brooks and AsolagaHarding et al, 1987). The criteria for recovery are impressive: no current medication, working, relating well to family and friends, integrated into community, and behaving in such a way that no one could detect that the individual had ever been hospitalised for any kind of psychiatric problem. However, the applicability of these findings to other clinical settings has been challenged on the grounds of selection bias and the unusual comprehensiveness of the patients’ treatment. An inherent difficulty in interpreting long-term outcome studies is that the ‘outcomes’ can say as much about the sampling of patients admitted to these studies as about the illnesses studied (Reference Harrison and MasonHarrison & Mason, 1993). Reference WarnerWarner's (1994) review of 85 studies over the past 100 years led him to observe that ‘few topics in psychiatry have been researched as frequently, and over as long a period of time, as has recovery from schizophrenia,’ but despite this volume of work, ‘a clear picture of long-term outcome has not emerged’. He attributes this to the limited validity of schizophrenia as a diagnostic entity.

The International Study of Schizophrenia (Reference Harrison, Hopper and CraigHarrison et al, 2001), which is probably the most substantial long-term follow-up study to date, included 1633 participants from 14 culturally diverse areas, studied at 15 years and 25 years after diagnosis. The results were in line with previous studies. Global outcomes at 15 years and 25 years were favourable for over half of all people followed up. There was evidence of a ‘late recovery’ effect, which supported the case for therapeutic optimism and suggested that these findings should ‘join others in relieving patients, carers and clinicians of the chronicity paradigm which dominated thinking throughout much of the 20th century’.

While underlining the need to carefully operationalise the concept of recovery, Harrison et al also comment that studies such as their own, which rely heavily on the absence of symptoms, social disabilities and resource utilisation as outcome indicators, ‘should not be equated with recovery of the level of functioning achieved before onset of illness, and even less with the recovery of lost potential’, and furthermore that ‘recovering a meaningful and fulfilling life within the limitations of the disorder’ is an important judgement that their data do not allow them to make.

It would appear that until these parameters are more adequately accounted for and the core concepts carefully operationalised, estimation of recovery will not be greatly helped by outcome research.

Recovery and the medical model

It is a largely non-medical assertion that medical practice is governed by something called ‘the medical model’, and the largely non-medical recovery literature yields a strong and clear view that psychiatric thought and practice are almost entirely hostage to it. It is often depicted as narrowly focused on disease, treatment and biological reductionism, underwritten by evidence-based medicine, and this is contrasted with the broader, person-centred focus of recovery models (Reference Ralph, Lambert and KidderRalph et al, 2002), which assert the validity of an evidence base largely composed of personal narrative, and the views of ‘experts by experience’. At present, these two perspectives, their values and language, stand in significant tension with one another (Table 1).

Table 1

Differences in concepts, language and values between the recovery and the medical models

Recovery model	Medical model
Distressing experience	Psychopathology
Biography	Pathography
Interest centred on the person	Interest centred on the disorder
Pro-health	Anti-disease
Strengths-based	Treatment-based
Experts by experience	Doctors and patients
Personal meaning	Diagnosis
Understanding	Recognition
Value-centred	(Apparently) value-free
Humanistic	Scientific
Growth and discovery	Treatment
Choice	Compliance
Modelled on heroes	Underpinned by meta-analysis
Guiding narratives	Randomised controlled trials
Transformation	Return to normal
Self-management	Expert care coordinators
Self-control	Bringing under control
Personal responsibility	Professional accountability
Within a social context	Decontextualised

Thus, the recovery literature often characterises psychiatrists as risk averse and wedded to a prescribing, relapse-prevention and maintenance model of care (‘warehousing’), which fosters dependence. Critics further emphasise that time, much time, can pass without benefit. Reference DeeganDeegan (1988) has poignantly recollected that she stood,

The process of recovery

In contrast with emphasising the struggle for cure, Reference DeeganDeegan (1988) defines recovery as ‘a process, a way of life, an attitude, and a way of approaching the day's challenges’. The recovery literature (Reference Ralph, Lambert and KidderRalph et al, 2002; Reference Allott, Loganathan, Fulford, Lurie, McCubbin and DallaireAllot et al, 2003) similarly describes being ‘in recovery’ as a process that involves gaining or regaining many aspects of life that are usually taken for granted and may have been lost or severely compromised by mental illness. Most authors consider that the pivot of recovery is the individual's active and responsible engagement with his or her distress and difficulties. This may involve many steps and stages, and inevitable uncertainty, so that recovery becomes ‘an uncharted, unpredictable, and personal journey’ (Reference SheehanSheehan, 2002).

Recovery is often described as having a defining moment or turning-point (Reference Allott, Loganathan, Fulford, Lurie, McCubbin and DallaireAllott et al, 2003), sometimes a low turning-point (Reference Rakfeldt and StraussRakfeldt & Strauss, 1989), before which the individual felt stuck, perhaps denying the illness because of anxiety or unresolved grief for loss of health and future. It is sometimes claimed that recovery is often further delayed by a state of learned helplessness encouraged by the low expectations of mental health professionals, especially when they remove the individual's responsibility. However, even in circumstances that begin with compulsory admission, there is the possibility of progressive handing back of power and control to the patient, so that choice and self-direction are supported at the earliest opportunity.

The experience of turning towards recovery may come out of the blue, but is more often described as arising from talking to others, particularly to other service users rather than professionals. It is experienced as regaining a sense of self, of taking control and responsibility, often combining optimism for the future with acceptance of the past. Service users describe a wide range of transitions at work in the recovery process. Finding meaning in and for psychotic experiences can be empowering, as can the emphasis on spirituality that is common in patients’ accounts (Reference Faulkner and LayzellFaulkner & Layzell, 2000; Reference LeibrichLeibrich, 2001).

From within the user movement, Reference ColemanColeman (1999) has emphasised that recovery depends far more on self-help and collaboration than on being treated:

And although this risks formulating recovery as ‘simply’ an act of faith, it is apparent that it will be difficult to realise recovery without faith and hope in the possibility.

A shift of professional role from authority to coach

Recovery might not be in the gift of doctors, but the skills, knowledge, authority and commitment of psychiatrists can have a significant influence on the promotion and implementation of recovery-based approaches. A change in the role of the psychiatrist is required, from someone who is perceived as a remote expert or authority to someone who behaves more like a coach or personal trainer, offering professional skills and knowledge, while learning from and valuing the patient, who is an ‘expert by experience’. There are striking stories of how effective this can be when ‘seeing a psychiatrist’ is experienced by patients as having alongside an trained and committed person, who believes in them and their future (Reference Ramsay, Page and GoodmanRamsay et al, 2002).

Focusing on the core significance of hope and optimism

Being met with hope and optimism, especially at the initial contact, is of central significance in many people's accounts of recovery, and ‘offering help, treatment and care in an atmosphere of hope and optimism’ is the first and overarching principle in the NICE clinical guidelines (National Institute for Clinical Excellence, 2002: 1.1.1.1). This has implications for staff selection and training to enable them to foster hope-inspiring relationships (Box 3) and exhibit recovery competencies (see Box 5).

Timing responses: what helps when?

Reference McGorryMcGorry (1992) describes the need to carefully match explanations of illness to the patient's readiness to accept them. He advises us ‘to avoid adding insight to injury’, for denial of illness, especially early on, may have a self-protective function (Reference DeeganDeegan, 1988). Furthermore, although a ‘sealing-over’ recovery style predicts poor engagement, the common shift from ‘integration’ to ‘sealing over’ in the first 6 months is associated with symptomatic improvement (Reference Tait, Birchwood and TrowerTait et al, 2003). If symptoms carry significant meanings for individuals, then their presence and absence are both significant, and the process of recovery may be accompanied by complex losses and powerful realisations (Reference RobertsRoberts, 2000; Box 4). Insufficient attention has been given to the dynamics of resistance in considering recovery, but all of this contributes to a growing view that working with psychotic symptoms may be more helpful than attempting to demonstrate their falseness.

Medication and medicating: more than compliance

Many service users have considerable problems with the need to take medication. It is often not just the drugs themselves, and their unwanted effects, but the whole implication of taking something for a ‘broken brain’, and the atmosphere of persuasion or compulsion that often surrounds them. Many patients associate being well with giving up medication, even when there are adverse, and sometimes repetitive, consequences.

There is therefore much to be gained in working for a negotiating stance, in which risks can be taken within safe parameters and lessons learned from experience. Individuals then have an opportunity to value the use of their (own) medication as a tool in pursuit of their recovery. As described in the NICE guidelines (National Institute for Clincial Excellence, 2002: 1.4.5 & p. 48), such negotiation and choice should be based on a well-informed and thoughtful search for the most effective medication in the lowest dose and include recognition that, for some, the experience of taking medication can be worse than the disorder. It also needs to be acknowledged that it is possible for some to recover and stay well without medication, but there is no reliable way of knowing who will remain well, and stopping medication is probably the most common cause of relapse.

Working with risk: a shift from risk avoidance to risk-sharing

Deegan's rallying call that ‘professionals must embrace the concept of the dignity of risk, and the right to failure if they are to be supportive of us’ (Reference DeeganDeegan, 1996) seems completely at odds with the risk-averse climate in which we live and work, where, for instance, patients often have to be medically ‘vetted’ before an occupational therapist can take them for a cycle ride. And yet risk is inevitable, and healthy. We begin to take risks with our first few steps in life, and without risk there is no progress or development.

For psychiatrists, stopping a patient's medication can represent the risks that epitomise the tensions involved in implementing a recovery model. Failing to distinguishing between a temporary exacerbation of symptoms due to medication reduction and a genuine relapse carries the possibility of reinforcing the belief that medication needs to be lifelong. Reference May, McGorry and GleesonMay (2004) describes his experience of medication as intolerable, especially as, for him, the ‘psychic indifference’ towards psychotic symptoms carried over into every aspect of life. He went into hiding from family and services for weeks and experienced what he describes as a withdrawal syndrome that was quite different in quality from previous episodes of psychosis and that resolved spontaneously. He subsequently took a psychology degree and trained as a clinical psychologist. He has remained medication-free ever since and has become a highly respected witness and advocate for recovery. A single story cannot support ‘non-compliance’ as a route to recovery, but if an individual is determined to stop medication, a recovery-oriented approach should aim to negotiate a phased reduction, during which contact and relationship is maintained, reducing the risk of relapse through awareness of early signs and enabling both patient and prescriber to learn from the experience.

Promoting self-management

Empowerment is seen as a core dynamic in promoting recovery (Reference Repper and PerkinsRepper & Perkins, 2003). There is increasing awareness of the value of detailed self-management strategies that help individuals to take control of their experience and their lives. The Wellness Recovery Action Plan (WRAP; Reference CopelandCopeland, 2002) is one of the most popular and well-established recovery tools. It begins by helping individuals to equip themselves with ‘personal wellness tools’. This involves identifying actions, thoughts and behaviours that, from personal experience, are associated with staying well and reducing symptoms. These tools are then incorporated into a written plan, which includes daily maintenance, triggers and how to avoid them, warning signs and how to respond to them, and a crisis plan.

Hospital should be a ‘springy safety net’

Although Reference May, McGorry and GleesonMay (2004) acknowledges that hospital was a useful safety net for him and his family, he speaks for many when he writes ‘my main complaint was the lack of springiness in the net to allow me to get back on the tightrope’. Service users want rapid access to help in a crisis, but once the crisis has resolved they do not necessarily want to be caught up in long-term involvement and monitoring, however much health care professionals may regard that as prudent. They would also like to be able to renew contact with their service as soon as problems arise, without having to wait for complex referral processes to be instigated. This points towards redesigning some aspects of the care programme approach to include a more user-oriented recovery plan.

The expert patient

There is a progressive move throughout the NHS to value patients as ‘experts in their own experience’ (Department of Health, 2001a ). There is a complex need to reconcile the emergent role of ‘expert by experience’ with the role of health care professional, to balance the preservation of patient autonomy with the professional's duty of care for some of the most vulnerable people in society. There is inevitable difficulty in this, but also considerable opportunity in finding safe and respectful ways of opening this dialogue. A recovery-based service centres staff training on the lived experience of service users. Such training sessions typically cover the history of recovery and its social context, the language used by clinicians, the importance of complementary therapies and the use of the WRAP. During training sessions, mental health workers often reveal their own experience of mental illness (C. Willey, Clinical Nurse Manager, Black Country NHS Trust, personal communication, 2003). Learning benefits include focusing on life rather than illness, changes in the use of language and greater emphasis on what patients value most: safe and satisfactory accommodation, sufficient money, supportive relationships, work and meaningful activity.

Valuing ethnicity and diversity

The North American recovery literature has been criticised for an excessively individualistic approach which sidelines ethnicity and its social consequences for users, ‘projects traditional American values onto disabled people, such as rugged individualism, competition, personal achievement and self-sufficiency’ and fails to appreciate that, for some service users, independent living can be a lonely experience in a single room in a rooming house (Reference DeeganDeegan, 1988). This contrasts with the New Zealand perspective, particularly in the context of Maori people (Reference Fenton and Te KoutuaFenton & Te Koutua, 2000; Reference O'HaganO'Hagan, 2001; Reference Lapsley, Waimarie and BlackLapsley et al, 2002), which has illustrated the importance of valuing a person's cultural origins and personal meanings as reference points around which to support their citizenship and combat stigma. Recovery is then based on ‘knowing who you are, and where you come from, and re-integrating yourself with your own people in your own way’ (Reference Lapsley, Waimarie and BlackLapsley et al, 2002), a sentiment that carries universal relevance and appeal. There is also a great need to recognise the significance of celebrating the small achievements of ordinary living (Reference LeibrichLeibrich, 1999), rather than risk being eclipsed by culture-bound heroic ideals.

Making recovery worth it: what is there to recover for?

Traditional medical approaches attempt to relieve adverse experiences with little consideration given to what happens next. Reference Butterworth and DeanButterworth & Dean (2000) describe how a survey of mental health service users in the Bristol area found that less than half of the participants were engaged in any form of occupational activity. This led to the creation, in 1997, of a Work Development Team, which has since become a ‘Beacon site’. The team has helped over 200 people in returning to full-time employment, and it included a job retention service which has helped over 50 people to remain in their jobs and 19 to explore other career paths before successfully returning to the labour market (R. Butterworth, personal communication, 2003). Work and employment have such a major role in recovery, bringing financial, social, existential and spiritual benefits, that there is a clear case for drawing occupational therapists back from generic roles in community teams. Mental health services could also put their own house in order by developing supported employment schemes within trusts (Reference Repper and PerkinsRepper & Perkins, 2003).

Difficulties over diagnosis and steps towards a common language

The development of a professional language and identity can be seen as part of a ‘tribal’ induction that sets us apart, and membership of the group follows a formal exhibition of proficiency to its elders. However, mental health workers have recently been advised to develop their specialist knowledge and language in such a way that it can easily be shared with the service users to whom it refers (National Institute for Clinical Excellence, 2002: 1.1.7). The Department of Health's (2003) guidance on copying letters to patients will oblige psychiatrists, in common with all doctors, to write in a way that patients can readily and usefully understand.

Diagnoses are a recurrent concern. They are perceived by some as ‘life sentences’, inducting a person into expectations of life saturated with problems, with all the associated pessimism and stigma. Diagnoses can be experienced as overwhelming, eclipsing personal identity, so that, for example, people with mental illnesses become ‘schizophrenics’. Reference Davidson and StraussDavidson & Strauss (1992) found that a key correlate of favourable long-term outcome in schizophrenia was that individuals were able to differentiate themselves from their diagnosis and that they had a sense of an intact, healthy self, separate from their illness experience: a ‘me’ separate from an ‘it’. It is noteworthy that Leibrich's anthology of personal recovery stories, in which people write about their unique lives and personal illness experiences (Reference LeibrichLeibrich, 1999), was commissioned by the New Zealand Government as part of its national anti-stigma campaign. The exchange of meanings and stories by people with severe illness can itself significantly influence their experience, and it is central to the message of the recovery literature that redefining oneself as being ‘in recovery’ has consequences very different from those of being defined by others as ‘chronically ill’ (see also Reference KleinmanKleinman, 1988).

Diagnostic caution is commendable when considering severe mental illnesses, but it carries the risk of diagnostic dithering or avoidance, which may risk an unhealthy collusion with a patient or relatives, provoking divisions within a family and becoming a barrier to desperately needed treatment and support. Practitioners need a sophisticated understanding of what diagnosis is, and is not, and should make sure that they are at least as aware as their patients of the continuing debate over the diagnosis of schizophrenia (Reference van Os and McKennavan Os & McKenna, 2003).

Medical notes are often taken, for example by the courts, as an objective and accurate record of what has happened and why, although they are clearly a medical interpretation of events. In an interesting and provocative development, we are now required to support individuals in writing their own account of their illness in their notes (National Institute for Clinical Excellence, 2002: 1.3.3). There is the explicit aim of helping patients to understand what has happened to them and to give an account of it in their own words. There should no longer be a single account of the illness experience, refracted through a medical perspective. Current guidance promotes the preservation of a diversity of viewpoints within the official record.