What is recovery?

What is recovery?

John Martin Luby

1963-2017

As some of you know, John, my uncle was one of the inspirations for my nursing career. I was very fortunate to have had the opportunity to sit with him as part of writing an assignment during my training. The day before MH Nurses day, I thought I would share it.

 “Recovery is about being a free agent, being independent. Being in control; of your medication, of what you eat, when you go to bed. It’s about finding a purpose in the everyday. My mum loved me for who I was and didn’t see a label. Living a normal life free from that label. That is recovery to me.” Martin (2014.)    

Recovery is not an intervention, and it can and does occur without professional involvement. Mental health services have the ability to facilitate or impede, help or hinder this process and this assignment will establish that. I will demonstrate my own understanding of recovery, and some of the challenges to it that are faced by both the service user and the service in practise. I will do this by eliciting a case history from somebody living with mental health difficulties and then critically appraising interventions that the individual has been in receipt of. (Repper & Perkins, 2003).

Martin, a pseudonym in order to protect his identity, is an expert on recovery and the challenges to it from subjective experience; he was diagnosed with schizophrenia in 1974 and has had more than fifteen compulsory hospital admissions since. Given the long history of schizophrenia as a target for misconception, this assignment will be based on Martin’s actual experiences, from his own perspective as much possible. It is Martin’s personal definition of recovery that introduces this work. At present he resides in extra care housing, his own self-contained home but with care and support available on site. He takes a number of psychotropic medications, and has a weekly depot injection that is administered by his care co-ordinator, a community psychiatric nurse who is part of a community recovery team; a multi-disciplinary team that works with service users, carers and other agencies in order to promote recovery.

The varying concepts of recovery pose a challenge in themselves. From a biomedical perspective recovery is the removal of an underlying biological cause and return to previous functioning and by these standards few people with severe mental illness will ever recover completely (Roberts & Wolfson, 2004). It has also been described as the reduction of symptoms and deficits to the extent that they no longer interfere with daily functioning. Although studies have shown that partial to full recovery can be realised by between one quarter and two thirds of people with a diagnosis of mental illness, these notions can invite further opportunity for feelings of failure, generate false hope, or collude with a person’s denial. (Davidson et al 2005; Frese et al 2009.) The concept of recovery in mental illness is derived from the service user/survivor movement itself and Martin’s definition subscribes to it. Recovery in mental illness is the “process of living one’s life, pursuing one’s personal hopes and aspirations with dignity and autonomy, in the face of the on-going presence of an illness and/or vulnerability to relapse.” (Davidson & Roe, 2007 p459). Whilst some people can and do make a recovery from mental illness, recovery in mental illness is not only a possibility but ought to be a reality for all.  Hope is identified by many as the starting point for their own recovery, and generating hope for recovery in others, requires services to believe that such hopefulness is justified. (Slade, 2009).

Schizophrenia is caused by complex interactions and the simplistic notion that every symptom tells a story draws on the complexities of biological psychological and social factors that can exert their effects on an individual over time. (Zubin & Spring, 1977, Davidson, 2003). Martin is a 63 year old male, the third born of ten children, to Irish Roman Catholic parents, and was raised in a three bedroom house in a London suburb. His childhood was underprivileged with an often violent father, but it was a contented one. The period preceding being admitted to hospital and given the diagnosis of paranoid schizophrenia was one in which Martin believed that the devil was taking over the world, citing the paving over of drive ways to make way for cars, the taking over of small independent shops by bigger chains and the influx of new technology. He became progressively sensitive to noise, mainly traffic and the television, in particular news programmes. These are symptoms that are identified as relapse indicators or early warning signs in his current care plan. He was suspicious of the intentions of others, and fearful, spending long periods of time living in isolation, at the loft of his family home, or a church hall.

 Self-determination theory postulates that human beings achieve goals and sense of meaning under conditions that support the fulfilment of basic human needs and paranoid delusions can make someone feel unsafe in their own domain. Physiological and safety desires must be met psychological needs or self-fulfilment can be. (Maslow, 1954; Ryan and Deci, 2000.) Under the Mental Health Act admission and detention is made on the grounds that a person is suffering from mental disorder that warrants detention and that they ought to be detained in the interest of their own health and wellbeing or the health and protection of others, the hospital is identified as a place of safety. (Department of Health, 2007.) Professionals can be judged to be negligent if they fail to use the powers of compulsion that are available to them and “a focus on personal recovery is not a charter to stand back and let tragedies happen” (Slade, 2009 p.182). 

Martin refers to the hospital as a place for people to go when they are at their most vulnerable, when they need a certain kind of shelter. (Martin, 2014.)  However too often the experience is felt to be neither safe nor therapeutic, it can exacerbate existing difficulties or create new ones. (Department of Health, 2002.) Inpatient units are challenging settings for recovery as the main interventions offered are medication and containment, and usually there are few or no other treatments or services available. A focus on personal recovery demands a different kind of environment, where medication is prescribed and containment is offered but only if an individual wants this sort of treatment. In order for a person to take control of their life and regain a sense of agency and worth they must be given the opportunity to make choices and have options to choose from.

When Martin was first hospitalised, the hospital had an occupational centre, where patients could acquire social and work skills to prepare them for a return to the community. Martin speaks of the industrial therapy unit with affection “We were no longer just schizophrenics, or depressives. We were a ‘somebody’ again, whether we tended the gardens, washed the cars, or made the tea.” (Martin, 2014.) The industrial therapy unit provided conditions where it was possible to experience life as a person and not an illness, to develop a positive identity outside that of a person with mental disorder. Participation in meaningful activity is associated with heightened self-esteem, wellbeing and mental health (DH 2011). Despite this industrial therapy units were often criticised as a poor medium through which to reintegrate people with mental health problems into work and society. (Evans & Repper, 2000).

There is little comparable provision in modern mental health services and arguably as in-patient care has moved away from the ‘old asylums’ the newer buildings have been a let-down. Many wards do not have garden access, equipment for activities, or enough room to accommodate activity. The sole focus is on the mental illness and this sets the context for the mental illness to become an engulfing one. As a consequence of the emphasis on community care and early intervention, the threshold for admission has risen dramatically and inpatient services often operate as crisis services rather than therapeutic interventions.  There are few positive indications for admitting a patient to a ward and admittance to one is now often seen only as a failure. (Brennan et al, 2006.) When therapy and activity does exist, it is often uniformly offered in a routine programme with due regards for the individual’s needs. Recovery is not only about treating symptoms, preventing or managing relapse, but living a fulfilling life and regaining a sense of meaning and in order to promote it a person centred approach must be adopted, one that not only manages the crisis but supports the individual in their recovery journey and a lack of space, or poorly designed buildings is not an excuse for this not to happen.

Martin was first admitted to hospital and diagnosed with paranoid schizophrenia at the age of 23, psychotic symptoms typically emerge in men in their late teens and early twenties (McManus et al, 2009).  Kraeplin was the first to label a set of symptoms that included delusion disorganised speech and disorganised behaviour and deemed it to be a debilitating condition with a slow and deteriorating prognosis. (Kraeplin, 1919). A diagnosis of schizophrenia is based on evidence of subjective experience; symptoms, and observable behaviours; signs and refers to a group of conditions that occur in approximately 1% of people worldwide. (MNT Knowledge Centre, 2014.)  For some diagnosis can serve a purpose as it can provide a framework, meaning and understanding to an experience or imply that a person is not alone in what they are experiencing. Nevertheless, more than half of people diagnosed with schizophrenia report that diagnosis has been a disadvantage to them and Martin refers to recovery as being able to live a life free from a label. (Thornicroft et al, 2009; Martin, 2014.) Negative effects following being diagnosed with mental illness include a loss of sense of self, loss of power, loss of meaning, and loss of hope, all of which serve to oppose personal recovery and can add to the disability of mental illness. (Spaniol et al, 2012.) A diagnosis has stigmatising consequences which can include labelling, stereotyping, status loss and discrimination and can reduce the individual “from a whole and usual person to a tainted or discounted one”. (Goffman, 1963 p.3; Link & Phelan, 2001).

The “label rather than the behaviour per se shapes fate of mentally ill persons, by creating chronic mental illness or by compromising the life chances of those so labelled.” (cited in Rosenfiled, 1997 pg. 60). Recovery from schizophrenia involves overcoming not only mental illness, but the consequences of diagnosis itself. Schizophrenia is considered to be the most severe and disabling of all mental illnesses and this perpetuates the Kraeplin legacy of hopelessness, helplessness and despair. The diagnosis itself makes it harder for a person with a mental condition to marry, have children, work or have a social life all of which are accomplishments that Martin has not realised. (Thornicroft et al 2009; Davidson et al 2005.)

A diagnosis is needed in order for service users to access many forms of health and social benefits, support and entitlements, and the reliance on it for this to happen is one that must be addressed at a higher level.

Whilst diagnosis is beneficial for some, Martin’s acceptance of his illness is not reliant on it. At the age of eight he was hit by a car had numerous broken bones, and after an extensive stint in hospital did not return to main stream education. Martin believes that what the professionals call ‘schizophrenia’ is a physical injury that he sustained during this incident, a ‘type of brain damage.’ Framing mental illness involves the development of a personally satisfactory meaning to what the professionals call mental illness and has been identified as the first step in recovery. (Slade, 2009; Davidson, 2003.) The meaning does not need to subscribe to a particular framework or conceptual model, just as Martin’s does not and can be based on diagnosis, cultural or spiritual beliefs. In constructing meaning to an experience the individual is able to move on from a period of denial, or a vision of self that is immersed in the role of mentally ill person.

Professionals need to work in partnership with those with mental health difficulties, not only in constructing meaning to the experience but learning to move on from it. Martin has not experienced paid employment post diagnosis, yet re-counts with fondness the milk and paper rounds that he kept as a child and making a guy fawkes each bonfire night. Employment is more than just a source of income; it can improve quality of life, social networks and support, status and identity and is a means of structuring and occupying time (Repper & Perkins, 2003.) Martin states that recovery to him is about finding a purpose in the everyday. Employment is central to the lives of most people. For those already excluded because of their mental health problems it can take an even greater prominence. (Repper & Perkins, 2003).  

Only 19% of people with a diagnosis of schizophrenia are in paid employment, against average rates in the general population of 80%. (Haro et al, 2011.) Barriers to employment include discrimination, economic disincentives, the attitude and self-esteem of the individual and a lack of support offered by services. Mental healthcare professionals are no less susceptible to the views of the general population and can have low expectations of those in their care and low appreciation of the importance of work as a desirable outcome. (Marwaha et al. 2009).  Professionals need to recognise that work is important for many individual’s recovery, and if they desire to work they should be supported and encouraged to do so. Martin was training to become a social worker when he was first hospitalised and was told that whilst he had symptoms he was not able to return to study or to work. In reality, symptoms are often manageable in the work environment and with appropriate assistance, services and support at least 50% of those who experience on-going mental health problems can gain and sustain employment. (Becker et al 2007). In order for considerably larger number of people to gain access to and remain in employment, services need to work not only with service users, but with job centres, employment agencies, and educational providers.

Side effects of medication can present a further barrier to finding employment or purposeful activity. As with all psychological therapies, some people benefit immensely from taking medication and others do not, yet nearly everyone who comes into contact with mental health services is expected to take some form of psychoactive drug. In order to promote recovery, health professionals should think of and present medication as just one of many things that might help a person, yet this is often not the case. Martin takes a number of medicines daily and would like to have control over this aspect of his treatment; to take them independently, and reduce the dose, due to side effects that make him feel ‘like a zombie’. Despite this his medication has not been reviewed since 2010 and he takes all of his medication when required under supervision.

Services are presented with the challenge of supporting a person’s recovery whilst having the knowledge that non adherence to antipsychotic medication has been associated with rehospitalisation and relapse. Relapse is linked to a growth of residual symptoms, and an escalation of social disablement (Birchwood et al, 2000).  For this reason, it is often thought that any decision to reduce or stop medication is irrational, harmful, or not in a person’s best interests. However, this thinking is a barrier to supporting a person’s recovery and “the loss of self is exacerbated further by a system that reinforces passivity and compliance over autonomy and independence.” (Davidson, 2003 p.49).  Having responsibility taken by others can encourage stabilisation is the short term, but in the long term can lead to dependence, and detachment and can discourage the person’s own efforts towards recovery and self-management of their illness. (Slade, 2009).  People with mental illness have a right to request a review of their medication and support should be provided to any service user who wishes to decrease their medication or to attempt to manage without it and we should work with them to agree what medication works best for them and monitor the benefits and effects over time, with close observation, due to the risk of relapse. (The Schizophrenia Commission, 2012.)  Almost all aspects of mental health contain risk but one of the greatest risks is to become a challenge to somebodies recovery when they face so many challenges of their own. “Professionals must embrace the concept of the dignity of risk, and the right to failure if they are to be supportive.” (Deegan, 1996 p.97).

The UK government claims that it is working to improve the mental health and wellbeing of the population, and to improve outcomes for people with mental illness. (DH, 2011.)

To do so requires would require a major change in the way that the priorities of those with mental illness are regarded. Mental health service users are often excluded from health promotion services. (Nash, 2010.) Martin’s fingers bare the tell-tale yellow brown stains of nicotine addiction and he has smoked over thirty cigarettes a day since adolescence. During his most recent appointment with his General Practitioner, for blood pressure monitoring, it was revealed to him that he had been diagnosed with chronic obstructive pulmonary disease, COPD, in 2011. The moral basis for evoking the therapeutic privilege of withholding information is that it can be beneficial for the patient and avoid inflicting harm on them, thus allowing the principles of beneficence and nonmaleficence to be upheld. (Edwin, 2008.) However, consciously concealing information from a competent individual is neither ethically defensible nor acceptable from a recovery perspective, and deprives the person of their right to autonomy and the opportunity to face their situation. Stopping smoking is one of the most crucial components in the management of COPD, yet Martin has not been offered nor benefited from smoking cessation services (NICE, 2010).

 It is also anticipated that in the future “More people will have a good quality of life – greater ability to manage their own lives, stronger social relationships, a greater sense of purpose, improved chances in education and employment and a suitable and stable place to live ”. (DH, 2011 p.6). In order for these predictions to become a reality a major shift must occur. We must change the way that mental health services are organised and operate; historically, mental health services have aimed to achieve recovery through the treatment of symptoms and prevention of relapse. Instead, we must strive to find out what recovery means to those that use our services, to learn to walk alongside them and support them to live the meaningful and satisfying lives that they desire and deserve. This will involve challenging negative attitudes and stigmatising beliefs, our own, our colleagues, our service users and societies. (NMC, 2010.)

Mental health services extend their authority on most aspects of service users lives, and as such we have the power to be the difference in a person’s recovery journey; both the help and the hindrance. We must recognise that we are not experts, the only expert is the person that is taking the journey and that person should be involved in all aspects of their care. Recovery is not a magical transformation, nor is it a cure, it does not involve the improbable prospect of returning to what preceded illness. (Roberts & Wolfson, 2004). Recovery is the cautiously optimistic process of learning to live “a satisfactory, hopeful and contributing life even with limitations caused by illness” (Anthony, 1993 p527.) Hope is often identified as the starting point of recovery from schizophrenia. I hope to become the kind of nurse that helps to make the recovery journey worthwhile. Martin‘s recovery journey is yet to reach its final destination...

(R.I.P John Martin Luby)

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