Lengua e identidad cultural

This chapter will describe the context and provision of mental health services and how, within this, user involvement is recognized and realized. Mental health services share a number of characteristics with the other two settings under examination but, while its users include women and it operates within a similar policy context, it also differs from them in four key ways. First, the users of mental health services are not exclusively women as in the cases of the other two settings. As discussed in the introduction, this study wished to explore the range of conditions under which the policy on user involvement was being implemented. Therefore, it was felt to be important to include a setting within which women were not the sole users but, where it is known that they have different issues and are treated differently. Mental health services appeared to provide such a setting, as there exists a significant body of evidence to suggest that gender is a factor in the development and treatment of poor mental health (Department of Health 1995a; Payne 1995).

Second, mental health services differ from maternity and gynaecological oncology services in that they are characterised by the wide of range of levels of ill health and types of treatment and support on offer. As a result, the language used to describe users is perhaps more varied in mental health than in any other sector of health. The term ‘users’ is most frequently used rather than ‘patients’. To some commentators ‘patient’ implies users as objects of the clinical gaze of mental health professionals (Pilgrim & Rogers, 1999) and therefore in terms of their illness. However, ‘users’ can also be seen as consumers, survivors and providers, all of which imply different notions of the roles and

responsibilities of people with mental health problems and the relationship between them and mental health services (Tait & Lester, 2005).

Third, people who have acquired a psychiatric history often experience discrimination. While there may also be a level of stigma associated with an illness such as cancer, it is argued that the term 'mental illness' often carries a multitude of emotive and negative connotations leading to a disproportionate level of stigma or discrimination (SAMH, 2005). The response from mental health services is thus extended from merely addressing medical and care needs, to include focusing on prejudice and addressing socially created barriers (Oliver, 1998). Finally, mental health services are unique in health in that they have a compulsive element (Perkins & Repper 1998; Ryan 2002; Rankin 2005).

The first section of this chapter will describe the context of mental health services and the particular issues that have influenced the development of user involvement before moving on to discuss its implementation in individual care and treatment, in examining services and in strategic planning.

The Context and Provision of Mental Health Services

‘Mental illness' is a shorthand term for a variety of conditions that affect the functioning of the mind. It is a catch-all phrase that covers a wide range of symptoms and experiences, and has many permutations (SAMH, 2005). Mental illness often has a combination of causes. Genetic pre-disposition may make some people more susceptible while environmental factors such as lifestyle changes; social and economic circumstances or adverse life situations may also be involved. However, sometimes people develop mental illness or mental health problems as mental illness is also described, without any

explanatory outside trigger (SAMH, 2005).

One in five adults in Scotland is affected by mental health problems at any one time, with nearly one third of GP consultations involving mental health (Scottish Executive, 2000). Mental health problems can refer to conditions as diverse as depression, anxiety, phobias, eating disorders and schizophrenia. A common classification divides conditions into those defined as ‘severe and enduring’ and those that are ‘mild to moderate’. Severe mental illnesses are defined as those in which psychosis is likely to occur. Psychosis is the medical term used to identify symptoms where the individual experiences a loss of reality and cease to see and respond appropriately to the world to which they are used. The majority of people diagnosed with mild to moderate mental health problems experience affective disorders whereby their mood is altered to such an extent that it interferes with their ability to function, feel pleasure, or maintain relationships (Kleinman & Cohen, 1993).

Diagnosis is arrived at by a psychiatrist in conjunction with other health professionals. A full medical history, observation over time and pre-determined criteria are used to explore the person's behaviour and develop an understanding of how their condition has developed. Assessment follows one of the internationally agreed diagnostic schedules such as the International Classification of Diseases (ICD10) or the Diagnostic and Statistical Manual (DSMIV) (Priebe & Slade, 2002). Reaching a diagnosis can often be difficult and it takes time to be sure that the individual's symptoms truly indicate a particular mental illness. Some symptoms, such as hallucinations, can also appear in other medical conditions, for example high fever or brain tumour, and many different mental illnesses have overlapping symptoms making it difficult to tell the conditions apart (National Institute of Mental Health, 2005).

A diagnosis of mental illness can cover a wide range of symptoms leading to very different experiences for those affected. Being an acute in-patient is one aspect of the experience of those with mental health problems but beyond this group there are many more people who

are less visible. There are individuals with long-term, serious but stable mental health problems that live in the community. Many lead lonely, isolated lives with few close friends or social networks (Corry et al, 2004). There is yet an even larger number with relatively common mental health problems, many undiagnosed. Over 90% of all those with mental health problems are seen in primary care but despite this relatively few GPs appear to have a special interest in mental health (Boardman et al, 2004). It has been government policy for many years to transfer mental health services to the community, but despite this there have been very few hospital closures and the majority of resources continue to support acute inpatient services. In 1999, the NHS spent £224 million on adult mental health services with 78% invested in hospital inpatient care; however, 80% of people with mental health problems were then living in the community (MIND, 2003). As the experiences of individuals can vary so significantly it will be worth describing the principal conditions that can affect individuals before going on to consider the extent and nature of user involvement in mental health.

Signs and Symptoms of Severe Mental Health Problems

In general terms, the signs and symptoms of a severe mental health problem is the presence of psychosis e.g. having hallucinations or delusions (American Academy of Child and Adolescent Psychiatry, 2001). With hallucinations someone may hear their own thoughts as if they are coming from an external source. They may see, smell or taste things that appear to be real but which are not being experienced at that time by anyone else (Health Canada, 1991). People who have hallucinations often try to find an explanation for them and may attribute them to beliefs that others may see as strange or delusional. This kind of distorted thought pattern might cause very severe anxiety called paranoia (American Academy of Child and Adolescent Psychiatry, 2001).

Schizophrenia is an example of a severe mental illness as it is a condition that distorts thoughts and perceptions. During what is sometimes referred to as "an acute episode" the mental processes of experiencing and thinking become distorted. When severe this can lead to intense panic, anger, depression, elation or over activity, perhaps punctuated by periods of withdrawal. Schizophrenia is mostly episodic; a third of people who have experienced schizophrenia only experience one episode and make a full recovery, for others it can mean years of fluctuating between good health and illness, while some experience severe long-term incapacity (Schizophrenia.com, 2005). About one in a hundred people worldwide experience at least one such episode at some time during their lives, although the highest incidence is in the late teens and early 20's (Health Canada, 1991). However, it is an illness that can be treated and new forms of treatment may lead to further improvement in rates of recovery.

Signs and Symptoms of Affective Disorders

Affective disorders include depression, bi-polar disorder and anxiety disorders. In contrast to the normal emotional experiences of anxiety, sadness or loss these disorders are

persistent and can interfere significantly with an individual’s ability to function.

Depression is one of the most common conditions in Scotland, affecting one in five people at some stage in their life. Everyone experiences variations in mood, but a depressive disorder is an illness that involves the body, mood and thoughts. It is a continuous and all consuming sense of hopelessness and despair that affects the way a person eats and sleeps, the way they feel about themselves and the way they think about things. A depressive disorder is a serious mental health problem whose symptoms include persistent sad mood, difficulty sleeping or oversleeping, physical slowing or agitation, feelings of worthlessness or guilt, difficulty thinking or concentrating and recurrent thoughts of death or suicide. A diagnosis of uni-polar major depression (or major depressive disorder) is made if a person has impairment in usual functioning nearly every day during the same two-week period. Episodes typically recur (Depression Alliance, 2003). Sometimes people will get better by themselves without intervention. Others will experience recurrent bouts of depression in- between periods of good health. Without treatment, symptoms can last for weeks, months, or years. However, more than 80% of those suffering from depressive illness can be treated successfully with medication (Depression Alliance, 2003).

Bi-polar disorder, also known as manic depression, is a brain disorder that causes unusual shifts in a person's mood, energy and ability to function. It is a depressive condition, punctuated by episodes of extreme euphoria. It usually occurs in cycles, with long periods of depression followed by a manic high. The symptoms of bi-polar disorder are severe, often resulting in damaged relationships, poor job or school performance and even suicide. Around 1% of the population age 18 and above in a given year has bi-polar disorder. It is often not recognised as an illness, and people may suffer from years before it is properly diagnosed and treated. Like diabetes or heart disease, bi-polar disorder is a long-term illness that must be carefully managed throughout a person's life (MDF, 2004).

Anxiety disorders, which are the most common form of mental illness, include generalised anxiety disorder, panic disorder, obsessive-compulsive disorder and phobias. Whilst anxiety, worry and fear are feelings that everyone experiences from time to time, some people experience these disproportionately to the threats around them (Royal College of Psychiatrists, 2004). They may feel excessively anxious in certain situations, such as when they are with other people, or anxious a great deal of the time. When fear and anxiety are excessive they can be a significant problem and can have profound consequences on life (National Institute of Mental Health, 2005). Obsessive Compulsive Conditions are

characterised by the performance of a range of bizarre and seemingly irrational rituals that assist the individual to manage their anxiety. While the person affected may be fully aware that this repetitive behaviour is fruitless, they are unable to stop (MIND, 2005).

Thus, it can be seen that the term ‘mental health problem’ describes a multiplicity of experience where, unlike physical illness, symptoms are not usually apparent to the outside world.

Women and Mental Health

Mental health services differ from the other settings explored in this study in that both men and women are potential users. However, it would appear that a gender-blind paradigm dominates in mental health that results in gender often being ignored in the understanding of, and treatment approaches for, people with mental ill health (Jennings 1994; Cogan 1998). Nevertheless, there exists a growing body of evidence to suggest that it is a factor in the development and treatment of poor mental health. Women have significantly higher presentations of mental health problems than men do and the types of disorder generally differ (Department of Health 1995; Payne 1995). Some specific mental health difficulties such as post-natal depression are either exclusive to women or affect them more (Doyal, 1995). They are more likely to experience depression; anxiety and other neuroses while men have more psychotic illnesses such as schizophrenia (Kendrick et al 1993; Department of Health 1995).

Within this review no papers were identified that explored women’s perceptions of mental health services, nor any programmes designed to assist women to develop a voice in user involvement. User involvement activity was non-gendered, suggesting that the views of men and women did not need to be distinguished. Where women’s views and experiences were reported these related to the nature of the service under investigation rather than to any specific attempt to engage with women as a separate group. Activity with women was most pronounced in services for eating disorders, where a number of studies were

identified that explored the views of people with eating disorders. Interestingly, in all cases these papers described the views of “people” with eating disorders even though it was clear from the reported results that only women had taken part.

Thus, in the review of the extent and nature of user involvement in mental health it was not possible to distinguish women’s views and participation and so, unless stated, the user perspective represents both men and women. The next section will examine how the multiplicity of experience, levels of ill health and types of treatment has influenced the development of user involvement in mental health services.

The Development of User Involvement in Mental Health Services

The policy and political imperative for the involvement of users comes for mental health services against a backdrop and history of user movements that have often been viewed as confrontational and challenging for services (Hogg, 1999a). Much of this perceived challenge arises from a fundamental conflict in the perception of mental health and the locus of its symptomology. As the previous section has shown, the traditional

understanding of mental health is based on a medical model that locates the individual’s difficulties in the symptoms of their medical condition. However, over the past 20 years the disabled peoples’ movement has made considerable strides in promoting the

understanding and adoption of the 'social model of disability’ (Morris, 1998). This has influenced thinking in mental health and particularly had an impact on users’ definitions and understanding of mental health.

Unlike the traditional medical model that defines disability in terms of the relationship between an individual and their physical, sensory or mental impairment, this model defines disability as the relationship between an individual and their environment. It recognises that people who have physical, sensory or intellectual impairments or mental health problems are denied opportunities, discriminated against and excluded by barriers created by society. Disability activists and academics have argued that mental health services are part of the disabled peoples’ movement. Current service users, people who have been through the mental health system or who have otherwise acquired a psychiatric history often find their access to employment, housing and other necessities to a good quality life barred by others' discriminatory behaviour. In an understanding of disability as being about removing people's power, or denying access to power, people with mental illness are thus defined as disabled (McNamara 1998; Oliver 1998). Using this analysis, the range of appropriate service responses is extended from merely addressing medical and care needs to include focusing on prejudice, challenging inaccessible physical and communication environments, developing enabling technology and addressing other socially created barriers (Oliver, 1998). Many in mental health services, however, appear to have found such an analysis challenging as they are neither equipped nor resourced to tackle adequately issues of prejudice, stigma and discrimination and their impact on users. This history and conceptualisation of mental health has also influenced how users and user representation are viewed within mental health services. For the user of mental health services one of the more important influences has been the perceived impact that their mental health has on their decision-making ability (Myers & MacDonald, 1996). Rogers et al (1993) suggest that the notion that psychiatric patients are continually irrational

which do not support professional interests, can be rejected as irrational. It follows then, that if people with mental health problems are perceived as being incapable of making decisions, then it is unlikely that they will become part of the decision-making process. Accordingly, psychiatrists have expressed concerns over whether a user whose insight is affected by illness can play the role of consumer and concern about the role of user groups in developing psychiatric services has also been expressed (Crawford, 2001). Some have argued that psychiatry has a dual function in which the needs of users have to be balanced with a wider responsibility to society at large (Eastman, 1999) and that, as such, users are not in a position to make judgements as to the appropriate development and delivery of services.

User representation in mental health has also been questioned on the basis that unlike physical illness, mental illness is often hidden and symptoms are not usually apparent to the outside world. Many people prefer to keep their illness a secret, for fear of stigma or discrimination as the term 'mental illness' often carries a multitude of emotive and negative connotations (SAMH, 2005). In a recent study of service users perceptions of stigma, London and Scriven (2007) reported that both community and in-patient users continue to identify stigma as a barrier to social inclusion and an obstacle to care. They concluded that the experience of stigma resulted in a delay in seeking help, loss of self-esteem and was a serious inhibitor to social inclusion. This background of stigma and secrecy has profound implications for user involvement, as a pre-requisite for active participation is a

willingness to be identified as a user of services. As a result, concerns have been

expressed over the representativeness of those users who are prepared to come forward and identify themselves openly as individuals with a mental health difficulty (Mental Health Task Force 1995; NHS Health Advisory Service 1997; Department of Health 1999b; Crawford 2001). One particular criticism of those who act as user representatives is that some individuals may be ‘too well’, ‘too articulate’ or ‘too vocal’ to represent the views of users generally. However, Lindow (1999) suggests that the concept of representativeness may be used as a subconscious method of resisting user involvement:

“When workers find what we [users] are saying challenging, the most usual strategy to discredit user voices is to suggest we are not to be listened to because we are too articulate, and not representative. Workers seem to be looking for someone, the ‘typical’ patient, who is so passive and/or drugged that they comply with their plans… We ask, would workers send their least articulate colleague to represent their views, or the least confident nurse to