Community Alliance for the Ethical Treatment of Youth (CAFETY)

Addressing the problem: good quality care

The shifting paradigm

Over the past half century, the model for mental health care has changed from the institutionalization of individuals suffering from mental disorders to a community care approach backed by the availability of beds in general hospitals for acute cases. This change is based both on respect for the human rights of individuals with mental disorders, and on the use of updated interventions and techniques. A correct objective diagnosis is fundamental for planning individual care and choice of appropriate treatment. The earlier a proper course of treatment starts, the better the prognosis. Appropriate treatment of mental and behavioural disorders implies the rational use of pharmacological, psychological and psychosocial interventions in a clinically meaningful and integrated way. The management of specific conditions consists of interventions in the areas of prevention, treatment and rehabilitation.

he care of people with mental and behavioural disorders has always reflected prevail ing social values related to the social perception of mental illness. Through the ages, people with mental and behavioural disorders have been treated in different ways (see Box 3.1). They have been given a high status in societies which believe them to intermediate with gods and the dead. In medieval Europe and elsewhere they were beaten and burnt at the stake. They have been locked up in large institutions. They have been explored as scientific objects. And they have been cared for and integrated into the communities to which they belong.

 

Box 3.1 Mental care: then or now?

 

In Europe, the 19th century witnessed diverging trends. On one hand, mental illness was seen as a legitimate topic for scientific enquiry; psychiatry burgeoned as a medical discipline, and people with mental disorders were considered medical patients. On the other hand, people with mental disorders, like those with many other diseases and undesirable social behaviour, were isolated from society in large custodial institutions, the state mental hospitals, formerly known as lunatic asylums. These trends were later exported to Africa, the Americas and Asia.

During the second half of the 20th century, a shift in the mental health care paradigm took place, largely owing to three independent factors.

 

• Psychopharmacology made significant progress, with the discovery of new classes of drugs, particularly neuroleptics and antidepressants, as well as the development of new forms of psychosocial interventions.
• The human rights movement became a truly international phenomenon under the sponsorship of the newly created United Nations, and democracy advanced on a global basis, albeit at different speeds in different places (Merkl 1993).
• Social and mental components were firmly incorporated in the definition of health (see Chapter 1) of the newly established WHO in 1948.

These technical and sociopolitical events contributed to a change in emphasis: from care in large custodial institutions, which over time had become repressive and regressive, to more open and flexible care in the community.

The failures of asylums are evidenced by repeated cases of ill-treatment to patients, geographical and professional isolation of the institutions and their staff, weak reporting and accounting procedures, bad management, ineffective administration, poorly targeted financial resources, lack of staff training, and inadequate inspection and quality assurance procedures. Also, the living conditions in psychiatric hospitals throughout the world are poor, leading to human rights violations and chronicity. In terms of absolute standards, it could be argued that conditions in hospitals in developed countries are better than living standards in many developing countries. However, in terms of relative standards ­ comparing hospital standards with general community standards in a particular country ­ it is fair to say that the conditions in all psychiatric hospitals are poor. Some examples have been documented of human rights abuse in psychiatric hospitals (Box 3.2).

 

Box 3.2 Human rights abuse in psychiatric hospitals

 

In contrast, community care is about the empowerment of people with mental and behavioural disorders. In practice, community care implies the development of a wide range of services within local settings. This process, which has not yet begun in many regions and countries, aims to ensure that some of the protective functions of the asylum are fully provided in the community, and the negative aspects of the institutions are not perpetuated. Care in the community, as an approach, means:

 

• services which are close to home, including general hospital care for acute admissions, and long-term residential facilities in the community;
• interventions related to disabilities as well as symptoms;
• treatment and care specific to the diagnosis and needs of each individual;
• a wide range of services which address the needs of people with mental and behavioural disorders;
• services which are coordinated between mental health professionals and community agencies;
• ambulatory rather than static services, including those which can offer home treatment;
• partnership with carers and meeting their needs;
• legislation to support the above aspects of care.

The accumulating evidence of the inadequacies of the psychiatric hospital, coupled with the appearance of "institutionalism" ­ the development of disabilities as a consequence of social isolation and institutional care in remote asylums ­ led to the de-institutionalization movement. While de-institutionalization is an important part of mental health care reform, it is not synonymous with de-hospitalization. De-institutionalization is a complex process leading to the implementation of a solid network of community alternatives. Closing mental hospitals without community alternatives is as dangerous as creating community alternatives without closing mental hospitals. Both have to occur at the same time, in a well-coordinated incremental way. A sound de-institutionalization process has three essential components:

 

• prevention of inappropriate mental hospital admissions through the provisionof community facilities;
• discharge to the community of long-term institutional patients who havereceived adequate preparation;
• establishment and maintenance of community support systems fornon-institutionalized patients.

De-institutionalization has not been an unqualified success, and community care still faces some operational problems. Among the reasons for the lack of better results are that governments have not allocated resources saved by closing hospitals to community care; professionals have not been adequately prepared to accept their changing roles; and the stigma attached to mental disorders remains strong, resulting in negative public attitudes towards people with mental disorders. In some countries, many people with severe mental disorders are shifted to prisons or become homeless.

Reflecting the paradigm shift from hospital to community, far-reaching policy changes have been introduced in a number of countries. For example, Law 180, enacted in Italy in 1978, closing down all mental hospitals, formalized and accelerated a pre-existing trend in the care of the mentally ill. The major provisions of the Italian law state that no new patients are to be admitted to the large state hospitals nor should there be any readmissions. No new psychiatric hospitals are to be built. Psychiatric wards in general hospitals are not to exceed 15 beds and must be affiliated to community mental health centres. Community-based facilities, staffed by existing mental health personnel, are responsible for a specified catchment area. Law 180 has had an impact far beyond Italian jurisdiction.

The dominant model in the organization of comprehensive psychiatric care in many European countries has been the creation of geographically defined areas, known as sectors. This concept was developed in France in the mid-20th century and, from the 1960s on, the organizing principle of sectorization has been widely applied in almost all countries in Western Europe, with sector size ranging from populations of 25 000 to 30 000. The concept of the health district in the primary health care strategy has many points in common with this sector approach.

In many developing countries, care programmes for the individuals with mental and behavioural problems have a low priority. Provision of care is limited to a small number of institutions ­ usually overcrowded, understaffed and inefficient ­ and services reflect little understanding of the needs of the ill individuals or the range of approaches available for treatment and care.

In most developing countries, there is no psychiatric care for the majority of the population; the only services available are in mental hospitals. These mental hospitals are usually centralized and not easily accessible, so people often seek help there only as a last resort. The hospitals are large in size, built for economy of function rather than treatment. In a way, the asylum becomes a community of its own with very little contact with society at large. The hospitals operate under legislation which is more penal than therapeutic. In many countries, laws that are more than 40 years old place barriers to admission and discharge. Furthermore, most developing countries do not have adequate training programmes at national level to train psychiatrists, psychiatric nurses, clinical psychologists, psychiatric social workers and occupational therapists. Since there are few specialized professionals, the community turns to the available traditional healers (Saeed et al. 2000).

A result of these factors is a negative institutional image of the people with mental disorders, which adds to the stigma of suffering from a mental or behavioural disorder. Even now, these institutions are not in step with the developments concerning the human rights of people with mental disorders.

Some developing countries, particularly in the Eastern Mediterranean Region, have attempted to formulate national plans for mental health services, develop human resources and integrate mental health with general health care, in accordance with the recommendations of a 1974 WHO expert committee (WHO 1975; Mohit 1999).

In 1991, the United Nations General Assembly adopted the principles for the protection of persons with mental illness and the improvement of mental health care, emphasizing care in the community and the rights of individuals with mental disorders (United Nations 1991). It is now recognized that violation of human rights can be perpetrated both by neglecting the patient through discrimination, carelessness and lack of access to services, as well as by intrusive, restrictive and regressive interventions.

In 1990, WHO/PAHO launched an initiative for the restructuring of psychiatric care in the Region of the Americas, which resulted in the Declaration of Caracas (Box 3.3). The declaration called for the development of psychiatric care closely linked with primary health care and within the framework of the local health system. The above developments helped stimulate the organization of mental health care in developing countries.

 

 

 

 

Box 3.3 The Declaration of Caracas1

 

Where organized mental health services have been initiated in developing countries in recent times, such services are usually part of primary health care. At one level, this can be seen as necessity in the face of the lack of trained professionals and resources to provide specialized services. At another level, it is a reflection of the opportunity to organize mental health services in a manner that avoids isolation, stigma and discrimination. The approach of utilizing all the available community resources has the attraction of empowering individuals, families and communities to make mental health an agenda of people rather than of professionals. Currently, however, in developing countries mental health care is not receiving the attention that is needed. Even in countries where pilot programmes have shown the value of integrating mental health care into primary health care (for example, in Brazil, China, Colombia, India, the Islamic Republic of Iran, Pakistan, Philippines, Senegal, South Africa and Sudan), that approach has not been expanded to cover the whole country.

Despite the major differences between mental health care in developing and developed countries, they share a common problem: the poor utilization of available psychiatric services. Even in countries with well-established services, fewer than half of those individuals needing care make use of available services. This is related both to the stigma attached to individuals with mental and behavioural disorders and to the inadequacy of the services provided (see Table 3.1).

 

Table 3.1 Utilization of professional services for mental problems, Australia, 1997

Consultations for mental problems	No disorder	Any disorder	> 3 disorders
	%	%	%
General practitioner onlya	2.2	13.2	18.1
Mental health professional onlyb	0.5	2.4	3.9
Other health professional onlyc	1	4	5.7
Combination of health professionals	1	15	36.4
Any health professionald	4.6	34.6	64
a Refers to persons who had at least one consultation with a general practitioner in the previous 12 months but did not consult any other type of health professional.
bRefers to persons who had at least one consultation with a mental health professional (psychiatrist/psychologist/mental health team) in the previous 12 months but did not consult any other type of health professional.
cRefers to persons who had at least one consultation with another health professional (nurse/non-psychiatric medical specialist/pharmacist/ambulance officer/welfare worker or counsellor) in the previous 12 months but did not consult any other type of health professional.
dRefers to persons who had at least one consultation with any health professional in the previous 12 months.
Source: Andrews G et al. (2001). Prevalence, comorbidity, disability and service utilisation: overview of the Australian National Mental Health Survey. British Journal of Psychiatry, 178: 145-153.

This stigma issue was highlighted in the US Surgeon General's Report of 1999 (DHHS 1999). The report noted that: "Despite the efficacy of treatment options and the many possible ways of obtaining a treatment of choice, nearly half of all Americans who have a severe mental illness do not seek treatment. Most often, reluctance to seek care is an unfortunate outcome of very real barriers. Foremost among these is the stigma that many in our society attach to mental illness and to people who have a mental illness."

In summary, the past half century witnessed an evolution of care towards a community care paradigm. This is based on two main pillars: first, respect of the human rights ofindividuals with mental disorders; and second, the use of updated interventions andtechniques. In the best cases, this has been translated into a responsible process of de institutionalization, supported by health workers, consumers, family members and other progressive community groups.

Principles of care

The idea of community-based mental health care is a global approach rather than an organizational solution. Community-based care means that the large majority of patients requiring mental health care should have the possibility of being treated at community level. Mental health care should not only be local and accessible, but should also be able to address the multiple needs of individuals. It should ultimately aim at empowerment and use efficient treatment techniques which enable people with mental disorders to enhance their self-help skills, incorporating the informal family social environment as well as formal support mechanisms. Community-based care (unlike hospital-based care) is able to identify resources and create healthy alliances that would otherwise remain hidden and inactivated.

Use of those hidden resources can prevent situations in which discharged patients are abandoned by health services to the care of their unequipped families (with the well-known negative psychosocial consequences and burden for both). It allows for quite effective management of the social and family burden, traditionally alleviated by institutional care. This kind of service is spreading in some European countries, in some states of the United States, in Australia, Canada and China. Some countries in Latin America, Africa, the Eastern Mediterranean, South-East Asia and the Western Pacific have introduced innovative services (WHO 1997b).

Good care, however and wherever it is applied, flows from basic guiding principles, some of which are particularly relevant to mental health care. These are: diagnosis; early intervention; rational use of treatment techniques; continuity of care; wide range of services; consumer involvement; partnership with families; involvement of the local community; and integration into primary health care.

 

Diagnosis and intervention

A correct objective diagnosis is fundamental for the planning of individual care, and for the choice of an appropriate treatment. Mental and behavioural disorders can be diagnosed with a high level of reliability. Since different treatments are indicated for different diseases, diagnosis is an important starting point of any intervention.

A diagnosis can be made in nosological terms (that is, according to an international classification and nomenclature of diseases and disorders), in terms of the type and level of disability experienced by an individual, or preferably in terms of both.

Early intervention is fundamental in preventing progress towards a full-blown disease, in controlling symptoms and improving outcomes. The earlier the institution of a proper course of treatment, the better the prognosis. The importance of early intervention is highlighted by the following examples.

 

• In schizophrenia, the duration of untreated psychosis is proving to be important. Delays in treatment are likely to result in poorer outcomes (McGorry 2000; Tharaet al. 1994).
• Screening and brief interventions for those at high risk of developing alcohol-related problems are effective in reducing alcohol consumption and related harm (Wilk et al. 1997).

The appropriate treatment of mental disorders implies the rational use of pharmacological, psychological and psychosocial interventions in a clinically meaningful, balanced, and well-integrated way. In view of the extreme importance of the ingredients of care, they are dealt with at length later in this chapter.

 

Continuity of care

Some mental and behavioural disorders follow a chronic course, albeit with periods of remission and relapses which may mimic acute disorders. Nevertheless, as far as management is concerned, they are similar to chronic physical illnesses. The chronic care paradigm is therefore more appropriate to them than the one generally used for acute, communicable disease. This has particular implications concerning access to services, staff availability, and costs to patients and families.

The needs of patients and their families are complex and changing, and continuity of care is important. This calls for changes in the way care is currently organized. Some of the measures to ensure continuity of care include:

 

• special clinics for groups of patients with the same diagnosis or problems;
• imparting caring skills to carers;
• the same treatment team providing care to patients and their families;
• group education of patients and their families;
• decentralization of services;
• integration of care into primary health care.

 

Wide range of services

The needs of people with mental illness and their families are multiple and varied and differ at different stages of illness. A wide variety of services are required to provide comprehensive care for some of the people with mental illness. Those recovering from illness need help to regain their skills and resume their roles in society. Those who recover only partially need assistance to compete in an open society. Some patients, especially in developing countries, who have had sub-optimum care can nevertheless benefit from rehabilitation programmes. These services may dispense medication or provide special rehabilitation programmes, housing, judicial assistance or other forms of socioeconomic support.Specialized personnel, such as nurses, clinical psychologists, social workers, occupational therapists and volunteers, have demonstrated their value as intrinsic elements of flexible care teams. Multidisciplinary teams are especially relevant in the management of mental disorders, owing to the complex needs of patients and their families at different points during the illness.

 

Partnerships with patients and families

The emergence of consumer movements in a number of countries has changed the way stakeholders' views are seen. These consumer groups are generally composed of people with mental disorders and their families. In many countries, consumer movements have grown in parallel with traditional mental health advocacy, such as that of family movements. The consumer movement is based on a belief in individual patient choice regarding treatment and other decisions (see Box 3.4).

 

Box 3.4 The role of consumers in mental health care

 

Probably the best example of a consumer movement is Alcoholics Anonymous, which has become popular around the world and has achieved recovery rates comparable to those obtained by formal psychiatric care. The availability of computer-assisted treatment and online support from ex-patients have opened up new ways of getting care. Patients with mental disorders can be very successful in helping themselves, and peer support has been important in a number of conditions for recovery and reintegration into society.

The consumer movement has substantially influenced mental health policy in a number of countries. In particular, it has increased the employment of people with disorders in the traditional mental health system as well as in other social service agencies. For example, in the Ministry of Health of the Province of British Columbia, Canada, the position of Director of Alternative Care was recently assigned to a person with a mental disorder, who is thus in a strong position to influence mental health policy and services.

Consumer advocacy has targeted involuntary treatment, self-managed care, the role of consumers in research, service delivery and access to care. Programmes run by the consumers include drop-in centres, case management programmes, outreach programmes and crisis services.

The positive role of families in mental health care programmes has been recognized relatively recently. The earlier view of the family as a causative factor is not valid. The role of families now extends beyond day-to-day care to organized advocacy on behalf of the mentally ill. Such advocacy has been pivotal in changing mental health legislation in some countries, and improving services and developing support networks in others.

Substantial evidence demonstrates the benefits of involving families in the treatment and management of schizophrenia, mental retardation, depression, alcohol dependence and childhood behaviour disorders. The role of the family in the treatment of other conditions remains to be more firmly established by further controlled trials. There are indications that the outcome for patients living with their families is better than for those in institutions. However, many international studies have established a strong relationship between high "expressed emotion" attitudes in relatives and an increased relapse rate for patients living with them. By changing the emotional atmosphere in the home, the relapse rate can be reduced (Leff & Gamble 1995; Dixon et al. 2000).

Work with families to reduce relapses was always seen as an adjunct to maintenance medication and not as a substitute for it. Indeed, family therapy, when added to antipsychotic medication, has been shown to be more efficacious than medication alone in preventing relapse in schizophrenia. A meta-analysis by the Cochrane Collaboration (Pharaoh et al. 2000) showed relapse rates being reduced on average by half over both one year and two years. The question remains, however, whether ordinary clinical teams can reproduce the striking results of the pioneering research groups which have conducted their work mostly in developed countries. In developing countries, the family is usually involved in the treatment of the individual psychiatric patient, both by traditional healers and biomedical services.

Family networking locally and nationally has brought carers into partnership with professionals (Box 3.5). In addition to providing mutual support, many networks have become advocates, educating the general public, increasing support by policy-makers, and fighting stigma and discrimination.

 

Box 3.5 Partnerships with families

 

 

Involvement of the local community

Societal beliefs, attitudes and responses decide many aspects of mental health care. People with mental illness are members of society, and the social environment is an important determinant of outcome. If the social environment is favourable, it contributes to recovery and reintegration; if negative, it can reinforce stigma and discrimination. Efforts to enhance the involvement of local communities include disseminating accurate information about mental disorders and using community resources for specific initiatives, such as volunteers in suicide prevention and collaboration with traditional healers. Shifting care from institutions to the community itself can alter community attitudes and responses, and help people with mental illness lead a better life.

Studies in many African and Asian countries show that about 40% of the clients of traditional healers suffer from mental illnesses (Saeed et al. 2000). This is not much different from the picture revealed by many studies conducted in general health care settings. Working with traditional healers is thus an important mental health initiative. Professionals give healers accurate information about mental and behavioural disorders, encourage them to function as referral agents, and discourage practices such as starvation and punishment. For their part, professionals come to understand the healers' skills in dealing with psychosocial disorders.

Nongovernmental organizations have been important in mental health movements throughout history. It was a consumer, Clifford Beers, who in 1906 created the first successful nongovernmental organization dealing with mental health, the forerunner of the World Federation for Mental Health. The contributions of these organizations are unquestionable.

There are a number of avenues for bringing about changes in the community. The most important of these is the use of mass media for educational campaigns directed to the general public. "Defeat depression", "Changing minds ­ every family in the land", and the World Health Day 2001 slogan "Stop exclusion ­ Dare to care" are examples. Massive public awareness programmes in countries such as Australia, Canada, India, the Islamic Republic of Iran, Malaysia, the United Kingdom and the United States have changed the attitudes of the population to mental disorders. The World Psychiatric Association (WPA) has launched a programme in a number of countries to fight stigma and discrimination against persons suffering from schizophrenia (see Box 4.9). The programme uses the mass media, schools and family members as change agents.

Although in many developing countries the community does not necessarily discriminate against people with mental illness, beliefs in witchcraft, supernatural forces, fate, ill will of gods and so forth can interfere with seeking help and adherence to treatment. One of the best examples of how communities can become carers of the mentally ill is to be found in the Belgian town of Geel, the site of what is undoubtedly the oldest community mental health programme in the western world. Since the 13th century, and originating perhaps as early as the 8th century, severely mentally ill people have been welcomed by the Church of St Dympha or by foster families in the town, with whom they have lived, often for several decades. Today, such families in Geel care for some 550 patients, about half of whom have jobs in sheltered workshops.

< Prev		Next >