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The Perceptions and Experiences of Discrimination of People with Mental Illness in Hong Kong
26/11/2002
Introduction
A study (Study) of the perceptions and experiences of discrimination of 757 persons with mental illness in Hong Kong was jointly conducted by the Equal Opportunities Commission (EOC), the Department of Psychiatry of The Chinese University of Hong Kong and the Department of Social Work of Baptist University. It focused on the first-hand experience and perception of discrimination of respondents coming from 28 halfway houses and a public psychiatric outpatient clinic. The term, Mental Health Service Users, is used in the Study as a collective description of the respondents but the experiences and perceptions relating to discrimination are not confined to medical treatment and health care. The Study covers multiple domains of life, such as work, family and social relationships in addition to medical treatment and health care.
The results show that more than 65% of the respondents rate the psychiatric staff of psychiatric wards as "good" or "very good". It should be emphasized that the Study profiles the perceptions of the respondents only and covers significant periods of time, in some cases, decades. The perceptions described must, therefore, be taken in context.(1) This Study does not canvass the clinical reasons for specific treatment or care and no judgment is made or intended regarding these decisions. Against this background, the Study was conducted,
First, to gauge the cumulative impact of these experiences on the individual respondents as regards their perspectives and difficulties in multiple domains in life; and
Second, to document the perspectives of the demand side as distinct from the supply side of service providers, including health service providers, so as to better define users’ participation in the healing process.
Stigmatization
Of the many vulnerable groups in Hong Kong, perhaps those with mental illness form the most misunderstood group. They are generally perceived to be violent, suicidal, unpredictable and incapable of rational decision. Stigmatization has resulted in alienation of those with mental illness from the community when acceptance and inclusion are most needed to promote wellness. Doubts regarding their decision-making abilities have also made them vulnerable to possible non-consensual medical treatment and confinement.
Coordinated and Holistic Approach
This Study shows that stigmatization attached to mental illness can be regarded as worse than having the illness itself. Typically there is a history of concealment and social exclusion which prevents early detection and timely treatment. To counter stigmatization, a committed and coherent program of education, support and redress is necessary. Such a program must encompass the promotion of community and family care, and the respect for the rights of the mentally ill. The well being of the mentally ill and the realization of their rights require acceptance of the community as well as the entrenchment of their rights in law and the recognition of these rights as enforceable values by the institutions providing services to them.
This Study provides an in-depth understanding on the perception and experience of discrimination, stigmatization and alienation faced by persons with mental illness. Through this Study we hope to increase the public's understanding of the plight of the mentally ill. This Study is but a first step and must be followed by larger studies on the provision of medical and health care services to those with mental illness, their legal position and the perception of the public.
Mental illness can affect one in five of our population at different times, in different forms and with varying degrees of severity. Mental health in times of economic downturn is of particular concern. The success of mental health care services hinges on many factors – public acceptance; effective health service; availability of effective medication; accessibility to support and legal services, provision of occupational, vocational and rehabilitation services; etc. Although many of these are beyond the remit of the work of the EOC, they are inter-related and require a coordinated and holistic approach.
Mental Health Council
The Study makes a number of important recommendations, of which, the key is the establishment by government of a Mental Health Council as a multi-disciplinary and cross sectorial body to coordinate policy formulation, program delivery, research and public education in the area of mental health and to safeguard the rights of those with mental illness. We support this recommendation and request its consideration by the Health, Welfare and Food Bureau.
EOC's WORK RELATED TO MENTAL ILLNESS
Up to 30 September 2002, 16% (290) of the complaints lodged under the Discrimination Disability Ordinance were related to mental illness(2). 192 (66%) of these complaints were in the employment field involving job arrangement, hire and fire (154), harassment in work place by co-workers (35) and victimization (3). The remaining 98 (34%) were in the non-employment field relating to discriminatory treatment (70), harassment (19) and victimization (2) in the course of provision of goods and services, and vilification (7). Among the service-related complaints, 2 were on taking out of insurance policies, 28 on health/dental care service, 7 on education. The figures do not represent the actual situation as aggrieved persons are reluctant to lodge complaints out of fear that revealing their identity can draw further stigmatization or lack the skill or knowledge to lodge and handle complaints.
Completed programmes relating to mental illness are described in the Annex. A further discussion paper on the health and legal rights of those with mental illness is under preparation and we highlight several areas under study below.
Human Rights and Medical Ethics
There has been a coming together of the fields of human rights and medical ethics. Patient/clinician relationships are changing. Increasingly they are being defined according to human rights standards and to provide for maximum personal autonomy. Models of best practices now include principles such as the rights to best available treatment, to give or withhold consent, to privacy, to information, to advocacy, to appeal compulsory treatment orders and to the use of least restrictive alternatives where compulsion is needed.
The Hospital Authority states that the Patients' Charter is designed to inform patients of their rights and responsibilities, leading to the development of beneficial relationships with healthcare providers, and by doing so enhance the effectiveness of the health care process. This statement reflects an understanding that recognition of human rights complements other elements of health care.
The Mental Health Ordinance (Cap. 136) provides to a patient the right to see a District Court judge or a magistrate before a compulsory order is made. The Hospital Authority, in response to the concerns that we raised, has from 10 September 2001 made arrangements whereby patients who are admitted involuntarily to a mental hospital under s. 31 of the Mental Health Ordinance are informed of their right to see a District Court judge or magistrate.
After commencement of the new arrangements, a total of 513 patients were admitted to mental hospitals under s. 31 of the Mental Health Ordinance between 10 September 2001 to 9 December 2001. 109 patients requested to see a District Court judge or a magistrate and out of this, 11 were not ordered by the District Court judge or magistrate to be admitted to a mental hospital. This snapshot serves to highlight how the system is working and no implication is drawn or intended as regards the clinical decisions taken in the 11 cases referred to.
Human Rights and Legal Rights
The upholding of the human rights of those with mental illness depend on the availability and accessibility of advice, advocacy, representation and redress to those with mental illness. Without advocacy and representation, it is unlikely that many would feel able to pursue their rights as they usually lack the skill or the capacity to seek redress.
THE PROBLEMS UNCOVERED BY THIS STUDY
Those Affected
For many respondents, living with social stigma was an overwhelming experience. They were being evaluated against unfounded myths. Social stigma eroded a person's confidence, resulting in low esteem, self-stigmatization and concealment of the condition and deprived them of their dignity and participation in life.
The double disadvantage faced by women with mental illness was also evident. The World Health Organization Report of 2001 points out that the multiple roles that women are expected to fulfill, as wives, mothers and carers of other family members, put them at greater risk of experiencing mental disorders. Twice as many women suffer from depression as men.
Detection and Treatment
The average mental patient in Hong Kong seeks treatment from a psychiatrist two years from the onset of symptoms(3). The lack of general awareness of mental illness and fear of stigmatization are the major causes of delay in seeking treatment among many respondents.
Raising the awareness level of the public and the medical profession can help improve early detection, assessment and intervention. Making mental health treatment more available in primary care clinics and reducing the segregation between general and specialist care where practicable can help to increase detection and reduce the labeling effect feared by many. For those who are in employment and have difficulty taking leave to attend follow-up treatment in daytime, extending outpatient service beyond office hours will also help to accommodate their needs.
Support to Family
The family remains the principal source of support for many individuals. However, the present survey shows that family members can also be a source of stigmatization. A sense of frustration and helplessness on the part of family members often arise from misunderstanding the illness and the needs of the mentally ill. Families need to be educated in the knowledge and skill for caring of individuals with mental illness. Community and professional support to families, such as parenting skill and group counseling, is essential to create a wider community-based care system. Respite and carer services, as recommended in the Study, are useful in relieving families that are temporarily unable to attend to their family members with mental illness.
Evidence-based and Customer-centered Approach
Some respondents reported unhappy experiences with health care workers in the treatment process. These represented the perception of the respondent only and there could be clinical justification for the ways things were handled at the material time. Nevertheless, there are allegations of illness of a physical nature being regarded as a mental problem. These areas should be carefully considered to see if they resulted from any stereotypical assumptions in the course of providing health care services.
New Drugs
Four dimensions need to be considered in respect of the right to health: availability, accessibility, acceptability and quality of service and care.
While recognizing every psychiatric drug may have its side effects, as reported by the respondents, the conventional drugs create greater disruption to the daily activities of an individual. Medication represents only a small part of the total treatment cost of serious illness. The greater acquisition cost of the new generation psychiatric drugs is more than compensated by the decrease in clinical care (e.g. the shorter duration of hospitalization) and other indirect costs (e.g. unemployment benefits and longer rehabilitation process). More fundamentally these drugs create fewer side effects making those with mental illness less of a hostage to stigmatization which leads to concealment and non-treatment.
In the year 2001-2002, the Government provided additional funding to 2500 patients with new psychiatric drugs. The effectiveness of the scheme should be evaluated and made public.(4)
------------------------------------------------
(1) There have been improvements in medical services over the years and that there could be clear clinical reasons for specific treatment or care.
(2) Among the complaints, 14% are still under investigation, 56% discontinued for various reasons provided under the DDO, 15% conciliated successfully, 13% conciliation unsuccessful, 3% reached an early resolution.
(3) An experience revealed by the Secretary of Health and Welfare in his speech delivered at the MINDSET Initiative on 21 June 2002.
(4) This information is important. Under the drug prescription scheme now put on trial by the Hospital Authority New Territories East Cluster, new generation psychiatric drugs is considered as 'non-essential' drugs that has to be bought from community pharmacy. According to the Hospital Authority, the three guiding principles in classifying non-essential drugs are: (1) drugs without comprehensive evidence base in its treatment effects; (2) drugs with comparatively less side effects, of marginally better efficacy but the cost is extremely high; and (3) life style drugs such as slimming pills or those drugs purely for preventive uses. (Hospital Authority Press Release dated 21.8.2002)
In some countries, new generation psychiatric drugs are now recommended to be prescribed as first-line treatment for schizophrenia. For example, in UK, it is recommended that new generation psychiatric drugs be considered in the choice of first-line treatments for individuals with newly diagnosed schizophrenia, and for individual currently receiving old drugs and experiencing unacceptable side effects. In Malaysia, new generation psychiatric drugs are on the national formulary list. Physicians are allowed to prescribe them as first-line treatment. In Korea, some new generation psychiatric drugs can be prescribed as first-line treatment. In Taiwan, the former restrictions imposed on doctors in prescribing second-generation psychiatric drugs has recently been lifted and doctors can prescribe new drugs under the national health insurance scheme without having the patients try out the typical drugs in the first place.
Enquiry: EOC Hotline 25118211
A study (Study) of the perceptions and experiences of discrimination of 757 persons with mental illness in Hong Kong was jointly conducted by the Equal Opportunities Commission (EOC), the Department of Psychiatry of The Chinese University of Hong Kong and the Department of Social Work of Baptist University. It focused on the first-hand experience and perception of discrimination of respondents coming from 28 halfway houses and a public psychiatric outpatient clinic. The term, Mental Health Service Users, is used in the Study as a collective description of the respondents but the experiences and perceptions relating to discrimination are not confined to medical treatment and health care. The Study covers multiple domains of life, such as work, family and social relationships in addition to medical treatment and health care.
The results show that more than 65% of the respondents rate the psychiatric staff of psychiatric wards as "good" or "very good". It should be emphasized that the Study profiles the perceptions of the respondents only and covers significant periods of time, in some cases, decades. The perceptions described must, therefore, be taken in context.(1) This Study does not canvass the clinical reasons for specific treatment or care and no judgment is made or intended regarding these decisions. Against this background, the Study was conducted,
First, to gauge the cumulative impact of these experiences on the individual respondents as regards their perspectives and difficulties in multiple domains in life; and
Second, to document the perspectives of the demand side as distinct from the supply side of service providers, including health service providers, so as to better define users’ participation in the healing process.
Stigmatization
Of the many vulnerable groups in Hong Kong, perhaps those with mental illness form the most misunderstood group. They are generally perceived to be violent, suicidal, unpredictable and incapable of rational decision. Stigmatization has resulted in alienation of those with mental illness from the community when acceptance and inclusion are most needed to promote wellness. Doubts regarding their decision-making abilities have also made them vulnerable to possible non-consensual medical treatment and confinement.
Coordinated and Holistic Approach
This Study shows that stigmatization attached to mental illness can be regarded as worse than having the illness itself. Typically there is a history of concealment and social exclusion which prevents early detection and timely treatment. To counter stigmatization, a committed and coherent program of education, support and redress is necessary. Such a program must encompass the promotion of community and family care, and the respect for the rights of the mentally ill. The well being of the mentally ill and the realization of their rights require acceptance of the community as well as the entrenchment of their rights in law and the recognition of these rights as enforceable values by the institutions providing services to them.
This Study provides an in-depth understanding on the perception and experience of discrimination, stigmatization and alienation faced by persons with mental illness. Through this Study we hope to increase the public's understanding of the plight of the mentally ill. This Study is but a first step and must be followed by larger studies on the provision of medical and health care services to those with mental illness, their legal position and the perception of the public.
Mental illness can affect one in five of our population at different times, in different forms and with varying degrees of severity. Mental health in times of economic downturn is of particular concern. The success of mental health care services hinges on many factors – public acceptance; effective health service; availability of effective medication; accessibility to support and legal services, provision of occupational, vocational and rehabilitation services; etc. Although many of these are beyond the remit of the work of the EOC, they are inter-related and require a coordinated and holistic approach.
Mental Health Council
The Study makes a number of important recommendations, of which, the key is the establishment by government of a Mental Health Council as a multi-disciplinary and cross sectorial body to coordinate policy formulation, program delivery, research and public education in the area of mental health and to safeguard the rights of those with mental illness. We support this recommendation and request its consideration by the Health, Welfare and Food Bureau.
EOC's WORK RELATED TO MENTAL ILLNESS
Up to 30 September 2002, 16% (290) of the complaints lodged under the Discrimination Disability Ordinance were related to mental illness(2). 192 (66%) of these complaints were in the employment field involving job arrangement, hire and fire (154), harassment in work place by co-workers (35) and victimization (3). The remaining 98 (34%) were in the non-employment field relating to discriminatory treatment (70), harassment (19) and victimization (2) in the course of provision of goods and services, and vilification (7). Among the service-related complaints, 2 were on taking out of insurance policies, 28 on health/dental care service, 7 on education. The figures do not represent the actual situation as aggrieved persons are reluctant to lodge complaints out of fear that revealing their identity can draw further stigmatization or lack the skill or knowledge to lodge and handle complaints.
Completed programmes relating to mental illness are described in the Annex. A further discussion paper on the health and legal rights of those with mental illness is under preparation and we highlight several areas under study below.
Human Rights and Medical Ethics
There has been a coming together of the fields of human rights and medical ethics. Patient/clinician relationships are changing. Increasingly they are being defined according to human rights standards and to provide for maximum personal autonomy. Models of best practices now include principles such as the rights to best available treatment, to give or withhold consent, to privacy, to information, to advocacy, to appeal compulsory treatment orders and to the use of least restrictive alternatives where compulsion is needed.
The Hospital Authority states that the Patients' Charter is designed to inform patients of their rights and responsibilities, leading to the development of beneficial relationships with healthcare providers, and by doing so enhance the effectiveness of the health care process. This statement reflects an understanding that recognition of human rights complements other elements of health care.
The Mental Health Ordinance (Cap. 136) provides to a patient the right to see a District Court judge or a magistrate before a compulsory order is made. The Hospital Authority, in response to the concerns that we raised, has from 10 September 2001 made arrangements whereby patients who are admitted involuntarily to a mental hospital under s. 31 of the Mental Health Ordinance are informed of their right to see a District Court judge or magistrate.
After commencement of the new arrangements, a total of 513 patients were admitted to mental hospitals under s. 31 of the Mental Health Ordinance between 10 September 2001 to 9 December 2001. 109 patients requested to see a District Court judge or a magistrate and out of this, 11 were not ordered by the District Court judge or magistrate to be admitted to a mental hospital. This snapshot serves to highlight how the system is working and no implication is drawn or intended as regards the clinical decisions taken in the 11 cases referred to.
Human Rights and Legal Rights
The upholding of the human rights of those with mental illness depend on the availability and accessibility of advice, advocacy, representation and redress to those with mental illness. Without advocacy and representation, it is unlikely that many would feel able to pursue their rights as they usually lack the skill or the capacity to seek redress.
THE PROBLEMS UNCOVERED BY THIS STUDY
Those Affected
For many respondents, living with social stigma was an overwhelming experience. They were being evaluated against unfounded myths. Social stigma eroded a person's confidence, resulting in low esteem, self-stigmatization and concealment of the condition and deprived them of their dignity and participation in life.
The double disadvantage faced by women with mental illness was also evident. The World Health Organization Report of 2001 points out that the multiple roles that women are expected to fulfill, as wives, mothers and carers of other family members, put them at greater risk of experiencing mental disorders. Twice as many women suffer from depression as men.
Detection and Treatment
The average mental patient in Hong Kong seeks treatment from a psychiatrist two years from the onset of symptoms(3). The lack of general awareness of mental illness and fear of stigmatization are the major causes of delay in seeking treatment among many respondents.
Raising the awareness level of the public and the medical profession can help improve early detection, assessment and intervention. Making mental health treatment more available in primary care clinics and reducing the segregation between general and specialist care where practicable can help to increase detection and reduce the labeling effect feared by many. For those who are in employment and have difficulty taking leave to attend follow-up treatment in daytime, extending outpatient service beyond office hours will also help to accommodate their needs.
Support to Family
The family remains the principal source of support for many individuals. However, the present survey shows that family members can also be a source of stigmatization. A sense of frustration and helplessness on the part of family members often arise from misunderstanding the illness and the needs of the mentally ill. Families need to be educated in the knowledge and skill for caring of individuals with mental illness. Community and professional support to families, such as parenting skill and group counseling, is essential to create a wider community-based care system. Respite and carer services, as recommended in the Study, are useful in relieving families that are temporarily unable to attend to their family members with mental illness.
Evidence-based and Customer-centered Approach
Some respondents reported unhappy experiences with health care workers in the treatment process. These represented the perception of the respondent only and there could be clinical justification for the ways things were handled at the material time. Nevertheless, there are allegations of illness of a physical nature being regarded as a mental problem. These areas should be carefully considered to see if they resulted from any stereotypical assumptions in the course of providing health care services.
New Drugs
Four dimensions need to be considered in respect of the right to health: availability, accessibility, acceptability and quality of service and care.
While recognizing every psychiatric drug may have its side effects, as reported by the respondents, the conventional drugs create greater disruption to the daily activities of an individual. Medication represents only a small part of the total treatment cost of serious illness. The greater acquisition cost of the new generation psychiatric drugs is more than compensated by the decrease in clinical care (e.g. the shorter duration of hospitalization) and other indirect costs (e.g. unemployment benefits and longer rehabilitation process). More fundamentally these drugs create fewer side effects making those with mental illness less of a hostage to stigmatization which leads to concealment and non-treatment.
In the year 2001-2002, the Government provided additional funding to 2500 patients with new psychiatric drugs. The effectiveness of the scheme should be evaluated and made public.(4)
------------------------------------------------
(1) There have been improvements in medical services over the years and that there could be clear clinical reasons for specific treatment or care.
(2) Among the complaints, 14% are still under investigation, 56% discontinued for various reasons provided under the DDO, 15% conciliated successfully, 13% conciliation unsuccessful, 3% reached an early resolution.
(3) An experience revealed by the Secretary of Health and Welfare in his speech delivered at the MINDSET Initiative on 21 June 2002.
(4) This information is important. Under the drug prescription scheme now put on trial by the Hospital Authority New Territories East Cluster, new generation psychiatric drugs is considered as 'non-essential' drugs that has to be bought from community pharmacy. According to the Hospital Authority, the three guiding principles in classifying non-essential drugs are: (1) drugs without comprehensive evidence base in its treatment effects; (2) drugs with comparatively less side effects, of marginally better efficacy but the cost is extremely high; and (3) life style drugs such as slimming pills or those drugs purely for preventive uses. (Hospital Authority Press Release dated 21.8.2002)
In some countries, new generation psychiatric drugs are now recommended to be prescribed as first-line treatment for schizophrenia. For example, in UK, it is recommended that new generation psychiatric drugs be considered in the choice of first-line treatments for individuals with newly diagnosed schizophrenia, and for individual currently receiving old drugs and experiencing unacceptable side effects. In Malaysia, new generation psychiatric drugs are on the national formulary list. Physicians are allowed to prescribe them as first-line treatment. In Korea, some new generation psychiatric drugs can be prescribed as first-line treatment. In Taiwan, the former restrictions imposed on doctors in prescribing second-generation psychiatric drugs has recently been lifted and doctors can prescribe new drugs under the national health insurance scheme without having the patients try out the typical drugs in the first place.
Enquiry: EOC Hotline 25118211
