Advocacy in mental health

The COVID-19 pandemic has marked a turning point, moving mental health up the list of global health priorities. As countries worldwide are struggling to rebuild their damaged economies, they are slowly accepting the reality of the financial toll of mental ill-health in their citizens.

The past several months have also seen people with mental health conditions experiencing even greater social isolation than before, and given the circumstances, it is expected that the need for mental health and psychosocial support will substantially increase in the coming months and years. With this concern in projection, the World Federation for Mental Health set the theme for World Mental Health Day 2020 as “ Mental Health for All: Greater Investment– Greater Access.”

But what is the need for greater access and greater investment in mental health?.

Figures show that from addiction to dementia to schizophrenia, almost 1 billion people worldwide suffer from a mental disorder. Lost productivity as a result of two of the most common mental disorders, anxiety, and depression, costs the global economy US$ 1 trillion each year. In 2010, poor mental health was estimated to cost the world economy approximately $2·5 trillion per year in poor health and reduced productivity, with a cost projected to rise to $6 trillion by 2030.

In India, the situation is extremely alarming. The National Mental Health Survey which was conducted by NIMHANS and funded by Ministry of Family and Health, New Delhi, revealed that of the 138 crore population of India, at any time, 10% (13.8 crore) of the population has mental illness, and 0.8% (1 crore) of the population is suffering from a severe mental illness. And when we keep in mind that it is just not one individual, but the whole family who gets affected this then means, if one person is severely ill, the whole family goes through the turmoil. It is not just one crore, but it is one crore families in India who need urgent help.

This leads to the next important question of availability of services. Do we have the resources and infrastructure to meet this demand of one crore Indian families? We know the treatment gap, which is the number of people who are diagnosed with mental illness but are not on treatment, is 70%–86% in India. Hence, only 15% are receiving treatment. The reasons are many, from lack of awareness of mental health issues, very low number of mental health professionals, inadequate access to treatment and supply of medicines, to stigma, discrimination, and prejudices. This treatment gap is huge in a progressing nation, and this needs to be closed at the earliest. We have only 1 psychiatrist per 100,00 population and we need 1 in 200. This is the reason for the need for investment, this is the need for access to mental health care.

In 2019, the Ministry of Justice and Social Empowerment, in collaboration with AIIMS, came up with statistics about the magnitude of substance use in India. The figures are staggering – 16 crore of population use alcohol of which 5.7 crore are problematic users and 2.9 crore is dependent on alcohol. This once again means 2.9 crore families are being affected. Figures for cannabis and opioid users are 3.1 crore and 2.3 crore, respectively.

Suicide is another burning issue, and figures published by the National Crime Records Bureau in 2019 revealed that annually, 139,123 committed suicide, which means there are 381 completed suicide every day. This translates to 16 suicides every hour and 1 suicide every 225 s. And for every completed suicide, there are 20 more who have attempted, which means every day, there are 7620 families affected by a person at home who tries to commit suicide.

Mental Healthcare Act 2017 in Section 18 outlines the right to access mental health care. Every citizen of our country should have access to outpatient service, inpatient service, support for families with mental disorders, rehabilitation services, services for children and elderly, and easy access to medications.

Yet, despite substantial advances in research, delivery at scale and translation into real-world benefits have been slow. The costs involved in mental health care are many and can involve social services, primary, secondary, and tertiary care. In addition to direct intervention costs, expenditure can be expected to cover facilities, staff, administration, management, training, supervision, advocacy, and outreach activities. The diversity of services and care providers can complicate estimates of national mental health expenditure. Globally, it is recognized that investment in mental health has not matched this rising global awareness of the scale of the problem in recent years. The campaign slogan – “Move for mental health: Let's invest” – calls the world to action and, for the first time, will be accompanied by a global online advocacy event.

Therefore in my Presidential Speech, I reiterate that the need for the hour is to advocate for mental health care. This is a reality for citizens around the world and everybody should have access to mental health care even if they are living in a remote or poor place. We need to foster partnerships with government agencies, academic institutions, private sectors, financial institutions, and civil society organizations to mobilize, disburse, and invest funds to transform mental health and make it accessible for one and all.

WHAT IS ADVOCACY

The concept of mental health advocacy has been developed to promote the human rights of persons with mental disorders and to reduce stigma and discrimination. It consists of various actions aimed at changing the major structural and attitudinal barriers to achieving positive mental health outcomes in populations.

Advocacy in this field began more than 30 years ago when the families of people with mental disorders first made their voices heard. People with mental disorders then added their own contributions. Gradually, these people and their families were joined and supported by a range of organizations, many mental health workers and their associations, and some governments. Recently, the concept of advocacy has been broadened to include the needs and rights of persons with mild mental disorders and the mental health needs and rights of the general population.

Advocacy is considered to be one of the 11 areas for action in any mental health policy because of the benefits that it produces for people with mental disorders and their families. The advocacy movement has substantially influenced mental health policy and legislation in some countries and is believed to be a major force behind the improvement of services in others (World Health Organization).

The concept of advocacy contains the following principal elements – Advocacy for Mental Health, 2003 (World Health Organization).

“1. Advocacy actions 2. Awareness-raising 3. Information 4. Education 5. Training 6. Mutual help 7. Counselling 8. Mediating 9. Defending 10. Denouncing.

There are many barriers that have been recognized

• Lack of mental health services

• Unaffordable cost

• Lack of parity between mental health and physical health

• Poor quality of care in mental hospitals and other psychiatric facilities

• Right to self-determination and need for information about treatments

• Need for services to facilitate active community participation

• Violations of human rights of persons with mental disorders

• Lack of housing and employment for persons with mental disorders

• Stigma associated with mental disorders, resulting in exclusion

• Absence of promotion and prevention in schools, workplaces, and neighbourhoods

• Insufficient implementation of mental health policy, plans, programmes and legislation.”

CONCEPT OF MENTAL HEALTH ADVOCACY

Advocacy is considered to be one of the 11 areas for action in any mental health policy because of the benefits that are produced for consumers and families. There are different types of advocacy actions: the raising of awareness, the dissemination of information, education, training, mutual help, counseling, mediating, defending, and denouncing. These actions are aimed at reducing barriers such as lack of mental health services, stigma associated with mental disorders, violation of patients’ rights, absence of promotion, and lack of housing and employment. Reducing these barriers can help by improving policy, laws, and services; promoting the rights of persons with mental disorders; promoting mental health; and preventing disorders.[1]

IMPORTANCE OF MENTAL HEALTH ADVOCACY

The emergence of mental health advocacy movements in several countries such as Australia, Europe, Canada, USA, and New Zealand has helped to change society's perceptions of persons with mental disorders. Service users have begun to articulate their own visions of the services they need. They are increasingly able to make informed decisions about treatment and other matters in their daily lives. Patient and family participation in advocacy organizations have several positive outcomes like improvements in the policies and practices of governments and institutions, changes in laws and government regulations, improvements in the promotion of mental health and the prevention of mental disorders, protection and promotion of the rights and interests of persons with mental disorders and their families, and improvements in mental health services, treatment, and care among others.

Advocacy is an important means of raising awareness on mental health issues and ensuring that mental health is on the national agenda of governments. Advocacy can lead to improvements in policy, legislation, and service development.

It goes without saying that one of the major reasons why advocacy is absolutely vital is the need for the worldwide battle against stigma.

WHAT IS STIGMA?

Stigma is something about a person that causes her or him to have a deeply compromised social standing, a mark of shame or discredit. Many persons with serious mental disorders appear to be different because of their symptoms or the side effects of their medication. Other people may notice the differences, fail to understand them, feel uncomfortable about the persons affected, and act in a negative way toward them.

There are many common misconceptions about people with mental disorders as they are often referred to as lazy, unpredictable, unintelligent, unreliable, worthless, irresponsible, untreatable, unsafe to be with, violent, incompetent to marry and raise children, out of control, unable to work, always in need of supervision, increasingly unwell throughout life, possessed by demons, in need of hospitalization, recipients of divine punishment, and others.

These misconceptions lead to unwillingness of persons with mental disorders to seek help; cause isolation and difficulty in making friends; damage to self-esteem and self-confidence; be denied of adequate housing, loans, health insurance, and jobs because of mental disorders; have an adverse effect on the evolution of mental disorders and disability; and result in families being more socially isolated and have increased levels of stress.

We need to take a wide range of actions to fight stigma.

1. Community awareness and education

2. Sensitizing teachers and health workers for mental health issue

3. Psychoeducation for patients and families

4. Empowerment of patients and family organizations

5. Improvement of mental health services (quality, access, deinstitutionalization, and community care)

6. Legislation on the rights of persons with mental disorders

7. Education of persons working in the mass media, aimed at changing stereotypes and misconceptions about mental disorders !.

ROLES OF DIFFERENT GROUPS IN ADVOCACY

1. Patients and families – Patients have played various roles in advocacy, ranging from influencing policies and legislation to providing concrete help for persons with mental disorders. The provision of care for persons with mental disorders is a distinctive role for families, particularly in developing countries. In many places, they are the primary care providers and their organizations are fundamental as support networks. In addition to providing mutual support and services, many family groups have become advocates, educating the community, increasing the support obtained from policy-makers, denouncing stigma and discrimination, and fighting for improved services

2. Nongovernmental organizations involving mental health professionals, or people from diverse fields fulfill many of the advocacy roles described for patients and families. Their distinctive contribution to the advocacy movement is that they support and empower patients and families

3. General health workers and mental health workers have taken a more active role in protecting patients’ rights and raising awareness for improved services, where care has been shifted from psychiatric hospitals to community services. Some specific advocacy roles for mental health workers relate to clinical work from a patient and family perspective and planning and participation in the activities of patients and family groups

4. Policy-makers and planners in the ministries of health play an important role in advocacy either by direct actions to influence the mental health of populations or working indirectly through supporting advocacy groups (patients, families, nongovernmental organizations, mental health workers), convincing other policy-makers and planners, e.g., the executive branch of government, the ministry of finance and other ministries, the judiciary, the legislature and political parties, to focus on and invest in mental health.

BARRIERS FORESEEN

Barriers foreseen are lack of support from the general population and sometimes conflict between different groups. Sometimes, carers such as psychiatrists and patients carer groups are on opposite side of the fence instead of collaborating.

PROPOSED ADVOCACY PLANS

1. Making brief documents identifying the priority areas in mental health

2. Identify one or two psychiatric services with the best practices in the country and negotiate a joint demonstration project. This should involve the ministry of health and the psychiatric services. It should have the goal of forming consumer groups and/or family groups with advocacy functions. Technical support and funding are necessary

3. Identify and collaborate with one or two stakeholder groups interested in the rights of people with mental disorders

4. Empower the advocacy groups by providing them with information, training, and funding and focus on consumer organizations.

   1. Collaborate with government agencies for formulating the plans
   2. Conduct campaigns, for example, using radio and leaflets, to inform the population about the advocacy group.

CONCLUSION

The development of an advocacy movement could facilitate the implementation of mental health policy and legislation, and populations could receive many benefits. The needs of persons with mental disorders could be better understood and their rights could be better protected. They could receive services of improved quality and could participate actively in their planning, development, monitoring, and evaluation. Families could be supported in their role as carers, and populations at large could gain an improved understanding of mental health and disorders.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.