Sehnaz Layikel

Şehnaz Layıkel’s Initiative for Human Rights in Mental Health (RUSIHAK) model empowers individuals with mental disabilities and their families by helping them become decision-makers, bringing full citizenship to a strategically important group that has too often faced systematic discrimination, social isolation, and poor quality of life.

RUSIHAK was established in 2006 when Şehnaz, a trained clinical psychologist, gathered a group of mentally disabled people and their families together. She realized that the social isolation and lack of access to quality health services they experience represents only the tip of the iceberg: their experience is the result of a set of complex relationships in which people with mental disabilities are not perceived fully as citizens with rights.

Şehnaz was inspired to create a new approach for the mental health field in Turkey; previously dominated by self-help patient groups and psychiatrists associations. Şehnaz’s approach intervenes at three critical points: (i) establishing communities of resistance in mental health institutions (ii) connecting them to a civil monitoring system that creates the outline for the first mental health rights movement in Turkey, and (iii) acting as an intermediary platform that channels its know-how toward reforming outdated laws and dysfunctional institutions.

Within seven years, RUSIHAK has become the first private initiative in Turkey to (i) enter public mental health institutions and open space for democratic decision-making (ii) systematically monitor and report on their conditions and operations from a human rights perspective, and (iii) provide scientific data on the mental health field to inform policymaking at the national level. Most importantly, RUSIHAK places the responsibility to change the mental health system in the hands of people who are “experts by experience:” individuals and their families who have been users and survivors of psychiatric treatments. Because these affected individuals comprise the majority of the staff and management of RUSIHAK, Şehnaz’s organization becomes living proof of the abilities and unrealized potential of the mentally ill.

RUSIHAK’s goal is to overturn the system of top-down medical intervention that continues to dominate the mental health field in Turkey. Her vision is a diverse, comprehensive system that respects the dignity of the patients and prioritizes their full integration and empowerment, rather than isolation from public life.

Mental, neurological, and behavioral disorders cause immense suffering and staggering economic and social costs. People with mental disorders are often subjected to social isolation, poor quality of life, and higher death rates. Turkey is no exception. Although there is no detailed statistical information about people with mental disabilities in Turkey, several sources including the World Health Organization (WHO) refer to statistics of at least 1.5 million people with psychiatric problems and 1 million people with developmental disabilities, such as mental retardation. By factoring in the families of these people, the population affected by mental disabilities triples.

People with mental disabilities are among the most vulnerable groups in Turkey. General discrimination and stigmatization in the community, as well as insufficient policies and services, leave them socially excluded and without access to key services. In Turkey, only 20 percent of individuals with mental disabilities are able to access some form of treatment. Many live deprived of their basic human rights, such as housing, employment, and social security, and are thus dependent on others to determine their futures. The conditions are significantly worse for those from disadvantaged communities, especially women and children from families of low socioeconomic status.

Turkey’s approach to mental healthcare has been primarily dependent on regional “depot hospitals” that serve twelve to eight-teen provinces at one time. There are only eight of such hospitals in the entire country. As a result, some of the largest host over 15,000 patients a year, averaging 500 outpatients a day. RUSIHAK’s monitoring report covering these hospitals and their rehabilitation centers stresses human rights abuses in a multitude of areas such as the right to proper treatment, rehabilitation conditions and methods, the right to informed consent, the right to mobility and humane conditions of detention such as hygiene, care, and access to personal belongings.

RUSIHAK’s monitoring also reports insufficient diagnosis and treatment services, such as when a psychiatrist sees an average of forty to fifty patients every day. The time spared for a patient is limited to 5 to 10 minutes, leaving room for no other service beyond prescribing drugs and arranging dosage and frequency. In the absence of community-based services that provide support to people with mental disabilities and their families in their social environments, people stay in institutions for prolonged periods of time and must return to the institutions very often, as there are no follow-up services available.

As such, current state resources fall short due to their paternalistic nature, scarcity and one-size-fits-all approach, while current civil society interventions do not go much beyond self-sustaining patient family groups. There is a great need for interventions in the mental health field that approach the issue though a professional, progressive, and rights-based approach to ensure social inclusion of the mentally disabled population.

RUSIHAK works at three levels to improve the treatment and well-being of the mentally ill in Turkey: (i) individual (ii) institutional and (iii) policy levels.

On the individual level, RUSIHAK manages the country’s first and only telephone hotline offering pro bono consultancy to individuals and their families about their legal rights and employment opportunities. The hotline also serves RUSIHAK to collect strategic cases to set examples and create awareness around them. While they received around 300 applications a year RUSIHAK reports a decrease in calls in recent months as individuals now have access to cases, reports, and materials to help them make more informed choices. RUSIHAK is exploring the idea of bringing the hotline’s target audience together in “empowerment groups” where fifteen to twenty people gather, identify common goals, and pursue them collectively.

RUSIHAK has also established the first patient council in Turkey’s leading public mental hospital, serving over 15,000 patients every year and disseminating the norms and procedures of mental health to other hospitals. The council meets once a week at the hospital and functions like an open town hall meeting, its size ranging between 10 to 100 patients, with an average of twenty core members. Previously led and facilitated by RUSIHAK, it is transitioning to be completely managed by the patients.

Within one year, RUSIHAK has significantly transformed the relationships that existed between hospital staff and patients. Where silent acceptance and learned helplessness were previously the prevailing attitudes, now trust and positive values are transmitted through this micro-society that is managed by patients, medical experts, and hospital management. The result is improved living conditions for patients, including better meals, more recess time, less medication, and a more manageable, efficient health institution. Supported by the hospital administration and Ministry of Health, RUSIHAK is preparing to scale the patient councils to the remaining seven hospitals.

On the institutional level, lessons learned from the council experience are connected to a civil monitoring system that is formed by psychiatrists, lawyers, and other “experts by experience.” Through the monitoring system, implementation problems and rights violations are identified and translated into policy language. Crosscutting all these levels is the principle that all this work is done by and for the people and families that have been affected by mental health.

RUSIHAK also achieved significant impact on the policy level when its draft for a social policy on mental health (previously non-existent) was accepted by the Ministry of Health in 2011. It is currently pushing for the implementation of the action plan that will establish 20,000 community mental health centers that will largely replace the present eight hospitals, and advocating for a mental health law to protect the rights of the mentally disabled.

Şehnaz has a strong and diverse background combining management, trauma studies and clinical psychology, and has been working at the intersection points of mental health and human rights as a social innovator in civil society for over fifteen years.

Şehnaz has worked with earthquake survivors and at-risk youth, as well as in prisons and mental health institutions as a counselor. She built on these experiences to set up the first post-trauma support center following the 1999 Istanbul and Marmara earthquakes, to bring the leading international watch-dog organization in mental health to Turkey and to set up RUSIHAK.

Şehnaz has a unique perception of mental health, both as a scholar and a practitioner. Her unique positioning, combined with her personal experiences of living with mental health issues in her family, results in her dedication to bring citizenship to people living with mental disabilities and her ability to identify the critical points of intervention for impact.

RUSIHAK organizes people and institutions around a shared vision of a mental health system that prioritizes dignity and social inclusion, and empowers them to make it a reality.