Bagus Utomo

Despite the plethora of challenges surrounding mental health in Indonesia, healthcare still fails to prioritize the issue.Ssocial stigma has therefore extremely harmful effects on those living with mental illness. Bagus Utomo is organizing a nation wide mental health consumer groups to break the chains of stigma and improve the healthcare and the lives of people living with schizophrenia in Indonesia.

Moved by years of struggle for getting his brother a recovery, Bagus is developing Indonesia’s first mental health consumer group called KPSI (Indonesia Community Care for Schizophrenia) since 2007. Through the group, not only that people with schizophrenia are now able to break their own self-stigma, the family could work to take care of their family members and together they get over the burden of public stigma. Through this consumer group, patients, caregivers (colleagues and family), doctors (physiologists and psychiatrist), sufferers, and survivors (sufferers who already passed the culmination stage) share experience, knowledge, and learning. The care provided by the consumer group members become part of the community based psychosocial therapy, which the current health care failed to provide.
The absence of information and awareness of schizophrenia and other mental health disorders created stigma against people with mental disorders and their families. Bagus has therefore set up an online information centre, which has been evolving from web based, online to offline facebook group, to drop in centre and peer support group. He started with hundreds to 8,800 community members now connected online and offline of facebook groups spread in 10 cities. From the pilot in Jakarta, he is now setting up KPSI Jogyakarta and planning to grow the facebook groups become KSPI in different provinces in Indonesia.
To link to the current Government health care, Bagus is developing KSPI (http://peduliskizofrenia.org/) as a Community Mental Health Centre playing as part of the referral system to the current Public Health Centre (Puskesmas) in every sub-district. Currently, KSPI provides peer support of the survivors for those who are still working on the medication as well as psychosocial therapy not only for schizophrenic but also bipolar/manic depression and other mental illness. To ensure the mental health service is widely spread, Bagus is participating in the policy advocacy work for the new Mental Health Act, by which he hopes that the upcoming National Health Insurance will provide options to the current severe side effect generic drugs.

The number of reported psychiatric cases in Indonesia recently experienced a sharp increase. It is estimated that more than one million Indonesians suffer from schizophrenia. Indonesian official data stated that only around 36,000 patients have received medication and the rest is untreated. Although it's not a deadly illness, 30 percent of schizophrenic patients become very depressed and suicidal. Global studies estimate that more than one million people living with schizophrenia in the ages between 15-34 commit suicide each year.
Citizens suffering from mental health disorders face a double-edged sword. Not only do they have to contend with serious, disruptive symptoms, they still have to deal with rampant stigma and are subjected to discrimination and social exclusion. For example, due to the shame and the fear of the treatment, many families do not seek treatment, which have worsened the patients’ condition. Despite the fact that it is manageable and could be cured, families otherwise perceive mental disorders as unpreventable and incurable and some even associate with black magic. There is no information available in Indonesian about schizophrenia and other mental health illness. Due to the minimum knowledge and awareness on how to treat, families physically restrain schizophrenic patients using chains, ropes, cages, or other confined spaces. Some others would even leave the patients untended and wonder around out in the street.
Mentally disorder patients furthermore face self-stigma –stigma that comes from within, which becomes the major barriers for patient’s recovery. The patients internalize mental illness stigma and experience diminished self-esteem and self-efficacy as they less likely to seek treatment. Psychiatric practice has nonetheless centered on pharmaceutical treatments, rather than counseling and therapy. In addition to not providing the patients and the families with necessary information, psychiatrists have limited skills to offer an effective treatment. With only 700 psychiatrists working in Indonesia, their practice misses to engage patients, families and the community as part of the healing process.

To break the chains of stigma Bagus is providing means for patients, families, psychiatrists and the public to be informed and educated on mental illness and get connected as a community providing support for schizophrenic patients. With the mission to help other families who experience similar challenges, Bagus publicly stood out and shared his experience with his schizophrenic brother having gone through over a ten-year struggle trying to find out about the illness and appropriate treatment. To together actively combat the associated stigma, Bagus is seizing the advantage of technology where Internet penetration is growing very fast in Indonesia. Finding the easiest and cheapest way to reach out to families all over the country, Bagus set up a webpage to provide all information in Indonesian and make them connected. Social networking is therefore chosen being the fastest way to connect, communicate and share information and experience. Moved by Bagus’ experience where the engine has helped spread the information, many family members are not longer ashamed to also open up and join the force. Bagus then set up a dedicated group which now primary communities on a Facebook page with more than 8,800 users from all across Indonesia. From the Facebook groups, in 2007, Bagus set up KSPI (Indonesia Community Care for Schizophrenia) a mental health consumer group functions as community support groups for schizophrenia. In addition to do online activities, KSPI also meet offline.
Before reaching out to the patients, KSPI works first with the families. They will go over an adaptive therapy themselves, learn how to cope with stigma, able to identify symptoms and how to provide therapy for the patients at home. After the family implements the therapy and the patients are ready, KSPI will work with the patients to learn about coping techniques especially to address self-stigma. In addition to having access to support groups, patients also have mental health workshops and therapeutic activities including painting, sports and filmmaking and screenings. For the art and mental health, Bagus works with different partners to run exhibitions including a potential network with Dax Centre in Melbourne, the 3rd world biggest museum and art gallery for people with mental disorders. The patients also become peer support groups. In addition to supporting each other through a weekly group gathering, they also work on a one on one support reaching out to those who are still at homes. Most support deals with self-stigma and motivation to continue taking the medication. Now KSPI has worked with Public Health Centers (Puskesmas) for referrals and peer supports extension.
Together with the patients and the families, Bagus conducts campaigns to increase public awareness and mobilize supports from psychiatrists, clinical experts and volunteers. For the later, he develops a volunteer program and through a partnership with AUSAID, KSPI mobilizes Australian youth to do internships. Bagus uses arts as the media both for therapy and public campaign. For example, he works with film producer and made a 30-minute film called Split Mind to show case to the public about how a schizophrenic patient could recover and be socially active again in the community. The film also shares how the patient ends up with medication after a long haul of alternative therapy search and how families and neighbors play a critical role in the recovery of the patient. People who have changed their perception will eventually help smoothen the patients’ recovery. KPSI will do film road shows to different universities at the psychology and social faculties but also to villages in several cities including Jakarta, Surabaya, Medan, and Banjarmasin. From the campaign it is expected that denials will be replaced by early treatments. Soon Bagus is planning to do veterans’ mental health testimony documentary videos, which will be uploaded on youtube to widen the impact.
Bagus and KPSI are currently partnering with the Indonesian Association of Psychiatrists and the Indonesian Mental and Drug Dependent Hospital (IMDDH) supported by the Ministry of Welfare and the Ministry of Health to widen the public campaign called Lighting the Hope for Schizophrenia. The program is to increase awareness and combat stigma especially amongst mental health service providers and hospitals and the wider public so that patients could as early as possible be diagnosed, treated, recovered and be productive again. Activities include Training of Trainers for health officers from different districts in Bali and Java on updated mental health information including how to treat schizophrenic and other mental health patients. The program also provided education car to be used for outreach mobile campaign. The partnership works with the media through media training and journalistic competition around schizophrenia, radio jingles and TV programs. KPSI now works as a liaison between communities, non-government organizations and the Indonesian government to improve the knowledge of proper treatment of schizophrenia, and the harmful effects of mental health stigma.
Bagus is currently participating in the policy advocacy for the new Mental Health Act. He has also been working to ensure mental health is part of the National Health Insurance and this year the service is available at the Public Health Centers, District Hospitals and Mental Hospitals. Bagus is now working on integrating his community support in these services. Furthermore, Bagus will continue the work so that the insurance could also cover drug options that have less side effects on the patients in addition to the current generic ones. Recently, he was invited to speak about the mental health patient group development to the Asia-Pacific Pharmaceutical Compliance Congress and Best Practices Forum who will ensure the pharmaceutical business ethics applied in each country. While building the nation wide network of mental health consumer groups, Bagus is also developing regional and global network to spread the impact. Last year he was invited to speak about his mental health consumer group at the Global Mental Health Summit, an initiative of the School of Population Health, Melbourne University, in Bangkok where all Asia Psychiatrists convened.

Bagus was born in Jakarta in 1973, the 6th of 8 siblings. His father worked as the Indonesian Soldier. Young Bagus loved to play in the paddy fields and planted fish and chickens. He recalled when he was at junior high he had hundreds of chickens. Due to financial limitation to pay for transportation, Bagus spent more time with his families than joined school activities. He learned about the value of helping others from his father. After graduated from high school, Bagus wanted to study medical, however, his brother suggested him taking library science, as it would be easy to get a job. He then graduated from the Letters Faculty, University of Indonesia in 1998 and works as librarian consultant since.
While at university, his brother began showing symptoms of schizophrenia and was diagnosed with this chronic brain disorder in 1995, followed by many years of unsuccessful treatment and used up a lot of family resources. During this time Bagus and his family were not able to find much information about the disease and had no one with whom to share their burden. It was more than 10 years before Bagus and his family were able to find the appropriate treatment for his brother. He recalled the doctor who treated his brother only told him to return when the drugs were finished.
Being a librarian, in 2000, Bagus began looking for his own information online and created the first website on his own expenses. The following year he set up a mailing list named s c h i z o p h r e n i a - [email protected] and 600 members joined in. In 2009 the mail-list is moved to facebook group called Indonesia Community Care for Schizophrenia (KPSI). Motivated by intense need and the desire to help other struggling families, Bagus registered KPSI as a foundation in 2012. Since then the members went up to 8,800 in 2013. Members of the group are the sufferers, family members, psychiatrists and other health service providers. Surprisingly, there are teenager members who are already showing early symptoms. The groups, however, are able to openly discuss and work together to support for the recovery. In 2012, Bagus received the Dr. Guislain "Breaking the Chains of Stigma" Award for his work combating stigma against people living with mental health disorders.