A faculty, a report and some strong local leaders show that good mental health care is achievable
In Indonesia, like in many other places in the world, many individuals with severe mental illness (such as schizophrenia) are chained up or have their legs placed in wooden blocks. Many are locked in a small quarter of the house as well. This practice is called ‘pasung’.
In 2010, in collaboration with professional associations and consumer groups. the Indonesian government initiated the Indonesia Free from Pasung Movement (Indonesia Bebas Pasung) to liberate people with mental illness from pasung. Pasung is not unique to Indonesia, but Indonesia is one of the only countries that has legislated to abolish it.
Freeing people from pasung is not easy or straightforward. Caring for persons with mental illness needs to involve their families, communities, the government and the health care system. To foster awareness of the problems faced by individuals with severe mental illness and free them from pasung, one needs to understand the local culture as encouragement and support from the whole community is needed.
The Centre for Public Mental Health (CPMH) in the Faculty of Psychology at Universitas Gadjah Mada has been advocating for the rights of individuals with mental illness who are confined at a private facility run by Mbah Marsiyo. Marsiyo is around 80 years old and a dukun, or traditional healer. (‘Mbah’ is Javanese for ‘grandfather’.) The unofficial care facility is located in Mbah Marsiyo’s home in a rural area of the Kebumen district, in Central Java, about three hours west of Yogyakarta.
Mbah Marsiyo has received patients with mental illness in his home for more than 40 years. Most patients were brought to him by their families. He believes that the best way to cure mental illness is to bring patients closer to the soil by chaining their legs close to the earth. Around 30 men and 30 women reside at his facility—half of them are chained in this fashion in open concrete cells, partially covered from the elements by tin and asbestos roofing.
We, at the CPMH, have been engaged in advocacy to end this terrible situation but it has not been easy. Our efforts gained momentum in late 2017 when a nurse at the local community health centre (puskesmas) attended a workshop about eradicating pasung. The workshop inspired her to get the local authorities to pay attention to the fate of people with mental illness chained up in Mbah Marsiyo’s facility. Kebumen’s local government subsequently made it a priority to change the situation, as reported in the local media.
Advocacy in Kebumen
In 2015, the CPMH began to try to find out what could be done to change the conditions at Mbah Marsiyo’s home. From the beginning, the CPMH involved several international collaborators, such as Associate Professor Harry Minas (University of Melbourne), Professor Hans Pols (University of Sydney), Professor Theo Bouman (University of Groningen) and Associate Professor Erminia Colucci (Middlesex University). At that time the centre also had an intern – Aliza Hunt, a PhD student at the Australian National University.
Aliza visited Mbah Marsiyo’s and was deeply concerned about Marsiyo’s poor facilities and the large number of vulnerable people being subject to the practice of pasung. She wrote a report that we shared and discussed intensively with a small number of mental health activists. We then set out to find someone who could bring about change and also assessed the capacity and potential of Kebumen’s mental health care system.
We soon met Sian, a nurse, who was in charge of mental health programs at the puskesmas in Mirit district. The puskesmas was already providing some medical care to patients in Mbah Marsiyo’s facility. Despite having many other responsibilities, Sian was concerned about Mbah Marsiyo’s patients. She had never received any training as a mental health nurse; however, she mobilised her colleagues at the puskesmas to donate part of their salaries to buy food and toiletries for Mbah Marsiyo’s patients on a regular basis.
Sian started bringing medicines from the Kebumen Health Office every month for the patients at Mbah Marsiyo’s. The health office had started donating psychopharmacological medications to Mbah Marsiyo in 2014. Since then, some of the residents received regular medication. These medications are offered routinely to control symptoms and are part of the management of patients with mental illness.
Inspiration from a workshop
In September 2017, Sian attended an international workshop on eradicating pasung organised by the CPMH and chaired by Associate Professor Harry Minas. The workshop was attended by both local and national activists from the Indonesia Free from Pasung Movement and international researchers who were interested in the development of the Indonesian mental health care system. We invited Sian as a guest of honour.
Sian was inspired by the workshop. She became convinced that the problems at Mbah Marsiyo’s care facility could be addressed if an official institution was established by the District Office of Social Welfare. She contacted its head, Dr Budi Satrio, to discuss her proposal and presented him with Aliza Hunt’s report about Mbah Marsiyono’s facility.
Dr Budi Satrio responded to Sian’s proposal and visited Mbah Marsiyo’s home with more than 90 people. They cleaned the house and its surroundings, bathed about 60 people with suspected mental illness and gave them haircuts. The Kebumen Regional Disaster Management Agency provided two trucks with water for the occasion.
Also in 2017, Kebumen’s regent, Muhammad Yahya Fuad, with members of the regency council and other parties finally began building a new psychiatric facility. They hoped that it would be a place where people with mental illness could receive better care to facilitate their recovery.
Since then, a lot of efforts have been undertaken. The CPMH and Aliza Hunt, with the advice and help of Associate Professor Harry Minas, also continued to work closely with Kebumen’s local government. Minas advised the regent and his staff to continue building the mental health care system. Many meetings, both formal and informal, have been organised since then and the CPMH has provided training on mental health literacy to local government officers.
Strong local leadership is required to make change happen. We had a strong champion in Dr Budi Satrio of the District Social Welfare Office. Recently, he was appointed head of the District Health Office, which made his position for building a mental health care system even stronger. He appreciated our efforts very much and took the initiative throughout. This year, Mbah Marsiyo agreed to release his patients from pasung if he received sufficient support to build appropriate facilities for them. Mbah Marsiyo’s is now collaborating with the local puskesmas, and Kebumen’s local government is inviting the local community to support the fundraising for Mbah Marsiyo’s place.
The progress made in Kebumen is extraordinary. Step by step, they are building a comprehensive mental health care system.
No instant results
Advocacy work hardly ever leads to results quickly. Although the local government was concerned and began providing alternative forms of care, there were still patients at Mbah Marsiyo’s in pasung. Families of individuals with mental illness still sent their family members there.
In October 2018, the Faculty of Psychology at Gadjah Mada University (UGM) held the International Short Course on Mental Health Advocacy and arranged a visit to Mbah Marsiyo’s for participants to learn about the role of advocacy in developing a comprehensive mental health care system. The visit was to show the participants the challenges that they can expect in the real world.
When Mbah Marsiyo was receiving the guests and explaining the nature of his treatment methods, a pink car arrived. We witnessed a family surrendering a young man to Mbah Marsiyo’s facility. Mbah Marsiyo welcomed the family kindly and requested a voluntary contribution for maintenance costs. The family were also asked to sign an agreement that included the following clause: ‘The family will not sue Mbah Marsiyo if anything happens to any individual with mental illness entrusted to Mbah Marsiyo’s care’.
The desperate family related that the young man they brought had been admitted to mental hospitals more than 15 times. However, within two weeks after being discharged and returning home. he always relapsed and became aggressive. The family’s neighbours were scared and, fearing his bouts of violence, they refused his continued presence in the community. Reluctantly, the family had brought the patient to Mbah Marsiyo’s.
This sad story shows that at least five things are currently missing from the care of individuals with severe mental illness: regular treatment, including medication; psychotherapy; supportive families; a non-stigmatising community; and appropriate activities so that individuals with mental disorders can achieve ‘wellbeing’ and live productively. It requires extensive advocacy work to have a comprehensive mental health care system established. From the situation in Kebumen, however, we learn that it is possible to initiate changes towards better ways of dealing with persons with mental illness.
Diana Setiyawati (firstname.lastname@example.org) is the director of the Centre for Public Mental Health at the Faculty of Psychology at Gadjah Mada University, Yogyakarta. She obtained her PhD in 2014 at the University of Melbourne for her research on integrating clinical psychologists in primary health care in Indonesia.