Severe mental health problems in Rio de Janeiro slums: Rethinking mental health services
To mark this year’s WMHD, the Mental Health Innovation Network is running a month long series (#WMHD2015 Blog Series) highlighting dignity in four areas of global mental health where dignity is most often compromised and/or redeemed. This week’s subtheme is “Human Rights and Ethics”.
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Inspired by human rights and ethics issues in the mental health field, this entry is on primary care and mental health integrated services in primary care in Rio de Janeiro´s slums, specifically on identifying false imprisonment cases without any assistance.
In our experience as mental health professionals and researchers in LIPAPS at the University of State of Rio de Janeiro (UERJ), primary care and mental health collaborations have helped to rethink mental health strategies offering access and delivering care to people with severe mental health problems, and also how best to address difficulties in treatment adherence. Together with our collaborators, we have been involved in this for many, many years now, and we are very happy to recognize that it has allowed us to get closer and build relationships with people with severe mental health disorders and, in turn, guarantee that they receive the support and treatment the way they deserve.
Background of community primary care services
But first we must set the scene by explaining that primary care services based in the community are mostly located in low resource and sometimes-violent communities, usually slums. The Brazilian National Health System (SUS) is universal and free of charge, and primary care has a territorial basis where family health teams (FHT), consisting of a doctor, nurse, nurse technicians and community workers (CW) each, are responsible for caring for 3,500 people. Their responsibilities include health promotion, especially promoting citizenship. Integration of mental health professionals in primary care has been enlarging in political and clinical terms since the beginning of the century, but especially after 2008. They no longer work only in specialized Psychosocial Care Community Centres (CAPS) and outpatients units, but also in collaborative interdisciplinary work with FHT in primary care, through the Mental Health Matrix Support (MHMS) teams.
New mental health primary care services
Together, the MHMS teams have been developing mental health primary care services to deal with different types of problems such as anxiety, depression, medical unexplained symptoms, alcohol, drugs, violence and severe mental problems.
Here we want to underscore the importance of this new setting as it provides a structure to rethink traditional mental health care beyond the specialized clinic walls. Essentially it integrates two complex and very different work processes (primary and mental care) and helps with the access and treatment gaps for people with mental health severe problems. The new structure is a very rewarding aspect of our practice as it changes peoples lives by touching upon basic rights such as access to care, freedom to move around and to participate in the community are involved.
Case studies from the community
Whilst providing services as part of our MHMS teams for several years, we have found patients without adequate treatment, locked at home and part of families who did not know how to get some help. Little is known about the exact number of the cases which fell in one of these categories, but it is estimated that each FHT has found at least one patient living in a situation which goes against basic human rights.
We would like to describe three cases we have found as psychiatrists based in the community, integrated into the FHT:
A 18-year-old boy, that was catatonic and in mutism, with signs such as automatic obedience and waxy flexibilitas for more than a year. He lived with his father and sister, an illiterate poor family, with a high level of family dysfunction. When they managed to get a consultation, which was far from home, they did not follow the prescribed treatment properly, missed follow up appointments and finally abandoned treatment. In 2002, the boy was identified by a FHT and once again was referred for specialized mental health treatment. However, as before this action failed. Finally, in 2004, we decided to start treating him in the community, starting decanoate haloperidol. He was also sent for treatment in CAPS again, but this action failed again and we considered that the family was too dysfunctional and therefore wasn’t able to help him in the way he needed.
A 41-year-old woman presented psychotic symptoms for about 15 years. She was very aggressive and had never gone for regular treatment before the MHMS intervention. Her father once hit on her feet with a broom, which may have caused difficulties in walking, leading to bed confinement. Apparently, the family did not seek proper treatment for her injury. Furthermore, after her parents died and she was left alone at home and only after a complaint made by neighbours to prosecutors, her brother started to take care of her. Today she is very stunted, withered and never leaves home and has quite disorganized speech, although she adequately answered our questions at times.
A 55-year-old woman was found by a nurse living in a cave in a forest in Rio, only after a FHT went to search for dengue mosquitoes following a complaint by a person nearby. She is totally delirious but recognizes her partner who comes to visit her at times.
Our group have found other cases like these as have several others workers from the MHMS and FHT in all parts of Brazil. We are very motivated to help change the situations of these people, even if we do not manage to solve all problems.
Commonalities among severe mental health cases
We have identified some common negative points in all the severe mental health cases found in the communities by primary care workers, especially the community workers without adequate treatment:
- Severe cases, in social isolation (many times locked at home)
- Stigmatized and severe social isolation
- High level of impaired functional capacity
- Dysfunctional families
- Admittance to hospitals, outpatients units or CAPS (some) previously but lack of adherence to treatment
Primary mental health care (PMHC) in Brazil unique because it is implemented from within the communities, with the communities, through an interdisciplinary approach. We help FHT work by preparing them to identify and care for mental health cases. Through this, PMHC guarantees basic human rights to these people such as improving access to care, providing support to families to overcome their difficulties including psycho-education and encouraging participation in social activities.
Learning lessons from this new structure
Our new structure includes new skills that we, the mental health professionals, have learned with the FHT: doing active search, working through domiciliary visits and interdisciplinary actions. With these tools the teams map the real problems in the community under their responsibility and draw the best strategy to these problems.
This experience has helped us rethink our mental health professional limits. We have learnt that:
- Stigma related to mental health needs to be addressed
- Humanitarian actions such as mapping the basic life conditions and looking for things like access to basic civil rights need to be a part of our job (and now are)
- Social networks, established by relationships through the community, can help to find solutions
- Daily visits by CHWs improve trust and facilitate adherence
- Directly observed treatment, short-course (DOTS) can be very useful to monitor and deliver treatment for severe cases
- Treating physical health problems help to build trust between patient and FHTs
- Inviting these patients to activities in the community, such as exercise groups, handicraft activities, and community therapies is a great way to get them involved and to help them understand that it is a way to care for their health.
And what we have done for the three case studies we described?
With the help of primary care teams, especially the CHWs, we have contacted key people in the community, such as neighbours, that help to look after each person with a mental health problem. Primary care teams are responsible for ensuring that they take their medications and have worked with them to encourage them to return to taking part in community activities, which has turned out to be an important part of their treatment. Now they are back to living a better and more dignified life as part of their community.
And what have all these patients done for us?
They have taught us that treatment is more than just medication; treatment needs to include the guarantee of dignity and fulfillment of basic human rights.
They have also empowered us to face difficult social and family problems, understanding that solutions are collective and involve different people, not only health professionals. Lastly, they have made us stronger and happier in our work and life.
Acknowledgement: This blog has benefited from comments and inputs from Joana Thiesen and Naly Almeida both psychiatrists and community therapists.
Image courtesy of Valentina Iemmi. Copyright © 2015 Valentina Iemmi. All rights reserved