Mental, Neurological, and Substance Use Disorders in Sub-Saharan Africa: Reducing the Treatment Gap, Improving Quality of Care: Summary of a Joint Workshop by the Institute of Medicine and the Uganda National Academy of Sciences (2010)

The day before the workshop began in Kampala, members of the planning committee were invited to visit local health facilities to see first-hand the challenges and opportunities faced by those trying to provide high-quality mental health, neurological, and substance use (MNS) disorder health care in sub-Saharan Africa (SSA). Members visited three facilities: a local health clinic in a rural village, a regional hospital in Uganda’s second largest city, and a community-based organization that works with parents and families of children with disabilities. These site visits reified many of the practical and technical hurdles discussed during the workshop, from insufficient infrastructure and resource constraints to social taboos and overwhelming need.

The visits also showed that these challenges can be overcome. Patient groups were organizing, and awareness was on the rise. For a visitor from the United States, the gap between standard practice in Western healthcare settings and the real-world situation in Uganda can be over-whelming. One lesson from the visit was that this gap need not be fully eliminated to nonetheless transform the lives of patients in the region. Focused effort and step-wise improvement can drive huge changes in the lives of patients on the ground. The site visits emphasized the need to start now.

The Budima Health Center is located in the Budima parish of the Butagaya subcounty in the Jinja district. The health center is approximately 30 km from Jinja, the second largest city in Uganda, located on the shores of Lake Victoria approximately 80 km from Kampala. The

road to Budima is unpaved but well traveled. The health center offers a wide range of services, including a maternity ward. According to a sign posted on the wall of the center, services offered include the following:

• general medical services,

• immunizations,

• laboratory services,

• routine volunteer counseling and testing for HIV,

• antenatal care,

• maternity care,

• postnatal care,

• dental,

• health education,

• family planning, and

• preventing mother-to-child transmission of HIV.

The maternity ward consists of three rooms: a delivery room, a recovery room, and a room for prenatal visits. The clinic handles approximately 35 births per month, with each new mother and infant staying in the recovery room for about 24 hours after delivery before going home.

The clinic’s role in education and outreach was evident on entering the clinic, with its walls covered with educational posters on a wide range of topics, including the importance of prenatal testing for sexually transmitted diseases (such as syphilis), childhood immunization, counseling for HIV-positive pregnant women, and information on how to avoid Schistosomiasis, locally know as bilharzia. The posters use pictograms as well as text in English and Swahili to reach the full range of patients.

During the visit to the health center site, forum participants were warmly welcomed by John Ibugo, chairperson of the Butagaya Parent Support group, a group dedicated to supporting the parents of children suffering from mental health disorders. The support group is made up of 46 members, drawn from the 67 villages in the Butagaya subcounty. Ibugo spoke of the challenges that families of disabled children face in the area. The catchment area for the clinic is large, and transportation is a major issue. Support group members have conducted more than 2,000 home visits that have helped them to locate 250 children with a wide range of disabilities, but many more may be out there. Parents often do not understand mental health disorders and simply do not know how to care for their children with disabilities. The area is poor, and there is a lack of vital resources such as medication, mosquito nets, and money to

pay for supplies. Further complicating their work, schools in the area have no resources or knowledge of how to deal with disabled children either.

At the time of the site visit, more than 50 parents and children had come to the health center to meet with the visiting mental health nurse and receive medications. The health center does not have a full-time mental health practitioner; instead a mental health nurse comes once a month to meet patients and dispense medications such as antiseizure drugs. A parent group was started as a grassroots way to help families with children with mental health issues, such as epilepsy, schizophrenia, and other disabilities. It may be a model for outreach in other areas because simply raising the level of awareness among families in the area could significantly increase the quality of care.

Part of the Jinja Referral Hospital, the mental health unit is located a few blocks away from the main hospital campus in a small complex of buildings. Organized around an open courtyard area, one building contains the Psychiatric Officer’s office, a patient examination room, and a waiting area, while another contains a room for female patients and a room for male patients. The hospital has few staff—primarily a single psychiatric officer and his intern—but manages to treat a wide range of conditions. One way this is possible is intense involvement by patient families—they accompany patients and take responsibility for their daily needs, such as feeding and bathing. The hospital is an example of how limited resources can be stretched to extend the quantity of care delivered in a region by providing another resource for the rural village centers. Being at the site, however, one could feel the overwhelming demand for services and the potential for improvement with even a small injection of focused funding. At the same time, the challenge—surging demand and limited funds—was readily apparent.

JINJA Network of Parent Support Groups (JINEPAS) is an organization that runs both parent support groups for parents and families of children with disabilities as well as “Child Right Clubs”—clubs that serve to educate children about their rights. The district of Jinja has a population of nearly 400,000, 59 percent of which are children, according to JINEPAS. It is estimated that more than 35,000 of those children, or 16 percent, have some type of disability. The disabilities include various

mental and neurological disorders, such as epilepsy and cerebral palsy, as well as physical disabilities, such as blindness, deafness, and other physical disabilities. The Jinja district consists of 13 subcounties, of which JINEPAS is active in 9. JINEPAS is currently coordinating six parent support groups and five Child Right Clubs. The parent support group that the site visit participants met with in Budima is part of JINEPAS.

JINEPAS works to ensure that the policies in place address the needs of children with disabilities, helping them to live fulfilling lives. JINEPAS helps children with disabilities access services available from the government as well as from local and international non-governmental organizations. It also is working to reduce the stigma associated with disabilities by educating parents and helping them to become advocates for their children. JINEPAS members voiced a strong commitment to help their children but also a huge array of challenges, including

• inadequate access to pharmaceuticals,

• inadequately trained staff at health centers,

• inadequate disability units at schools,

• inadequate information sharing,

• a lack of assistive devices for physiotherapy,

• a lack of occupational therapy services, and

• a lack of vocational schools for children with disabilities.

The presence of groups like JINEPAS in the region has laid the groundwork for significant improvements in the lives of area patients. Again, with a dedicated influx of resources and attention, the sense was that much could be accomplished.

The site visits set the tone for the workshops that followed. They revealed enormous need, significant challenges, and a growing group of parents and caregivers focused on improving the quality of care for mental health disorders in the region. Progress is being made, but the need continues to grow. According to local statistics, for instance, 16 percent of children in the Jinja district are estimated to have some kind of disability, including mental health disabilities. Epilepsy is the number one mental health concern, with prevalence rates that significantly exceed rates in Western nations. Theories for why epilepsy is so prevalent include the problems of nutrition, birth trauma, malaria, and sickle cell dis-

ease. Patients suffering from disorders such as epilepsy face enormous challenges in receiving quality care, starting with basic issues like transportation. The 30 km trek between the rural health center visited by the planning committee and the local mental health hospital means that if a patient cannot be treated at the health center, he or she is unlikely to be brought into the hospital—it is just too time and cost prohibitive, especially because a family member would need to accompany the patient. The lesson learned: If treatments cannot be brought to where the patients are, patients are unlikely to come to the treatments.

Even when transportation is not an issue, other hurdles remain. Few providers are knowledgeable about mental health disorders. The mental health nurse is only able to come to rural health centers once a month to see patients, and there is only one Mental Health Officer and an intern in the region’s central mental hospital. The health clinic also has a limited supply of medications that it receives from the government for treatment of mental health disorders. When the government runs out, drugs are not available to the patients. Because shortages do occur, some groups have begun to set up drug banks that purchase medications that can be used by the health center in times of shortages. But given the critical importance of consistent care in mental health disorders, ensuring the steady availability of key drugs must be a focus of any mental health reform.

The stigma associated with mental health disorders is still a huge deterrent to obtaining treatment. The parent support group spoke of people with mental health disorders being restrained in villagers’ homes to avoid attention in the community. Reducing stigma is a major thrust of the parent support group mission. It is hoped that through education and a general sensitization to disabilities, stigma in the communities can be reduced, and children with disabilities will be more likely to obtain the services they need to lead better lives.

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