Nakibuuka* is 26 years old and first arrived at Butabika National Referral Mental Hospital in December 2012. She had spent three years homeless in Kampala, where she was raped and become pregnant. A kind citizen recognising that she was pregnant took her to a police station, from where she was transferred to the hospital.
In addition to helping her through pregnancy, Butabika hospital was the first place the then 23-year-old would receive treatment for mental health issues.
“Counselling helped me. The nurses who wear white would counsel me. I was badly off. There was a force pushing me away from people. But now I can talk to people again,” says Nakibuuka.
Butabika National Referral Mental Hospital (commonly known as Butabika hospital or Butabika) is Uganda’s second largest hospital and the centre for mental health treatment and education in the country. The hospital may house anywhere from 700 to 800 patients at any one time, although it was built for a capacity of 550 patients. And though mental health issues face a lot of stigma in Ugandan society, the hospital has become an oasis for patients who need assistance.
There are many assumptions about mental health facilities in Uganda, based on stigma and fear. The result is that people who legitimately need the services are either afraid to access them or are prevented from going by their families. Many patients who have received treatment at Butabika hospital, say that not only is the experience endurable, but it has often allowed them to recover and rebuild their lives.
One of the misconceptions about being admitted to a mental health ward is that when one enters the hospital, they will lose themselves or never come out. The truth is that, however frightening the prospect of being hospitalised for mental illness, the hospital is often the place patients begin to find their way back to recovery and back to themselves.
Mental disorders accounted for 10.5 per cent of the global burden of disease in 1990. They increased to 12 per cent in 2000, and are expected to reach 15 per cent by 2020 (WHO, 2001).
Findings from the Uganda Bureau of Statistics (2006), for example, basing on the UNHS 2005/06 Qualitative Module Report, found that of all households with disabled members (an estimated seven per cent of households in the country), 58 per cent of those households had at least one person with a mental disorder.
It is, therefore, increasingly imperative to address and resolve the stigma associated with mental illness, the experience of admission into a mental health institution and support the development of mental health facilities.
*Patients’ names have been altered to protect their identity.
The key figures at Butabika
According to the Executive Director of Butabika National Referral Mental Hospital, Dr David Basangwa, the hospital treats about 7,000 inpatient mental health cases and 30,000 outpatient mental health cases annually. Patient care at Butabika hospital has been on a long road of improvement but the low health worker to patient ratios greatly affects patient care. Dr Basangwa reflects that there are only 32 psychiatrists in the country. This figure alone is indicative of the challenges of treating mental health illness in Uganda and the need for more medical students to enter the profession.
The numbers are slightly better when it comes to psychiatric nurses but are also still dismal. According to David Kyaligonza, assistant commissioner nursing services at Butabika hospital, the ideal mental hospital setting would have a ratio of one nurse to six patients but at Butabika, this number is one nurse for every 55 to 60 patients.
Doctors and nursing staff learn quickly to prioritise a patient’s most important needs. What may fall by the way side are the social interactions between health workers and patients that are a very necessary part of the healing process.
The admissions wards where patients in various acute stages of mental health first reside are prone to a lot of damage. Mattresses and bed sheets are torn; walls and windows are damaged regularly. It is a challenging place to experience. Sometimes patients get violent with each other or with the staff.
One of the most difficult aspects of a patients’ stay in the hospital according to consultant psychiatrist, Dr Sylvia Nshemerirwe, is adjusting to the varying degrees of mental illness around them particularly in the admissions wards. “ But they learn to adjust,” she says. Living with acute mental illness in a hospital setting may be difficult and painful but living with acute mental illness outside a hospital setting isolates and dehumanises a person and makes them especially vulnerable to all manner of all maltreatment.
Mental illness can happen to anyone and at any time. It may happen gradually or occur as a result of trauma or illness.
Dr Nshemerirwe, says, “Every patient is unique in their suffering”. Often, mental health illness presents as a result of a combination of factors: trauma, environment, brain chemistry, and/or genetics; physical illnesses such as HIV and malaria may also result in mental illness. Sometimes it maybe a singular factor that leads to a break down. Extreme poverty is increasingly recognised as a stress factor and a cause of mental illness.
An average stay at Butabika hospital may last between two to three weeks. But it is possible to have a stay as short as three days. Ideally, where it is possible, the hospital would want to place patients back in the care of family. The children’s ward is an example of this intent. Today there are 18 patients but during the financial year 2012/13, (2015 Budget Framework Paper) the Child and Adolescent clinic saw approximately 3,775 patients.
Kyaligonza, says “Our hospital is like a car mechanic’s garage. You bring a patient in for repair and then release them when they are better. “Family,” he adds, “is critical to sustaining a patient’s recovery and avoiding relapse.”
In the children’s ward, psychiatric clinical officer, Ms. Alezuyo, says, “One of the most frustrating aspects of our work is the high rate of return of patients. “We can help patients here but we cannot solve the problems at home”. A patient may be on the way to recovery but return to a home in which the stress factors that led to her breakdown still exist. Patients also suffer crises of confidence as a result of family constantly pointing to their mental illness as a cause of problems in the family.
In the financial year 2009/2010, Butabika provided inpatient mental health care to 4,394 first time admissions and 1,752 readmissions. (WHO, Uganda Country Summary, 2012).
One of the main causes of recidivism in mental health recovery is the stigma and patient blame attached to the illness and the lack of support patients receive at home. This leads to anxiety and frustration and patients find their way back to the hospital, willingly or unwillingly. Families are often invited to participate in some sessions with their loved ones in order to gain understanding of mental health issues and to be involved in the care plan of the patient. Unfortunately, many families still decline to participate in such meetings or are ignorant of the importance of such processes to a patient’s recovery.
Evolution of mental healthcare at Butabika national referral mental hospital
Mental health treatment at Butabika hospital has changed vastly since the early 1990s and we are always trying to improve the practice of care for our patients,” says Assistant commissioner nursing services at Butabika hospital, David Kyaligonza.
Routines and schedules are a part of hospital life and Butabika is no exception. The day consists of medication schedules, three mealtimes and weekly doctor consultations. Where a ward does not have a scheduled afternoon occupational therapy session, patients spend their days lying on the lawns of the wards or sitting on the sun-warmed pavements that surround each ward. There is a lot of time spent listlessly and the hospital welcomes new ideas and partnerships to support patient recovery.
At 10.30am, those patients selected for occupational therapy are picked from their wards by an occupational therapist and nursing staff. The occupational therapy room is wide and airy. Above the windows are a few paintings by patients.
Nakibuuka*, a patient rescued from the streets, finds her seat among fellow patients. She is one of the few patients wearing slippers although they are a mismatched set: red on the left and green on the right. Slippers are one of the few possessions patients are allowed to keep on their person at Butabika Hospital.
In the three years Nakibuuka spent homeless on the street, she fed from rubbish pits and slept on verandahs. Her mental health problems manifested in various ways: hearing voices, undressing in public and losing a sense of what was considered normal behaviour. Once in a while, she would find her way to a Catholic Church and sit in the back pews and partake in the service. “ I was so afraid to be near people, I felt so far from other human beings after being abandoned by my sisters. I could never have imagined that I would ever again sit and engage with fellow human beings”.
Nakibuuka found herself homeless after her mother, her only surviving parent, died when she was in her third year of secondary school. “My parents were dead; my siblings sold the family land and abandoned me. I was very scared and I got problems in my head,” she recalls.
One of the critical aspects of healing is to enable patients to gain some insight into their mental health and to accept that they have a mental health disorder.
Nakibuuka may be recovering and clearly accepts her mental illness but she still finds it hard to define what exactly her mental illness is. She can only name the manifestations of the disease but not the particular disorder itself, “I have mental problems,” she says.
One of the recent issues identified after an internal survey at the hospital was that many patients felt that they did not understand what they suffer from. In 2014, the hospital carried out a survey on patient needs and concerns. Kyaligonza says that based on that survey, the hospital is now in the process of creating a system whereby health workers will start deliberately educating patients on the many different kinds of mental disorders that exist and how to identify their own disorder.
In the mind of sufferers
The discussion in the occupational therapy room centres on taking medication and the occupational therapists present different scenarios and ask patients to consider: `Do you think medicine works or is it prayer? Or is it traditional healers?’ The majority agrees that it is medicine but the other things help too. There are some dissenters insisting prayer will work alone. One man says he uses medicine one year and prayer the other year.
These patients are on the way to recovery, which means that they are almost ready to go home.
During occupational therapy patients are taught social skills and taken through discussions on how to avoid relapse, among others. The therapy sessions also provide an opportunity for training in crafts, cookery skills, sewing (before the machines broke down), working in the plantation as well as playing games, dancing and re-engaging with the outside world.
As the morning session comes to a close, the nurse remarks to the patients ”this illness comes quickly but leaves very slowly and the best way to heal is to take our medicine.”
While medication is a core aspect of treatment, patient care involves a combination of factors. There is a social work department to assess that a patient will be able to maintain their health in their home environment, as well as an assessment by psychiatrists and psychologists. One of the causes of longer stay of patients according to Dr Sylvia Nshemerirwe, is the fact that it takes time for the various health practitioners to meet and discuss a patients file.
There have been many long stay patients at the hospital, particularly men. But those who stay at the hospital “forever” are the ones who are not claimed by their families or where the social work department has failed to identify family.
“I think about what will happen to me when I leave here or how will I leave here when I have no one,” ponders Nakibuuka who has not identified any family thus far and has been at the hospital for almost three months. This is how patients become long stay patients and make a home of the hospital.
Sister Mildred Lakwo who has been at the hospital since she was a student in the 1980s reflects, “For the long-stay patients - we can call their families to claim them and they do not come. But when we call the family to inform them that the same patient has died they come in large numbers to receive the body.” This, she says, is one of the most tragic things she witnesses at the hospital -that family members are so easily discarded because of their mental illness.
Long-term institutionalisation is the worst-case scenario for mental health treatment but the hospital cannot release a patient without knowledge of who will be a part of her or his support and care network outside of the hospital.
As of June, Butabika Mental Health Referral Hospital has resettled 150 patients into their communities.
While it is terrifying for patients when they are first admitted to a psychiatric ward, the fear and pain of that initial admission gives way to the understanding that mental health illness is treatable and sometimes curable.