Uganda has come a long way in its recognition and treatment of mental health problems, but stigma and a misunderstanding about conditions remain
John Ewunyu looks like any other 30-year-old man, standing at the entrance to his home in Agora village, in Katine sub-county, on a Saturday afternoon, dressed in purple shorts. He mumbles a greeting.
"When he is calm, like now, he is OK," says his mother, Regina Atilo. "He does not drink alcohol. He loves bathing and plays football with little children, who are his best friends."
But Ewunyu is often not OK. Atilo says her son was still a small boy when a fierce, dust-churning gust of wind swept into the compound and disappeared at the spot where he was sitting. Since then, Ewunyu has experienced countless epileptic seizures and psychotic episodes, which are not easily treated, or recognised in Uganda.
Mental illness does not receive the same attention as HIV/Aids or malaria, but is just as serious. A consultant psychiatrist at Butabika hospital, Uganda's national referral mental hospital, recently told The New Vision newspaper that 35% of Ugandans – about 11.5 million people – suffer from some form of mental illness, with depression being one of the most common. But barely half of these people seek medical attention from health centres in a country where people only associate mental illness with advanced and manic psychosis.
For Atilo's family, more than 20 years of nursing a family member has taken its toll. Sometimes when Ewunyu's situation deteriorates, his mother says, it becomes difficult for anyone to work their land. In June last year Ewunyu suddenly became aggressive, quarrelling with and threatening to attack everyone. He stormed out of the house and disappeared from the village, ending up in Katakwi district, about 80km from Katine.
"We looked everywhere and ran announcements on the radio but we could not find him. We had virtually given up when information came about a mad youthful man who had been arrested in Katakwi. His father went there and found him seated calmly like he is now. But he had been badly beaten up by the people there," Atilo explains.
To people in the community, Ewunyu is "ebangi" (mad). As in many other parts of Uganda, people in Katine tend to blame mental illness on witchcraft or some other supernatural causes. Atilo's insistence that the illness started with a fierce wind points to this. People with mental health problems are, therefore, more likely to end up in the homes of traditional healers than in hospital.
Atilo says Ewunyu has been visiting hospitals for many years – mostly Tiriri health centre and, once, Soroti regional referral hospital, some 25km from the home. Medical records from Tiriri show that he was diagnosed with "epilepsy with psychiatric features and mental retardation".
"When they give us medicine at the health centre, his situation really improves," Atilo says. "He can even take several months without fits. But you see he is supposed to take the medicines every day and often the medicines run out and we do not have money to buy medicine."
For example on 24 December, Ewunyu was taken to Tiriri health centre, where the clinical officers prescribed the drug carbamazepine. However, the centre did not have the drug in stock, so Atilo's family had an anxious Christmas, fearing bad seizures. Thankfully none came.
Lack of drugs
Officials at Tiriri admit that one of the biggest challenges in assisting patients with mental health problems is a lack of drugs. "We order psychiatric medicines like any other essential drugs, but sometimes they run out and yet one is supposed to be on these drugs sometimes for life," said Samuel Malinga, the clinical officer in charge of the health centre. "And you find that the families do not have money for buying the drugs, so they wait for the next supply of medicines."
Some of these drugs are quite expensive. For example, Malinga said a month's supply of carbamazepine for Ewunyu would cost about UShs 12,000 (around $5.40). In two previous health centres where Malinga served, he helped to set up a mental health association, involving care givers and patients. The care givers paid contributions to the association, which they could then access to buy medicines when they are out of stock at the health centres. He hopes to initiate such an association for Tiriri.
When a case is too advanced – or deemed too aggressive – for Tiriri, the health centre refers the patient to Soroti regional referral hospital, which has a fully fledged mental health unit (MHU). At one time, Atilo said, when Ewunyu's fits became so intense and there were no drugs at Tiriri, they were able to get treatment from Soroti.
Commissioned in 2006, Soroti's MHU, one of 13 in the country, handles up to 500 patients a month. In March this year the unit registered 24 admissions and saw 418 outpatients. The most common cases handled here are bipolar affective disorders, epilepsy, schizophrenia and organic brain syndrome.
According to psychiatric nurse and acting head of MHU Vanice Chelangat only patients who cannot be managed from home are admitted. Some very aggressive patients are brought in bound with ropes and health workers have to sedate them before they can start them on treatment.
Yet even this regional referral unit occasionally runs out of drugs. "Right now there are some drugs we need which have already run out," Chelangat replies when asked about the major challenges facing the unit. Another challenge is poor staffing. The MHU has barely five staffers, headed by a principal psychiatric clinical officer, although it is supposed to be run by a psychiatric medical officer.
This staffing problem is a national one. Uganda, with a population of 33 million people, has only 28 psychiatrists, compared with 80 for the 39 million people living in Kenya. According to a 2008 study, Mental health and poverty project (MHAPP): a situational analysis of the mental health system in Uganda, part of the problem is that health workers do not want to specialise in psychiatry because of the stigma associated with mental illness. One official from the Ministry of Health is quoted in the study report as saying that medical students in Kampala believed that once one became a psychiatrist, they would, in time, develop mental health problems themselves.
"It was noted that some of the mental health nurses often prefer not to be identified as mental health nurses at their respective health facilities," said the report of the study, funded by the Department for International Development. "At one general hospital, it was reported that some of the mental health nurses could not withstand the stigmatisation by the fellow health workers and decided to cross to other sub-specialties, such as general nursing or midwifery."
Dr Philip Anyama, the medical superintendent of Soroti hospital, has witnessed this kind of stigma. He says that many a nurse assigned to help out in the MHU will grumble that the hospital personnel officer does not like them or they would not have sent them there.
But Anyama, who grew up in a village where an epileptic girl would be whipped when gripped by fits, says mental health in Uganda has come a long way. Thirty years ago, any person with mental health problems was either locked up in a room at a hospital like Soroti – a kind of prison that served as the mental health unit – or sent to Butabika on the shores of Lake Victoria in Kampala. Butabika was then about the only mental hospital in the country, but now regional hospitals have MHUs and people can get treatment in across the country.
Yes the challenges are there, Anyama says, citing drug stock-outs and a lack of psychiatric staff, but these are beyond the control of his administration team, who, still, are doing all they can. Every month the hospital sends a list of vacancies to the Ministry of Health headquarters in Kampala, but no psychiatrist has yet been posted to the hospital.
As for drugs, the problem stems from "the centre." Government hospitals can only get medicines equivalent in price to the amount of money provided by central government, which is often far less than the demand, leading to stock-outs. "We try to give special consideration to psychiatric drugs; even in times of crisis, we try to ensure that we have at least some of the medicines that they [patients] need," Anyama says.
The MHAPP report points out that the majority of people, especially in rural areas, believe that mental illnesses are caused by supernatural forces, such as witchcraft, and, therefore, cannot be cured by modern medicine. In 2001, the World Health Organisation estimated that up 80% of mental health patients who reported to health centres first visited traditional healers. The report acknowledges that Uganda has made progress: mental health is included in the national healthcare minimum package and the draft mental health policy has been well received. But services are still badly under-funded, understaffed and under-prioritised. Mental health only accounts for 4% of the national health budget, of which a huge chunk goes to construction work.
Anyama acknowledges that mental health has generally not received enough attention as the country concentrates on communicable diseases, such as HIV/Aids, tuberculosis and malaria. In an area like Teso, in which Katine is found, Anyama would have wanted to carry out a baseline survey to establish the range of mental illness in the region so that interventions can be devised especially through public health education. Addressing the causes. which include alcohol abuse, and targeting the superstitious attitudes of the community would go a long way towards reducing illness and improving the plight of patients. But all these things require money, which Anyama's administration does not have.
Efforts to talk about the situation with Uganda's health minister, Stephen Malinga, failed, as he could not be reached by phone over several days of trying.
But the head of the mental health department in at the Ministry of Health headquarters in Kampala, Dr Sheila Ndyanabangi, explained some of the key problems facing mental health in Uganda are the same as those in other aspects of healthcare. This is partly because the government has long resolved to integrate mental healthcare into general primary healthcare because it could not afford a separate structure.
Despite challenges that remain, Ndyanabangi is proud of her government efforts on mental health so far. Since 2000, the government has received a grant worth about $21m and a loan worth $4m from the African Development Bank (ADB) to improve maternal health in the country. This has been spent on the construction of health units like the one in Soroti, procuring psychiatric drugs and training psychiatrists, psychiatric clinical officers and nurses. The mental health department has recently been pushing through proposals that include allocating psychologists, sociologists and counsellors to MHUs, but Ndyanabangi could not say when these requests would be approved.
She, too, admits that maintaining and improving staffing levels in any health department is a challenge, as demonstrated by the fact that barely 50% of all health service positions are filled.
"At one time, she said, 50% of health centre IVs [large hospitals] in Uganda had recruited at least one psychiatric nurse or clinical officer, but there is a lot of attrition which is due to a lot of factors," Ndyanabangi says. For mental health cadres, such factors include stigma, which Ndyanabangi laments is "worse among medical workers than the general public".
On the shortage of psychiatric drugs, Ndyanabangi says that the first ADB-funded project, which ended in 2005, had a component of supplying drugs and there was some relief. Now however, with all drugs supplied by the central National Medical Stores (NMS), psychiatric medicines have not been a priority as some of them are expensive, with thin profit margins. Nevertheless her department has talked to NMS and some improvements in the supply chain have been made.
We'll have to wait to see if these improvements reach Atilo and Ewunyu in Katine.