Today was a day that we organised for the team to split up into separate groups - dividing and conquering:
The majority of people returned to Bombo to see a few complex patients (including Kirsten's gentleman with HIV and a very large spleen) for further follow up after they had been referred for different investigations. They were also able to spend time with the sponsored children at Way of Salvation School and Simon played guitar to all the classes, singing with them. Some of the team were able also to go to St. Luke's Hospital, which is a place we have referred many of our patients to for investigations from our clinics so it was useful for them to find out about the facilities there. Some others were able to go to the homes of their sponsored children, enabling them to spend some relaxed and quality time with their families, in addition to finding out more about their social circumstances.
3 of the team went to visit the main centre for Hospice Africa Uganda and had a fantastic time learning about the Palliative Care team and how they made their own Oramorph (oral morphine) for the whole of the country. They get the powder from Hungary apparently! The team care for people with cancer and HIV related illnesses mainly. They provide a wonderful service that is not dissimilar to what is provided in the UK, but with fewer options of medications and do not have patches or syringe drivers. Sarah had researched the hospice after meeting people with terminal illnesses in clinics and, with her own background in palliative care, sought to find support for them.
I went, with 3 others, to Butabika National Mental Health Hospital, which, I'm afraid, I will now spend the rest of the blog waffling on about as it was a fascinating experience yet terrifying to discover the atrocities that people with mental health problems experience here in Uganda.
Butabika is one of the very few mental health facilities in Uganda. Uganda spends 9.8% of gross domestic product on healthcare, but less than 1% of this goes into mental healthcare (compared with 10% in the UK (World Health Organization, 2016)). Ugandan mental health services have been characterised as inadequate, with little or no community care and in-patient services that are unable to meet demand. The World Health Organization (2006) estimates that 90% of people with mental illness receive no treatment. The situation is exacerbated by many skilled healthcare workers leaving Uganda to work in high-income countries, reducing what had been described as a highly skilled and motivated workforce.
The word "Butabika" translates directly, I am informed, to "loony", so the hospital is effectively called a "loony bin". Established in 1955, it had 900+ beds, but this number has significantly reduced (down to around 550) since other regional mental health centres have been built. Unlike Butabika, these are run by physicians associates (qualifying after a 3 year degree) with only monthly consultant supervision and room for around 25 patients in each centre. Although the bed number has reduced, the demand has not and Butabika has around 750 inpatients at present. When we discussed with a "service user" regarding her stay and the number of beds, she replied "beds?" She then explained that most slept on the floor or with many to one flea/ lice/ bed bug infested mattress. Many homeless people end up in Butabika as there is nowhere else for them to go and, continuing the vicious cycle, people who have been mentally unwell (even if they are now recovered) find it extremely difficult to find employment due to significant discrimination, so often end up homeless. Unfortunately, they are the source of many pest infestations, even though the wards are fumigated regularly.
Butabika Hospital consists of multiple red brick buildings surrounded by green grass and trees. This aesthetically pleasing arrangement seems an odd juxtaposition to some of the struggling patients, draped in ripped green uniform, who have been allowed to wander out (often with festinent, Parkinsonian gaits due to medication side effects) of their wards and around the land, chanting, gesticulating, welcoming us frantically or even screaming. We were able to look briefly into the "Convalescent" open female ward only, which was for the recovering patients. Most patients were outside on the grass. This left an empty dormitory, with about 50 beds all jammed into it, touching side by side, and top to bottom, giving a Florence Nightingalesque feel to the place. It is no wonder how infestations spread in this environment.
We peered at the acute adult wards, surrounded by their strong fences, from afar, and could see many patients at the fences, peering back at us like caged animals. The Child and Adolescent ward had a wonderful playground built on advice and with help from a team in East London. Unfortunately, the children seemed too somber to play on it and most were sat around, very still and looking down. One of the consultant psychiatrists who kindly showed us around Butabika advised that many children with learning disabilities would be abandoned, then picked up and brought to Butabika. Many patients are treated for epilepsy also, as this condition is treated by psychiatrists in Uganda instead of Neurologists. There is also a private facility and an outpatients department in Butabika.
Through Dr. Baillie, a brilliant consultant psychiatrist in East London, I developed contact with Butabika Recovery Camp, a project that he has helped alongside the charity, "Sharing Stories" (https://sharingstoriesventure.com/). This is Uganda's first rehabilitation centre that aims to help empower inpatients at Butabika with knowledge about their illness and coping skills, along with teaching the patients sustainable life skills, thus improving their sense of self-worth - an incredibly important feat due to such high levels of stigma directed towards them. We met 4 peer mentors who had all been "service users" in Butabika themselves. One explained that she had no insight into her illness until a peer mentor discussed their own experience with her. Therefore, she now understands the importance of "sharing stories" between "service users".
I was, however, shaken to my core when listening to the team's stories. They described the horrors that they, and many other Ugandans with mental health problems, suffered at the hands of witch doctors, traditional healers and pastors. One pastor in particular was described, who is paid by families to "exorcise" many people suffering with acute mental illness, while he keeps them chained up, naked and sometimes beats "the demons out" of them. One of the service users that we met stated that his sister was there at this moment in time. This made me feel physically sick. Thankfully, Fresera, the beautiful daughter of the charity founder, John Bunjo, was also deeply affected by this and her father has great status in and around Kampala, so she aims for him to meet with the pastor and try to rescue his poor victims. Although I longed to march over to this pastor immediately (strangle him) and attempt to rescue the victims myself, I was advised that I would struggle to change anything as this pastor is so ingrained into the community. When conditions such as Bipolar Affective Disorder, spontaneously resolve or convert to depression from mania, the pastor and community believe that he has been successful in healing the patient and therefore this terrifying fallacy is perpetuated. It appears that many people have turned to spiritual or religious leaders to heal mental health problems due to the lack of education regarding mental health problems. We were told that, although the government provides free mental health medication (usually in the form of Chlopromazine, Trifluoperazine, Haloperidol or Carbamazepine), so few people have access to mental healthcare that many medications are burnt due to expiring prior to use.
It is not all awful news however, as the team spoke of changes to the hospital already. After input and training organised by the East London psychiatrists, all batons have been removed from mental health wards (due to patients previously being beaten as a way of restraint). Safer and kinder restraint methods are being delivered therefore and the hospital continues to try to improve it's care of patients. A new bill has been introduced into Uganda, which states that "service users" should not be stigmatised against when looking for jobs and gives clearer and more compassionate guidance on treating patients against their will. In fact, we met a very smiley patient from the forensic ward (who consented to his photo being below) who was recovering from Schizophrenia and we sat and talked to him as he sewed a zebra! The Recovery Camp holds many creative groups for the inpatients and then the charity, "Sharing Stories" will sell the products on. This enables the service users to feel empowered and employable, in addition to allowing the Recovery Camp to continue to run.
I was both fascinated and mortified by my trip to Butabika today. The work at the Recovery Camp seems brilliant and the hospital is trying to improve its care of patients but faces many challenges including financial support from the government and fighting stigma in order to get patients to be treated properly. I will stay in touch with the team at the Recovery Camp as I feel that their project is incredibly beneficial. Hopefully, we can coordinate some education in Bombo, Ssanga and Nakaseke together.
