Its funny how wonder fades to routine. The excitement and anxiety leading up to this trip has largely faded to the challenge of actual work in a foreign place. When we arrived, people literally sang out in welcome to us. While the greeting of "you are welcome" is still standard and still catches me pleasantly off guard, it has blended into our day to day here, as have the boda rides, the extremely gnarly roads, the smell of meat hanging in the sunshine, and the long life milk that sits in my humid room all day and doesn't go bad (still don't get it-what do you mean long life and no preservatives or additives!) . The cultural differences we are so struck in wonder by initially also slowly give way to the challenges of working so far away from home. All the anxieties and challenges of working in a mental health setting are with me here; relating to marginalized populations as a middle class white guy is a challenge at the best of times, doing it in Africa when you don't speak the language magnifies this factor by about a zillion. I am speaking of where Chelsea and I are placed for the first three days of our work weeks, which is the mental health ward at Masaka Regional Referral Hospital.
The first time we visited the ward, the first thing that struck me was all the people lined up against the wall on benches. Everyone seemed to be dressed exquisitely, as though for a special occasion. It turns out these are the outpatients, who often times have made the sometimes very long journey from the villages, often on foot. They have come to consult with the clincal officers (there is no full time doctor on the ward) who briefly counsel the patients and update their medication scripts. Each visitor to the ward carries a flimsy paperback notebook, usually tattered and repaired, which serves as an outpatient file and a prescription pad. The clinical officers write file notes and update the medication script which the patient then brings to the window of the medication room where the nursing staff then ration their meds. Some drugs are plentiful, however some are in short supply. For the more limited drugs, staff counts out usually 1/2 or 2/3 of the pills and advise the patients they must purchase the remainder. The drugs dispensed also illustrate the limited resources available to the people here. Most are still used in Canada in some capacity, but usually not as first line treatments for the disorders treated on the ward. Many of the drugs dispensed have not been used in the west as first line treatments in decades for the disorders treated on the ward, meaning those needing medications are sugjected to significantly more and invasive side effects. The plus side is that when the ward has the drugs on hand, the patients do not have to pay for them.
The journey of the patients from the villages sometimes takes hours, and it is not strictly accurate to state all these people as patients. Often, family has accompanied the them as well. It is also not uncommon for a loved one to have made the trek on their own to consult with the clinical officers on behalf of the patient, relaying how he/she is doing and pick up medications. One of the officers explained to me how this is not ideal. Pyschoeducation around mental health in Uganda faces significant barriers and although these family members undoubtedly would not make such treks if they did not care deeply, it is unlikely their understanding runs deep enough to offset impatience and possible resentment, if, say, after trekking for miles from the village and back, the patient displays reluctance to adhere to the medication regiment. Just as significantly, once back in the village there is not much available support around these issues. Previous mental health sensitization radio broadcasts have been cancelled and outreach visits to the villages have been scaled back to the rising fuel costs. There is also the obvious factor that when dealing with sensitivities surrounding mental health, which in Uganda, as elsewhere, are steeped in a great amount of stigma, that trusting a 2nd hand consultation to reach from a patient and back again without ingrained attitudes finding their way in may not be realistic. However, as the officer explained to me, the patients often face "natural constraints," their poverty not allowing for transport to the ward if they are in poor physical health or otherwise unable to make the trip on foot. The representations are the only way some patients' very real mental health concerns are addressed and treated, and the business of the ward is illustrative of the huge need it is filling.
It seems not big enough and understaffed, yet the ward is significantly bigger than the mere two rooms dedicated to mental health only last year. Aside from the outpatient program, the ward also hosts 20 inpatient beds. It feels like more, however, because just as family often accompanies the outpatients, they also stay with the inpatients. These relatives, reffered to often as "attendants," are relied upon for nutritional support as well as emotional. At the hospital, food is limited. A cup of porridge is served at 10am, and at 3pm, its posho (corn flour, water and salt mashed together) and beans. Anything beyond this is supplied and prepared by the attendants, although it is common for those with food to share with those without. Walking around the hospital grounds, many women can be seen in clusters preparing food over wood fires.
The ward also hosts monthly meetings of the Epilepsy Group, comprised of both epiliptic and recovered epileptc patients and their family who come together to share their experiences and support each other and speak to strategies around eliminating stigma. Chelsea and I took questions for the group to bring back answers during June meetings. I had heard accounts of how, being white and from the west, that the local population here would look to us as experts. I found this to be true in general and during this meeting a woman asked around a family member whose seizures have ceased but still suffers an intellectual disability, to which she asked us how to cure. It is difficult to be looked to in hope when you know the anwswer will take it away. We provided no answers this session, as we were clear epilepsy has not been our field of study and that we would need to look for responses. We'll have to look at how to answer that question delicately.
Although underresourced, it seems very impressive what mental health treatment has accomplished in this area of Uganda, both for patients and caregivers. The natural constraints explained to me also seem to have a side effect in that supportive relatives often choose to stick by and support their loved ones out of necessity, which has helped build such a passionate community, both through the hosptial and Uganda Schizophrenia Fellowship (more on that in a future post). While this obviously doesn't negate the difficulties, it lays a strong foundation to build a stronger system and community. I have met patients who jump at the chance to tell their story without shame to complete strangers (not to mention foreigners!). It is really a testament to the ability of the people here to overcome those big barriers and help people both get better and to reduce the stigma and misconceptions that people living with mental illnesses face here.
I had the opportunity to sit in on a few consults with one of the clinical officers. It was a very interesting process, maybe especially so because, aside from hosptial visits in my capacity as a housing support worker, I have no previous experience from Canada working in a hospital setting. There were some representations as noted above, with more than patient bringing a family member in for a first time consult. There was one interaction in particular whereby an elderly mother was brought in by an adult child around first time symptoms from the previous weekend. Considering the lack of resources and aforementioned stigma, it is very encouraging that some people are seeking help from the hosptial so immediately. I wonder about my presence in these situations, whether it has an impact on the information shared between the patient and the clinical officer, especially being a representive from the west. The interactions do seem natural though.
There is one story I found particularly striking during this consultation sit in. A patient with Epilepsy (Epilepsy is treated in the psychiatric ward in Uganda) voiced frustration that although she has been faithfully following her medication regimen, her seizures remain constant. Probing for possible triggers, the conversation turned to stress, where the patient revealed her living situation and also shed light to the extent of some of the stigma and false information around some health issues here. Essentially family and community alike have ostrasized this patient, to the point where an empty house has been given for living, so that nobody needs to share living quarters. Interaction with her is actively discouraged. I can't speak to details, but it is not uncommon to view epilepsy here as contagious or as a curse. The officer pointed to this situation as the likely reason the medication has not ceased the seizures. He pointed out also that when she comes to the hospital, she at least has briefly the oppotunity to be amongst people who do not judge her, before a brief counsel and medication refill before the long walk back to the village.
No comments:
Post a Comment