I’ve been aware of neglecting the blog for a while. And now that I want to write, I am not sure that I know what to say. My head feels congested, as if it is stuffed with mashed matoke. There’s no room for the thoughts to get an airing or become clear, to me, let alone to anyone else.
I think I am just exhausted. We’ve been back here for two and a half months since our visit to the UK for my mother-in-law’s funeral. I haven’t had more than a day off each week. My evenings have been crammed full with projects for the hospital and my days with the wards and with meetings. Our mealtimes are shared with others – there have been crowds of visitors at the guest house in the last few weeks – and the family needs me in all the other moments. Brian and I have been a tag team, trying to make sure that the girls have care and attention, whilst we try and get our respective projects tied up (*****). I need to stop and find space to breathe, and our relationship needs a bit more time as well.
This is all the challenge of entering a transitional phase. We are bringing things to their closure here, and that means reflecting on what we have done, and what gaps there remain that we had hoped or tried to fill. We struggle with the concept of leaving here where life feels lived so intensely and so fulfilling.
Yet we have committments back in Britain which we can no longer ignore. The result is that, rather than being quite so un-questioningly immersed in the hospital’s routines, a bit of my outsider-observer self has crept back, a nagging, sometimes critical voice.
For example, we had a hospital data quality meeting yesterday. It is a great thing that every month, the hospital key staff stop and review all the data collected , look at anomalies, scrutinise trends. It is very laudible and valuable to collect and to analyse this data set. But the meeting takes ages. Maybe it is having done it ten times now, maybe it is because I am focussed on the time things take, maybe because my brain is moving towards another place. But this time, I found the fact that it went on for so long pretty unbearable. There were 16 people in the room, the meeting took four hours. That’s 64 staff-hours…. a full working week. Surely there must be a more efficient way of completing this task? But who am I to say, as soon, it won’t be my problem. Hmmm….. I really don’t know what to make of these feelings. I know, too, that my current state of mind and my tiredness make me less patient and less tolerant.
Only a week ago, I was in a state of energy and great happiness. Last Sunday, we had a morning getting showered (it takes that long when the hot water needs to be boiled in a kettle), we had a lovely walk in an atmospheric storm, we felt at home amongst the hills and in the nearby valley that have become familiar to us in the past month. We shopped for fabrics, our friends came for tea. A day full of the riches of our life here. And we thought at that time, ‘’how can we ever imagine leaving this place and this community?’’
We probably need a break, and thankfully, this coming week, we will be going on holiday as a family, to explore a bit of Western Uganda further afield than we have ventured so far.
*** Brian’s projects… I haven’t mentioned these yet. He has (amongst other things, and critically, looking after the girls and teaching them), being documenting the hospital’s work in photos. He has created a beautiful archive for the hospital to use, for fundraising, for health education and publicity. We are hoping there will be an exhibition in London in the autumn of 2019
Most people when asked to think about the disease affecting this part of the world might (rightly) come up with HIV, Malaria, and TB. And these abound, to be sure. But as some of these are brought into line, other patterns of illness emerge, particularly chronic diseases like diabetes and hypertension (high blood pressure.) These illnesses are less ‘charismastic’’ than infectious disease, but they have a huge impact on people’s quality of life and their ability to function in society. They are also increasingly the cause of death, accounting for 27% of deaths in Uganda even now. I’m a GP. I’m quite interested in these. Chronic disease management is our bread-and-butter. I’m also interested because I like thinking about systems. I think of the problem of disease control like this. If you want to control an infection, you probably need to find a good drug, or a good vaccine***. But to control a chronic disease, you really need a good system.
Once again, our hospital is at the cutting edge of thinking about this in a rural African context. Every adult patient who comes to the hospital has their blood pressure checked when they arrive at the out-patient’s department. People who have persistently high blood pressure or who are found to have diabetes are referred to the chronic care clinic. This clinic takes place once a week. A nurse and a medical officer review people’s blood pressure or diabetes, check their diet, check that they understand their medication, provide more tablets or make adjustments to the dose if the clinical parameters are not well controlled. There’s an digital template for entering all the data so that each person’s records can be followed from visit to visit.
There are some gaps, though. Some problems are with what we can do here at the hospital. For exampe, there is a really simple blood test for diabetes that can tell us how well a patient’s blood sugar has been controlled over a period of three months. It’s called HbA1c. It is cool because it is such a simple idea. It measures how many of a patient’s red blood cells have a sugar coating and gives the answer as a percent. As red blood cells last a long time, up to three months, it can tell us whether the patient’s blood has been a very sugary solution (poor control), or a nice slightly sweet one (good control). High blood sugar determines the negative outcomes (kidney failure, sight loss etc) in diabetes so this is critical information for the doctors. There are even near-patient test kits for this (that don’t need to be done in a lab, they can be done in a clinic) – but we don’t have these or even the lab test. Even if we had the machine, the consumables, like test strips can be exorbitantly expensive. So in our clinic we have to rely on measuring the patient’s blood sugar at the time they come to clinic. This might be low, because they haven’t eaten in the morning because of coming to clinic, or high (because they’ve had to wait to be seen, so they have just eaten a banana) – so making an assessment of whether someone’s diabetes is well controlled has an element of guess-work. There are other excellent (and simple) tests, like a little mono-filament which can be used to check the sensation in people’s feet. It would be great to have, but we don’t. Incidentally, foot care for diabetics is really important. Anywhere in the world, but importantly here. If diabetes is not well controlled then people loose the sensation in their feet. Here, where most people walk without shoes, having poor foot sensation is risky. If you step on a thorn and don’t notice, and then in some animal dung and a bit of mud, it is a recipe for an infection that can spread, and lead to gangrene (and then to amputation.) Taking care of all these things matters. Eyes are important too. Diabetics can get cataracts and damage to their retinas. Loss off sight means loss of independence, and has a direct impact on the patient and those who care for them. We don’t have enough eye care staff to test everyone who needs it.
Just as some of the problems are challenges for the facility, some of the challenges about chronic disease care are to do with what the patients can do. There may be little understanding of how diet can influence health, or people simply can’t afford or are too bound by habit to change their diets. Sometimes patients can’t come to the clinic when they are scheduled to do so. It can cost a lot to come from far in the district to reach the hospital. So they may only come once they have run out of tablets. And so we ask ourselves, is their high blood pressure because they haven’t had tablets for a few days, or is it because their tablets aren’t working? Sometimes patients have to pay so much to travel to the clinic that they have little left over to pay for their medication. THey collect enough supplies for a month because that is all they can afford, whereas if they had the funds, they could take three month’s worth home and not have to come to clinic again for a longer interval. Or they may not have enough money to pay for monitoring blood tests. Of their home may be in one of the more hard-to-reach areas in this already hard-to-reach district. The only transport available may be by boda-boda. And travelling by this means for an hour or two may not be feasible for a frail elderly person.
So, managing chronic care in this setting is fraught with lots of interesting challenges, both medical and practical. It makes it really interesting.
This is one of the things I have been thinking about during my time here. And after a careful review of the data from the clinic, a research study has been proposed to explore some of these issues in more detail. I hope that this might lead to some transformation of the service into the future. It would be so exciting to see care devolved from the hospital to the level of the community and from a centralised approach to one that is devolved outwards and truly patient-centred. But that is for others to do.
*** Yes, I know, control of infectious disease also needs public health systems…sorry, public health colleagues for a crass over-simplification
I realise that these posts have been very hospital-focussed. That’s because our life here has been very hospital-focussed but to go without describing our local village and our local community would be a major omission.
So, Bwindi hospital is in Buhoma (village), Bwindi being the term used to describe the area generally, and certainly the term which is used in the tourist sense. We found this really confusing when we got here. “Buhoma?” “Where is Buhoma? Oh here?” “Then where is Bwindi?”
Everything – geographically and economically revolves round the National Park (which is the impenetrable forest.) It’s a funny shape. The park gates serve as the end of the road, though the forest can be crossed by foot (in about 6 hours) to get to the other side and to another district called Kisoro. If you chose to drive to Kisoro, it will take much longer by beautiful mountain roads along the edge of the forest. So, my guided tour of our home village starts at the park gates which is the highest point you can get to in the valley in the car.
Just outside the park gates is the village of Nkwenda. The main road here is lined with kiosks selling gorilla carvings and paintings and fabric, and offices advertising community walks, or orphan projects (with orphans dancing for tourists……..). Folk of Nkwenda are used to seeing tourists, speak good English and know how smiles win sales. Back down the road (back down the valley) you drive towards Buhoma. The road is beautiful as the valley floor is on the right hand side, and the slope beyond it on the far side is completely forested. In the floor of the valley, and on the lower slopes, are settlements and small plantations of bananas and crops. The river and the hydroelectric plant nestle there too, though you can’t see them from the height of the road . The trees on the forest side are elegant with their white straight trunks, and the canopy is bushy and lush. Some of the trees are in flower, giving a creamy dusting to the tops, and a mixture of other colours at times. They rise up to the undulating ridge that forms the horizon.
Follow the road down the road past the tourist lodges – “Trackers” (an up market lodge with a posh swimming pool where they won’t let us swim), “Volcanoes”, “Engagi,” ”Mahogany Springs.” Then down towards Buhoma and another class of lodges for more local visitors. Then the road dips down towards the centre. The ”Highway” bus is parked on the side, with people washing it, changing the tyres, doing repairs on it as it rests between its 14 hour hauls to Kampala. On the right is the gym and then the sign to Monkey House – our hospital guest house, our second home, our place of companionship and rest and fun.
On down the hill to the junction – the most important junction because the road to the right leads to the hospital. The junction is the centre of things. Here is the boda stand, where the motorcycle drivers stop with their vehicles and wait for passenger. Here is the bar, the “Good Shed” bar, and the chippati man and the roasted sweetcorn, and the kebabs. There has been building work behind the boda stage since we arrived, so there are piles of sand and bricks to negotiate as you walk through. It is also the home of the ever-noisy, every busy, weaver birds who chatter relentlessly.
Next is the supermarket. This wonderful place brings comfort to our lives. It’s been here for a year, I think, and (usually) has supplies of bread, biscuits, fizzy drinks, tomato puree (essential for sandwiches on the sweet bread) and even, sometimes. cheese! The cheese is round and called Edam which is a nice euphemism for something salty and cheese-like. It is kept in a deep freeze, next to the meat, sometimes not wrapped. When I pick it out, I say a little prayer that the power hasn’t failed and the meat hasn’t defrosted its juices onto the cheese. So far so good. Sometimes the supermarket has dairy milk chocolate and sometimes raisins. These are for an eye-watering price. But sometimes it is worth it, just for a taste of the familiar.
Opposite the supermarket is the “excellent drug shop” which is indeed excellent as it appears to have everything I have looked for there, even if I cant find it in the hospital. Next is the track up to the ‘proper’ market. The Market itself takes place on Saturday afternoons, but, during the rest of the week, there are still several permanent stalls selling pineapples and cabbages and sweet potatoes and yams and tomatoes and bananas. We get our veg from a lovely lady who rescued the girls when a massive storm caught them off-guard in the market, and the market turned into a muddy river with no way to get out. She took them into the hut behind her stall and comforted them. She’s had our market business ever since.
On Saturday by mid afternoon, the market has come to life. Beyond the veg stalls is the meat area. Everything is outside. There are goats hung up, slaughtered and draining blood, various cuts of leg and body of beef and goat. There are, knives, pangas, slabs with lumps of fat congealed on them, flies, puddles of blood, dogs, weighing scales, bustle and salesmanship. Behind all these, the temporary framework of stalls are covered in blue plastic sheeting so people can shelter from the sun or the rain. In the stalls, clothes are piled for sale – they look like piles from European jumble sales – white shirts, black trousers, skirts, sheets, fabrics, socks. Then there are stalls with flip-flops and shoes for school, one that sells light-bulbs and solar panels and batteries, there are ladies selling banana fritters and other goodies. There’s a hustle of men in military fatigues who come down to a little camp from the border post on the ridge. And there is our friend, Godfrey.
Godfrey has a dignified appearance, and imposing frame , a thoughtful smile and glasses, and he sells smart shoes. We first met Godfrey when we were invited to attend a wedding and the girls had to be bridesmaids. We had to find ‘smart shoes’ quickly and Godfrey came up trumps with shiny patent leather affairs for both of them. Godfrey buys shoes in Kampala and sells them locally. He has realised that Mzungus have a soft spot for birkenstock sandles and can’t resist the non-European prices. Miss A and Little Roo have built up a striking collection of high quality (second hand ) footwear since they have been here, and become Godfrey’s friends in the meantime. Godfrey like so many here is overqualified as a travellilng shoe salesman. He has a masters degree in Business administration and excellent proposal writing skills. But around here, there are few employers for these skills, so for now, he uses his acumen in entrepreneur-ism and developing his own NGO.
There are two more crucial businesses on the rutted path up to the market from the centre. There is Ruthy, the tailor, and Bright and Ellen’s vegetable shop. We met Ruthy whilst meandering through the village soon after we arrived. We were drawn to the lovely items in her shop. I have a brown and yellow dress to show for it (!). And she has, in the months we have been here, made the girls a number of really beautiful clothes. Our shelves in our home are filling up with fabrics to take away courtesy of Ruthy. Next door, Bright and Ellen have a veg shop. This is an outpost of the hospital as Bright (who has a qualification in agricultural engineering) manages the hospital’s vegetable garden. The profits from the vegetable sales go back to the hospital, and the range of vegetables is a source of greens for the community and place for nutritional outreach. It’s dark inside (there is no electricity) , on the ground there is a pile of potatoes a metre deep. There’s a shelf with pineapples and another with water melons. Passion fruits are kept behind the counter, five for a thousand shillings (20 pence.) Ellen has a brass weighing scale for measuring which the girls delight in using.
Then there are the people. Doorways to the shops are always open, People coook and chat outside their stalls and the kids run between. Boda’s rush past. The hospital staff wander into the centre after work just to look around, the nursing students too.
A visit to the centre means meeting and greeting a dozen people and catching up on news. It means dodging tea lorries and avoiding the rubbish in the muddly runnels at the edge of he road. It means keeping clear of the tourist vehicles hurrying up to the safety of the lodges. It means stopping by the weaver birds tree to look at the nests and hear the crowds. It means looking at the highest posts to see the Maribu stork presiding over it all like a huge dirty folded-up parasol. Mums with babies on their backs, men with tin sheets balanced on their heads, someone reeling drunk across the path, old Batwa ladies with no shoes, kids in uniform, former patients.
On down, down down, past the mechanic, past Anna’s Gorilla tailors, past Winnie’s boutique and Isaac’s hair salon. Past the shop that sells blankets, and then the iron-mongers, the stationers that sells agricultural pesticides, past Aunty Peace’s house and Dennis’s hair place, past the nursing school, past the many bars and night-places .
And then you leave Buhoma behind you, on down the road to the villages Kanyashande, Kyeshero, and the towns of Butogota, Ntungamo, Kanyantorogo, Kihihi and beyond. This is our world.
Our A +E emergency room has three bays, separated by curtains. Today I was in one of the bays, tending to the needs of an unwell tourist. I could see that the baby’s cot in the next bay was occupied by a toddler, and by the body language of the nursing staff around, I could tell something serious was going on.
As I checked my patient’s ears and throat, I heard the unmistakable sound of cardiopulmonary resuscitation taking place at the baby’s cot. Two breaths, 30 chest compressions, two breaths, 30 chest compressions. Two breaths, 30 chest compressions.
I kept up the chit chat with my patient, made a diagnosis and sent her on her way.
The noise from the cot behind the curtain stopped. I peeped around. The baby’s grandmother was drawing the little white blanket over the baby’s face. It was dead. The grandmother picked up the swaddled dead baby, and cradled her close to her chest. She stayed only a few more minutes then went away, carrying her bundle of sorrow.
Apparently the baby had been vomiting, and so the grandmother who had been left in charge, gave her a tablet that she had in the house. The baby must have choked on the tablet, because almost immediately it had stopped breathing. The family had come on a motorcycle a distance of one hour by road with the not-breathing baby to seek help. It was too late to save her.
I stop for a moment, catch my breath, then carry on with my day. How can I even begin to think about something so terribly sad?
I realise I haven’t written anything since being back in Uganda. How could that possibly be?
We had a looooong journey here. The flight seemed long, the night in Rwanda (when the rain came in through the roof) was long, the road through the forest was long.… Was it all the right thing to make this journey again, I wondered?
When we arrived, it all fell into place . There was no doubt.
It was absolutely the right thing to be here again. We were greeted with warmth by our friends. As we got out of the car, our neighbours welcomed us with open arms. People knocked on our door, the phone rang. Back in staff quarters we found ourselves once more in the middle of our warm, vibrant community. We went to the guest house to have supper. More friends to greet, news to share. The girls disappeared into the surrounding vegetation with their friends to look at the dens under construction.
This was coming home.
Within twelve hours, I was back on the wards, working. But this time with a few more doctors to help make the team feel more robust and sustainable. Dr Gideon, the previous director of Clinical Services was back after a year spent specialising in laparsocopic surgical techniques in India. We had a wonderful paediatrician for a week (using his leave from his usual place of work to come and help us out.) It felt good. It feels good.
I’m busy all the working day. There is the ward, there is out-patients to support, there is a chronic care clinic to support, there was an afternoon full of gynaecology today. There are wounds to suture, procedures to perform. And somewhere in amongst all of this, there are new services to start, protocols to draft, training to deliver. I am not sure how it will all fit in.
There’s time for play too, not just with the family. Brian has started a chess club, and I have had the honour of being initiated into the BCH scrabble club. There is nothing simple about the scrabble. It is cut-throat competitive and the skills of my friends have been honed to a tee. Every allowable two letter word is well rehearsed, and all the three letter works that contain an X.…. I am well out of my league. From time to time, it is a real pleasure to laugh heartily, eat popcorn and care only about the seven letters in front of me.
I am writing this with a scarf tied around my neck, and two woollies, a hat and waterproof over-trousers on. I am sitting on a bank of a steam watching the daffodils nod in the wind and the clouds scud overhead, and the children are scrambling over rocks. Exactly a week ago, I was sitting by another stream, whilst the girls and my colleague Enock waded in the water, and butterflies rose in clouds around us. That was Uganda, and now we are in England. What a lot can happen in a week. It is all a bit perplexing.
At one level, it wasn’t entirely unexpected. Brian’s elderly mother became much more frail over the autumn and winter. We decided he should go and visit her. He arrived in early March and it was clear that she did not have long to live. Brian was at her bedside when she took her last peaceful breath..
I arranged for the girls and myself to fly back to the UK for her funeral and to be with Brian. We were once again in a mental space that had to bridge continents, one which involved thinking about airports and tarmac, and timelines and supermarkets and responsibilities we had been able to put aside for the last many months.
We left early on Tuesday morning after a lot of warm goodbyes. Little Roo stood up in Morning Prayer and made an announcement to all the assembled staff about our forthcoming travel, we had a final (for now) supper with our friends, people popped round, we shared out the fruit we had left in our house.
It felt odd to be leaving – somehow breaking a contract of being there. I felt somehow guilty to have the option to walk away if something was difficult. That isn’t an option open to most. We took the forest road to Kigali – it’s closer to fly from Rwanda than to go to Kampala. Whereas our last trip through the countryside was mesmerising and baffling, this time the landscape made sense. I recognised names of villages and points of reference. There was our hospital clinic at Byumba. There was the village my patient came from. It was fabulous.
Being in England is not at all straightforward. We have no-where that is home at present, and the tasks facing us are emotionally challenging – preparing for a funeral, and going through the belongings of my late mother-in-law.
I have also been home to my mother’s house in Oxfordshire. I feel as if I am a time traveller. Everything is so familiar. This is the house I usually visit twice a week, calling in, fetching the girls. It is all exactly the same as when I was last here. Now when was that – was it just a few months ago? or a whole lifetime ago…. ? so much has happened and so much inside has changed, and yet the material that surrounds me is just the same.
And back in our Ugandan life things have become more complicated too. Our Ugandan home is very close to the border with Congo. There has been an issue that has made us reflect a little more rigorously about the risks there are of living so close to the border of one of the most chaotic countries in the world. One of our abiding sensations as a family in Uganda is of being safe and secure. With a time away from Uganda to reflect on our lives so far at BCH, we can see how transformative our time there has already been for all of us. It has been a place of so much community, so much happiness, so much biodiversity, so much opportunity, so much to treasure, the chance of ‘making a difference.’ Will these concerns change how we feel about our Ugandan home? We desperately hope it won’t. We all want to get back there very soon.
So our minds are full, and we are trying to find a way forward for ourselves, thinking about loss, closure, openings and belonging.
There are ours, of course, then the small children with whom we share staff quarters, our American friends at the guest house, the children of all the other staff, the children who live opposite and who greet us every day as we walk home, the children who follow us if we go for a walk, the children who join us when we are down at the river, and the Batwa (pygmy) children who come furtively into the grounds of our accommodation to rifle through the rubbish and play in the drains. Children, children everywhere.
In the local community where we live, it is the norm for families to have five or six children. This is a combination of (very) early average age at first pregnancy, and lack of contraceptive uptake. This in turn is the result of fears and misconceptions about contraception, and ultimately, from the imbalance of power between men and women. So, people have many children, often more than they might want. From my adult outsider perspective, childhood around here looks pretty tough. Very small children round here are often in charge of siblings, or in charge of animals, or fetching, carrying, hoeing, or just left to their own devices whilst their parents (their mothers) get on with the gruelling work of scraping together enough to get by. It appears that children bring each other up. On Sundays (the day of church, and rest) children are more free to play, and I see the older ones dressing the younger ones, helping them on tricky bits of the path, helping the others cross the river. Amongst the boys, there is a lot of rough and tumble, a lot of hard knocks. But there is a lot of fun, a lot of resourcefulness and a lot of freedom, to be roaming in bands, stripping off to jump in the river and splash around. And not an adult in sight.
Our region is home to the Batwa people. They were the original forest dwellers of this area and are ethnically different to the local Bantu population who are the Bagika. The Batwa are true pygmys – they are indeed very small. When the national park was gazetted, they were displaced from their traditional homes and lost their traditional way of life. Like many minority groups who lose access to their land (think aboriginal people in Australia, for example) the resulting destitution was very damaging. The community struggles with problems of extreme poverty and landlessness and the consequent risk of alcoholism and violence. They are very very poor. Their best source of income is dancing traditional dances for tourists. I fear that much of the money earned is easily drunk away before it can be used to buy food for the household, and the children can fare badly. The ones who we see near us are ragged and malnourished. They hunt for food scraps in the waste from the staff houses, they relish anything they are given – a fresh mango or banana – as if it is a jewelled treasure. It is heartbreaking.
For the children of staff at the hospital (essentially a middle class), it is another story, and another set of considerations for the parents. Our neighbour’s children are all young, about five years old and under. At the moment, it is the long school holidays, so the children are around the staff quarters in the day, finding ways to entertain themselves in piles of sand, or chasing the chickens. For their parents, children are a heavy economic investment. Nurses work shifts, so it isn’t enough to put their children in nursery in the day, as then who would look after them in the evenings or at night when their parents (often mothers again) shift patterns demand it? The solution is to employ maids. The maids have a busy time of it, cooking for the household, doing the washing, the sweeping, and the childcare. And yet their pay is limited by how much the nurses can afford to pay on their own respectable but still modest salaries. So the result is that the maids are often village girls (some only just into their teens) whose skills in childcare can be limited to what their own family responsibilities have taught them.
Child rearing is very much a collective effort. Children in staff accommodation can be fed, chastised, washed, entertained by any of the adults who may be around. And this also means that all the children expect to be able to be part of all the households. It’s expected that the door will be open, and the children generally expect to be able to go straight in.
For Brian and me, our relationship with our children is one of the obvious areas where we are most strikingly outsiders and odd in a Ugandan community. We want to spend time with our children alone sometimes rather than always being surrounded with by other children too, so sometimes we close our door and send other children away. I do this with mixed feelings and a heavy heart, as I know our home and our toys and our play are so appealing to our small neighbours. Maybe we are perceived as selfish? I’m not sure. I suspect we are seen as mollycoddling our children far more than would be the case here. It is a delicate balance between meeting our needs as a family and spending time with our children who are making sense of their new experiences, whilst learning to be part of this community and the shared living that goes with it. Something we are trying to navigate as we go along.