Category Archives: Health & Uganda

This Lopsided Earth

Ugandan baby

Scan after scan after just-to-be-safe scan

The Risk of just-born jeopardy,

Entirely absent from my pregnancy plan,

Concealed by the masters of modern medicine.

Launching oft-futile guerrilla assaults;

Striking in response to the misstep of man

Rebellion against the promised assurances

of midwives and monitors and surgeries and scans;

But rarely a success in battle.  If it occurs:

there is shock, and shame, and blame, and a cry

That ‘no child should die’!

No baby should lie

Without a life to satisfy

 

But in the occupied territory, where risk reigns in little lives:

Over the great chasm of access and supply

Faintly, if you have ears eager to listen to the cry

And block out the lapping of luxury at your heels

And make room for what this dystopia reveals

And pierce through the privilege that cocoons your truths…

 

With each live birth, each safe passage to our world;

Comes the quiet grief of a mother’s tears

Sidelined by other-ness and foreign fears

Whispering of sweet promises unkept

Until, with un-lived memories; she wept

Wept for the babe, their newness now gone

Wept for a health system she cannot depend on

Wept for the vacuum of drugs, staff and cars

Wept for tiny hands, now safe in the stars.

 

Geography seals fates for these babes, and thus;

They’re torn from women who, despite the distance, are like us…

But with sad acceptance of their world;

Where children do die

Where babies do lie

Without a life, to satisfy…

In a world where risk is always nigh

 

No just-to-be-safe scans, no monitors, no available staff

The certainty of risk beyond our comfortable grasp

A gamble for mothers, who bet on their own hearts;

A gamble unseen, unheard by us; their counterparts

A gamble, in Uganda, which mothers’ lose,

If only there were other choices to choose….

On this lop-sidedly serviced earth,

For every 19 Ugandan babes?  1 ill-fated birth*

 

A little story behind the poem:

I started writing this poem a few years ago, when a staff member at MH lost his newborn baby. It was him and his wife’s first baby, and the grief seemed to swallow up our team for a few days. I remember the jarring nature of the baby’s death, some 12 hours after birth, when staff were still celebrating the original message that he and his wife had welcomed new life into the world.

It was tragic, and mainly left unexplained. There was deep sadness. One of the things I love and find frustrating about Ugandan culture – in equal measure – is the passive acceptance of, and embracing of the world as it is with all its suffering. It seems to allow Ugandans the ability to grieve well, and then rise up out of the ashes, resilient as ever. In the same breath, this acceptance often prevents a critique of the source of the suffering; so often relinquishing the possibility for questioning and change.

This particular little baby died in a big hospital; all seemed fine until it wasn’t. MH doesn’t offer maternity – we don’t have space or resources to do so – though we hope to in the future. But the lack of quality maternity services in our region, juxtaposed against the incredible obstetric/neonatal care available in Australia that I have been lucky enough to access with my own births, will always stay with me, and drives much of our passion in the journey of MH.

*based on 2017 infant mortality rate of 54.6/1000 live births

Blood: It’s complicated

An anxious mother stumbles into the clinic, carrying a fragile bundle wrapped in blankets and a faded kitenge. The baby boy – perhaps younger than one year of age – is breathing heavily and seems frighteningly pale for an African child. The MH triage nurse takes one look at the child and ushers them towards Maranatha’s version of an ICU, although it has none of the machines and gadgets one would find in an ICU in the west. As fast as can happen in a Ugandan setting, with a culture of people who cannot be rushed, the child is examined by a clinical officer, is cannulated, tested for their blood type, and then (with relief) the lab staff report that they have some blood available from the child’s blood group. The clinical staff let out the breath they were unaware of collectively holding, and everyone carries on doing the work that needs to be done.

In peak malaria season, this scenario may happen a few times a day. A common complication of severe malaria – especially in children – is anaemia.

I’m not a clinician. But basically, in this context, where severe malaria is really common, regular access to donated blood is essential. At MH, we sometimes transfuse several units of blood every day. Blood transfusion for these children is powerfully and phenomenally life-saving.

So, blood is important.

It is also frustratingly difficult to get our hands on sometimes.

The other day we had a call from Bundibugyo, a neighbouring district 60kms away. A child that had been taken to a hospital there needed a transfusion, and was extremely sick. Before the parents traveled, they decided to call ahead to the regional referral hospital, which is also in Fort Portal. They did not have blood. They then called another big hospital here, a Catholic hospital, which also had no blood. Then they called Maranatha. Our lab tech quickly checked the fridge and to our great relief, there was 1 unit of blood left, and it was the blood type of the boy. We told them to come. A rare win!

Every few months, MH invites the blood bank in FP to do a blood drive at the MH clinic, and we try to get as many units as possible donated. It’s quite a community day, actually, and fun.

The blood banks across Uganda, including the one in Fort Portal, were funded in part by some significant donors. But the donors have recently pulled out, and most of their funding is now from the Ministry of Health. With two old vehicles, and a small team of staff, they are expected to find enough units of blood to service about 8 districts – probably more than 5 million people. The blood bank is now expected to find this blood – miraculously – with no budget for transport and reduced staffing levels.   There are some pretty substantial challenges beyond the obvious time and resource constraints: there is not a culture or awareness in the general community around blood donation; there is no social pressure or reward for donation; with the majority of people poor farmers, people do not have time or resources to commute to give blood regularly; and with HIV (and other STDs) the highest in this region of Uganda, there is a substantial amount of blood that simply cannot be used, even if collected.

This epic wall of barriers to donation culminates in the variety of stressful situations we often have at MH, where there is just

Not. Enough. Blood.

When we are busy at MH, often our lab tech will find himself down at the blood bank a few times a week, begging for another unit. He will call the staff with the keenness of a 15 year old girl having her first crush, racing to the blood bank the moment there is a rumour of a few already screened life-saving-units ready to go. He knows all of the staff there by name. In emergencies, when there is really nothing left to do, we will send family there to donate and then wait around while the blood is tested and bring it back to MH. Of course, it was much more difficult in Kamwenge days, when collecting blood from the Fort Portal blood bank sometimes felt like an episode of the amazing race. We needed to send an esky with a public taxi from Kamwenge, with the request for blood signed by a certain MH staff. After bargaining on the price of this ‘service’, the taxi driver would take the esky to a supermarket in fort Portal town that had agreed to store a few icepacks for us, and then take it to the blood bank. Someone from the blood bank would pack the units for us (once they were available) and then organise another taxi driver to take the units back to Kamwenge, often tied on the roof of the vehicle. Once it arrived at the taxi park in Kamwenge, we would get a phone-call and go and pick it up, normally in a desperate rush knowing there was a child on the very precipice of life itself.

Basically, in a word association game, if someone mentions blood and Uganda, my immediate thoughts go to frantic phone conversations, empty fridges, the oxymoron of pale-black-children, and our shabby red esky that has been thrown into the work ute ready to collect blood from the bank on about a million occasions. Then comes to mind the afore-mentioned pale-black children’s chubby legs running around the ward a day-or-two later, defying the odds of the malaria gods by being an under-5-Ugandan-patient brimming with life.

The government referral hospital does not have the same record of transfusion as MH though. Their not-so-reliable transfusion record has been the focus of many a Ugandan’s frustration. To offer some context, the public health system in Uganda is broken. Staff often simply aren’t there, equipment is broken, drugs are often not available or shifted to ‘private pharmacy’s’ within the hospital, bribes are the norm, rooms are extremely overcrowded, health staff have low morale and some simply don’t care….

In this scenario, one can imagine there is much that could go wrong when a patient is in need of a blood transfusion. The stories that I have heard when quizzing friends and our own staff about their experiences when in need of blood are numerous and horrific: clinic staff demanding payment for blood, blood expiring in the fridge while people wait in the wards in need, patients being sent to private pharmacies in town to purchase the basic equipment lacking to give blood, unqualified staff overseeing the process or staff unavailable so the blood is never transfused…

All of these issues are of course irrelevant when there is almost no blood available, and so much demand, as has been the case in the past few months.

A few weeks ago, one of the Ugandan newspapers published a story reporting that recently at the Fort Portal referral hospital, 8 people died in ONE DAY due to a lack of blood. This, understandably, created a political storm of sorts, so much so that the Ministry of Health sent some high-ranking officials in expensive suits with shiny cars to Fort Portal to find out what indeed happened. Trying to understand what the problem is, so that it can be fixed.

But there are no easy solutions.

I wish there was.

The solution is for people to be free of poverty

The solution is for the government health system not to be broken.

The solution is for the Ministry of Health to take seriously their mandate to provide basic services to the population, and to be held accountable to this by an educated, politically engaged population.

The solution is for malaria to not be endemic in this population and take tens of thousands of children’s lives every year

The solution is for people to come to the health service earlier before they become anaemic, confident in the knowledge they will be looked after well.

The solution is for the culture of blood donation in the community to be changed

The solution is for more funding and greater resources and better systems and services

It’s one of the most all-consuming realities that I have experienced and have been forced to eventually embrace (kicking and screaming) while working in the developing world.

The frustration of discovering that poverty and disadvantage is complicated. And systemic. And cultural. And contextual. And economic. And political. And relational.

It’s just plain hard.

Blood is a beautifully tragic example of this.

If anyone tells me about an ‘easy’ or ‘simple’ solution to poverty and disadvantage these days, in any context, I smile. I listen. Then I politely disagree.

A matter of life and death

When I was a teenager, my mother, in her infinite wisdom and patience, often needed to remind me that the issue I was tearing my hair out over ‘wasn’t a matter of life and death’. I was –and still am – a sensitive person, and often experience life quite dramatically and intensely. Just talk to any of my closest friends/family and they will agree wholeheartedly (though I hope they will also tell you that it is part of what makes me driven, empathetic and very passionate!).

Sometimes now when I get stressed in my daily work, I wish my mum was sitting beside me rather than back in Australia. I wish she could sigh, give me a hug, and tell me that what I am dealing with is not ‘a matter of life and death’, that there are bigger picture issues that I could be worried about, and that everything will be ok.

The problem is, these days, some of the issues I lose sleep over at night ARE about life and death. Not in some idealistic, save-the-world kind of way.

But a lot of times in situations I am confronted with I honestly don’t know what the right action is – if it exists at all – but I do know that my decision has serious consequences for other’s lives.

I want to tell you a story that I lost a lot of sleep over, late last year. I wanted to share it earlier, but the words and thoughts were jumbled until now (I have a little time at the moment to ponder things…). I couldn’t decipher the message behind the story until now.

My community team (the three of us) were in the village having a meeting. We commented that there were less people than we had expected. A woman casually responded by explaining some members had gone to visit the family of the boy that was ‘about to die’. After gathering more information, we found out the boy was around 10 years of age, he had a heart problem, had recently been to MH where he had improved, was discharged, but after a month had become much worse.

After the meeting, we went to the household of the child. The sun was already dropping below the horizon, casting shadows on the narrow dirt track that led to the remotest area of the village. It was clear on arrival that the family were very poor. In one glance, I took in the dilapidated mud hut, the lack of shoes on the scuffed feet of the family, and the countless number of children looking on with curious faces. I heard the boy before I saw him, the short gasps and long groans of someone on the edge of death –sounds that I’ve become a little more familiar with since working at a clinic in Africa. After introducing ourselves, we found the boy inside the hut, and as my eyes adjusted to the dim light that seeped in through the cracks in the mud, I saw him lying on a faded woven mat spread out on the dirt floor. It was a horrifying sight. A fragile 10 year old body, his eyes squeezed shut in fear, with an abdomen the size of a woman carrying a full term baby.  Something was very wrong.

I called Michael immediately and described what I saw. He told me to bring the child, and explained that if I didn’t the child would probably die that night.

We talked to the parents. The father reluctantly agreed to take the child by motorbike. The mother, however, refused. She wanted to keep him in the hut. She did not want him to leave, to go to a clinic, to spend further money. He had already been to the clinic, after all, and we had not fixed him. She was ready for him to leave this earth, and it took the MH community staff 10 minutes of fast talking Rukiga, and the promise of free transport and treatment, to convince her to allow the boy to come to MH.

By the time we left the village on the bikes it was dark. Once I reached home almost an hour later, Michael went up to the clinic and worked on the boy for a few hours, stabilising him for the night. When Michael arrived home, we talked in bed for a long time about the boy, about his situation, and about the mother who refused medical care for her child. I was angry and confused by the mother’s reaction, and shaken by the experience of seeing a scared young child so close to death with so few around him that were ready to fight for his life.

Arnold then spent 2 weeks on the MH ward with his father, improving as much as he could in his condition; he was in right heart failure and what he needed was an operation – a valve replacement – that cannot be performed in Uganda. We heard that an NGO (Samaritan’s Purse), often arrange and pay for heart operations in India for children like Arnold, but that they only identify those children at Mulago, the national referral hospital in Kampala. Samaritans Purse would be at Mulago the next Tuesday. So we decided it would be a good idea to send Arnold and another little girl diagnosed with a similar (but not as urgent) condition to Mulago.

This is where it became super difficult, and why all of a sudden the self-righteous judgement I had for the mother’s seemingly cruel reaction seemed to fade fatalistically away…

The families had essentially no money with them, and sending them to Mulago would be an expensive task so we asked the district health department to help us. After many promised vehicles, fuel and funds, they were not able to help.  We enquired about the two shiny white ambulances that were given to the district earlier that year by another NGO. We were told that these ambulances were only to be used to transport women with obstetric complications, an incredibly ridiculous condition imposed by American donors, which improves only one small area of the health system.

Eventually (after days of waiting) we decided to use public means, painstakingly arranging every detail so the families wouldn’t fail to reach the hospital. After 7 hours on bus, a friend of a staff member met them at the bus stop in Kampala at 8pm, and took them to Mulago. After this long journey, they found themselves at the cardiology centre, armed with test results and referral letters from MH.  They were greeted by a nurse who explained the doctors had left for the day and therefore they could not be admitted – they would have to leave. After some negotiation with MH staff over the phone (whilst dreading a long night in the rain, sleeping in the carpark of Mulago), they were sent to the casualty ward for possible admission there. The doctor on duty took one look at Arnold (who was looking increasingly sicker from the long journey) and sent him back to the cardiology ward, after a call to the on-call cardiologist demanding he admit them both.

Between the four of them (2 children, 2 guardians) they were given 1 bed. The next day they were told to pay money for a consultation or leave. They used the little money they were given from us, for the consultation. Although they already had test results from MH and it was clear that both were in need of significant help, the treating cardiologist demanded they both pay to have another echocardiogram done. Despite Arnold’s showing a failing heart with a large blood clot in one of the chambers, and the young girls showing a heart in end stage failure, he reported that they were both fine and should be discharged. A script was written for each of them but as they had no money left, they were not given any drugs at this government health facility. This was despite the fact that the young girl who travelled with Arnold had been seen by a visiting cardiologist from the MH Australia Board, Prof Prash Sanders, who found the girl to be in severe heart failure and in need of a valve replacement.

The children were, therefore, discharged before the Samaritan’s Purse workers could even see them, and not knowing what else to do, they found their way onto a bus back to Kamwenge. Upon arrival back in Kamwenge, they came to the MH clinic, grateful for our assistance, but disappointed that their children had not been helped. We treated them with what we could at the clinic, gave more free medication and instructions to return, then sent them home. The parents of the children were astonished at our generosity, and our belief that at some point we could help those children.

In February, on returning to Maranatha, my staff informed me the boy, Arnold, had died in his home.

Some of our staff attended the burial.

 

This story isn’t meant to make you feel sad or helpless.

This is not just a story about a boy dying of heart disease. It is not a story about uncaring parents. It is not a story about the need for funds to offer heart surgery in Uganda. It is not a story about a young white girl with too much idealism.

It is a story about how the poor lack opportunities, lack services, lack choice, lack voice. Not because those services and opportunities don’t exist, but because the poor are again and again denied access to them by virtue of being poor.

Arnold’s story paints perfectly the synergy of fatalism and poverty.

Immediately on hearing the boy had died in his home, in the same state I had found him, I cursed myself for pressuring him to come to the clinic in the first place, so that he would be forced to suffer through the same experience twice.

But I mulled over that thought. It sat very heavy and uncomfortably on my spirit. If I surrender to the deep fatalism of my fellow Kamwengians, how could transformation come?  Jesus came to this earth and offered life to the full despite the suffering he saw around him.

So I promised myself I would not also become fatalistic. Realistic, when necessary, but never fatalistic. No matter how many children I find like Arnold, and no matter how many I fail to help, I always want my first reaction to be one of optimism and a desire for this world to be different.

False quotes and failing health…

In light of all that has happened over the past few months, including the closure of the Maranatha Health clinic due to a factory being illegally put up next to our land, I have been following the Ugandan media with interest this week. Mostly, to track the articles that are being written about Maranatha. (By the way, I wrote this blog over 6 weeks ago but have only got around to posting it now!)

When I first moved to Uganda, I took an overly-keen interest in the newspapers, delving very deeply into the politics of this country.  Like many Ugandans, I became quite wrapped up in the politics of Uganda, the key players, the scandals, the economy, the issues. The average educated Ugandan’s interest in politics is a fascinating phenomenon that I’m still getting used to. After 25 years of my life lived in Australia, where most  young people who have finished high school can barely offer up the names of the PM and deputy, it is still bizarre to me that so many Ugandans know all the key ministers, their families, their business dealings, and scandals. In essence they are the Ugandan version of celebrities.

However, about 1 year in, and after reading about the millionth corruption investigation story, my interest in the media waned, especially since 99.9% of the time nothing was achieved by reporting the story. It made me a little too cynical, reading again and again of men being found ‘not guilty’ for crimes that have appeared to cost the country millions of dollars in tax payer funds. Although I would’ve loved to, I also didn’t feel (and still don’t) that I should share my thoughts publically about such issues considering the sensitive nature of my employment and status in this country. Furthermore, although the media is open, free and can report essentially whatever they want, I feel almost every story is fanatically event-based, rather than drawing Ugandans into a bigger-picture conversation on long term solutions to the issues facing the country.

Last week reminded me again of why I have tried to avoid getting too heavily invested in Ugandan politics and media. Keeping track of the headlines, two things have been highlighted to me:

Much journalism in this country (in my opinion) is amateur and opportunistic*. I was completely ignorant until a few weeks ago that when one needs to have a story written in this country (unless it is a national issue) one must PAY journalists to write it. Yep, you heard me correct. Over and above the wages that journalists receive from the newspaper, to have an investigation and story written about the issue in Kamwenge (or any issue for that matter, so I’ve been informed from Ugandan friends), we were expected to fork out money (per media outlet/journalist) for the mere privilege of their interest. Now let me get this straight. We do not pay them for a one sided account. After you fork out such ridiculous sums of money for mediocre reporting, they write what is purported to be a ‘balanced story’ (while others take your money and write nothing!). So far however, the quality of articles has been at best slightly inaccurate, at worst totally missing the point of the issue. Every single article written so far has described us as being from Austria (it really isn’t that hard to get the donor country correct, these journalists are degree holders for goodness sakes!); has dramatically misquoted or just plain made up ‘quotes’ we are purported to have said; and the one published the other day quoted a man in Kamwenge town – a maize dealer who is OF COURSE going to benefit and side with the factory – claiming that the residents don’t need or want the health centre, and can easily go to Fort Portal (70kms away) for treatment. Might a journalist point out or question the agenda behind his one sided view? Not in Uganda it seems! Moreover, most neglect to highlight or only vaguely mention, (1) the level of corruption and negligence of district officials which surely must have been present to put up a factory next to a health centre, and (2) the extremely poor quality of health services currently being offered in Kamwenge, that has been redeemed dramatically by the services at Maranatha, and do not currently exist elsewhere in the district.

The second thing that was sadly highlighted to me this week as I poured through the newspapers is, in a demonstration of ironic timing, a collection of articles lamenting the state of health and health services in this country. Of particular interest in the past week, I have read that new figures have shown the HIV rate is rising from 7.5 To 7.9% (the figure I suspect is much higher in Kamwenge); Family Planning levels in rural areas are decreasing; that child malnutrition rates are on the rise and now stand nationally at 35% (in Kamwenge they sit at around 60%); and maternal mortality is again on the rise, with the national figure now at 438/100,000 live births. Michael and I observe the practical realities of these stats everyday and they simply confirm what we are seeing in our own district. However, most alarming is the last statistic about maternal mortality rising. See, from my Masters, I have learnt a bit about health systems – their elements, different ways to strengthen them, schools of thought around this and also how to measure their capacity and effectiveness. One of the key ways to assess the efficiency and effectiveness of a health system is through maternal mortality statistics. Why?  Because maternal services rely on so many different aspects of the health system – things like the presence of primary health care services (ANC and delivery), staffing levels, transport mechanisms, referrals, emergency response, availability of drugs and equipment, and availability of tertiary/specialist care. All these services combine to ensure women do not die in pregnancy or labour (and so poetically, in countries like Australia, that maternal mortality barely exists). Basically what I am saying is that health services in Uganda, generally, are decreasing in quality, in turn producing these unfortunate statistical realities.

Which begs the question – why allow a health centre doing such a fantastic job fighting against these statistics, to be forced to shut by putting a factory next door? Why aren’t the district leadership – among others – viewing this as an issue of urgent and significant importance?

And, why oh why, didn’t the journalists of Uganda identify – and point out the link – between the broader problems of health in Uganda they were writing about this week, and the articles written about Maranatha Health, a much needed service subsidizing a broken health system.

Thus endeth my rant.

*As a disclaimer, I’m sure there are many fantastic journalists in Uganda – I may have lucked out! Also, there are many things that combine to make this a problem – including lack of support and good educational opportunities, corruption, and small salaries.

The end of the hibernation…

The hibernation period has officially ended.

Yesterday, I submitted my thesis, the final part of my Masters in International and Community Development.  I am free. No more study for at least a few years, until the temptation of attempting a PhD becomes too much and I succumb.

For those of you who have noticed my absence from the blogging sphere of late, the above mentioned study was the core reason. Turns out moving to Africa,  setting up an NGO, working full time and undertaking a thesis was probably a little (read: a lot) too much and successfully destroyed any semblance of ‘balance’ my life had. Thus the blogging silence.

But now I’m back. I’m finished. And I feel much the wiser from my research experience, if I do say so myself! I have wanted to learn how to research for a while, specifically because it is important if we are doing innovative work (and we find something that works!)  that we can write about it well and share with others.

My thesis is titled The illusion of choice – women’s autonomy in Family planning decisions in Kamwenge. Essentially, I looked at culture and gender norms that influence and severely constrain women’s choice in Family Planning, which call into question current orthodox measurements of Family Planning which are underpinned by a belief that women DO have choice.

My research (not surprisingly) found women at a village level have very little choice. In fact, most of the time choice and decision making does not even factor into the equation. Cultural understandings of reproduction and gender expectations dictate reproductive decisions so pervasively that reproductive decisions are not really ‘made’ – they are seen as natural, as the taken for granted way of doing things. Dowry (bride price), polygamous marriage practices, prestige that comes with having children, normative decision making by men in marriage, involvement of the husbands kin (especially the Mother in law!) in marriage, religion, and the consequences of pro-FP choices amongst other factors lead to a situation where women are often unable to make empowering decisions in their lives around reproduction, even when given the ‘choice’. That’s the simplified version, anyway.

Trying to challenge something that is seen by a culture as ‘natural’ is almost impossible. Can you imagine trying to tell people in Australia that polygamy is an acceptable form of marriage? Or trying to explain that women should never work outside the home?  Or that a woman’s worth is completely tied to the number of children she has? Or that domestic violence is not only acceptable, but necessary? It would be difficult, essentially because in modern-day Australia we believe a marriage is between only 2 people, that women can do most things a man can do, that women are worth much more than the sum total of their children (thank goodness), and that DV is wrong and damaging to those involved.

Challenging the underlying structures and practices that establish these norms is incredibly difficult. What I am learning as we continue in our community development work is that structural and behaviour change is really really hard. It takes generations. It cannot be forced. Any change is met with suspicion. It is often defended and propagated even by those that suffer most from the injustices these structures create.

That is the work MH is trying to attempt at a grassroots level. It is difficult and frustrating and not very glamorous and moves very slowly.

A famous social theorist called Bourdieu named these taken-for-granted truths in a culture as the doxa – the beliefs which govern the social world and become so naturalised that they are beyond discourse and discussion. This thesis, my research of the doxa, and my work in Uganda has got me thinking about my own (Australian) culture. Being away from my countrymen for a bit has made me aware of some of these doxic beliefs that exist back in Oz – especially when I am confronted with obvious and viable alternatives to them each and every day in Uganda.

Now, I could rattle off (my perceptions) of a bunch of them but I thought instead I’d be interested to know what you think they might be  – any ideas?

To laugh or not to laugh, that is the question

One of the greatest things about working in Kamwenge at Maranatha Health is the amount of amusing/humorous things that happen on a daily basis.

And I mean laugh out loud kind of funny, not a half-baked smile and a quaint story to relay later.

Patients, in particularly, provide endless sources of entertainment.

The other day we had a slightly obese woman admitted onto the ward. Because the staff aren’t nearly as politically correct as me, she immediately adopted the charming title: ‘the fat one’.

Which was quickly adjusted to become ‘the fat lazy one’, mainly because she refused to get out of bed (despite the fact she wasn’t that unwell after a few days at MH). I shouldn’t judge. I’m sure she had a hard life, with lots of children to look after, and probably just needed a good rest in a comfy bed.

I walked through the ward one day, to see her stretched out lying on her bed, in what could only be described as a typical sun baking position, her top half completely naked. I wandered over to the nurses desk enquiring about the lack of clothes. The explanation was a shrug, then a giggle.

After 3 days like this, she requested to go home. Michael explained that before she could go home, she would need to show she could get out of bed. Freshen up. Have a bathe. He even suggested (sensitively) that perhaps she could put some clothes on?

After another day and much coercion, the nurses got her out of bed. Then, she kind of went missing. Nobody saw her for about an hour. Michael and I were doing some work in the office, heads down, when Merinah one of the clinical officers came in. She looked at the external glass door of our office with mild amusement and asked ‘who is that’? Outside, on the cement ridge that borders the clinic, just outside the office door, was a lady fast asleep. We all lost it. As we watched she woke lazily, wriggled around to get a comfier position on the cement (??), and stripped down to reveal her breasts once again, oblivious to our laughter.

We gave up, and sent her home that day.

***

Michael and Andrew our administrator (and me to a much smaller extent) have one thing in common – we’re not very good with birds. Especially birds inside. My personal opinion? Birds belong outside…

The other day the three of us were having a management meeting in the office when a bird flew in an open window. Immediately Michael and Andrew hit the floor, as the bird fluttered and flung itself around the room. At first I tried to guide it to the open window, but crazy with fear and desperate to escape, it just kept smashing into the glass. I gave up and tried to flee the room. Eventually, it knocked itself out, although we were all too scared to go near it to check if it was dead. Andrew ordered me to ‘find Ibrah’.

Just for some context, Ibrah is our ‘machine’ – he is probably the strongest, fittest guy I know. MH last year sold him an unneeded (extremely heavy) wooden bed for his place, and he happily carried it all the way to town (about 2 kms), over his head, without flinching. Needless to say, the iddy-biddy bird would be no match for Ibrah.

However, Ibrah was not close by. Instead I found Bosco (our CD worker) walking towards me in the corridor, who quickly saw my half amused/half concerned expression and asked me what’s wrong. I explained and he came to the office. After laughing at our pathetic display, he crept over to the bird.

The bird flinched.

Bosco flinched.

It was a tense moment. He picked it up from its feathery tail (still half unconscious) but it moved and he dropped it in fear. He tried again, this time throwing it towards the door, its limp body no longer moving. Andrew finished the job, by soccering it out the door. We cheered.

The semi-concious bird had almost defeated three grown men and myself (an extremely competent woman!).

Bosco was the reluctant hero.

Compared to the rest of us, he was a bird whisperer.

***

There are plenty of funny moments every day, and anyone who comes to Maranatha will quickly realise we have quite a boisterous, energetic work place and staff, which I love!

However, there are some things we laugh at because there is nothing left to do.

It’s a common Ugandan trait – one I am still getting used to but slowly adopting myself to my surprise – to shake your head and laugh when you see the suffering around you. Not because you don’t have compassion, or because you think it’s hilarious, or because you think poverty should be laughed at.

Not because you don’t care, but because you do. Because if you don’t shake your head and laugh, you cry. And that is not acceptable most of the time – Ugandan culture is a culture of glass-half-full people.

Did you ever remember a time when someone was breaking bad news to a room of people, or your class was getting reprimanded, and you got the giggles? The ridiculousness, the terribleness of the situation caused you to slip out a sound of amusement? It is kind of like that. So many situations here and the grinding poverty and ignorance that creates them, is beyond our immediate control. Constantly you watch the worse possible scenario that could happen, play out in front of you like a terribly painful slapstick comedy routine.

Like the other day, when a young boy admitted was left for a whole day at the ward without his family. When the family finally returned with his ‘food’, the staff described it to me as ‘pig scraps in an unwashed detergent container’.

Or the 10th small child presenting at the clinic with a life-threatening infection due to an archaic ‘surgical’ procedure practiced by traditional healers, because the child had a bit of diarrhoea.

Or the woman you test positive for HIV who refuses ARV treatment because her husband will beat her if he finds out she is getting access to treatment.

So our staff laugh. I used to be indignant.  I used to get defensive of those they were laughing at. Now, sometimes, I try to laugh with them. And pray that God will bring change to this place, when so often I feel utterly powerless to do so.

But sometimes, as a last resort, we cry. The other day, the first child died at the Maranatha Health clinic. A little girl with cerebral malaria. Our staff did everything possible, but she did not make it. It was a very sad day. I wasn’t there when the mother took the body. But Michael was; he told me later that the memory of it will be etched in his mind forever. After preparing the body, the baby was wrapped in some material the mother had. She had no transport and no way of carrying the body – all we could find was a box. So as Michael looked towards the gate, he saw the tired woman slowly make her way down the hill and back towards her village on foot, a cardboard box perched above her head; inside her young daughter ready for burial.

She arrived in a beat up Corolla

The other day a woman from the village was brought to our clinic.

Unconscious

Her body in shock

In the back seat of a beat up Corolla

She came with a few relatives and an educated man from Kamwenge town who was from the same minority tribe, found the woman, and rushed her to us.

The woman had given birth recently, at home, with only a relative to help her. She had come to us for antenatal a few weeks earlier, but had made the decision to stay at home for the birth. She and the baby had not been for a postnatal check-up. When the relatives saw the woman was unwell they delayed taking her to the clinic for days. It might be expensive, after all.

So there she was, her limp form lying in the car.

Then there was a lot of quick, fast discussion in Rukiga and English – between the well dressed educated man, the relatives from the village, our staff, Michael and myself. What should we do?

Could we admit her and try and help?

Do we have anything we need to treat this woman in such severe condition?

Could we find an ambulance to transport her to Fort Portal?

Would she die along the road if we tried to send her somewhere else?

Why hadn’t we already purchase our Oxygen concentrator that we desperately needed?

Did any of the other health facilities in Kamwenge have blood ready for a transfusion?

No.

Less than a week later, we now have an oxygen concentrator. We are almost set up for blood transfusion.

But the woman is already dead, so what use is that to her now, I ask?

Patients or Profits?

Perhaps it has something to do with the lack of, and ineffectiveness of, regulatory bodies. Perhaps the training at many Universities is below par. Perhaps it is due to the everyday Ugandan’s powerlessness and incapability of demanding and knowing their rights. Or perhaps it is the simple truth that money-motivated-medicine around the world always seems to behave badly.  I’m not sure why it is the way it is – I will not presume to give an opinion on a complex issue I know almost nothing about.

What am I talking about?

Poor quality medical services – in this case the private system – in Uganda.*

The public system in many developing countries has a lot to be desired, and a thousand reasons why this is so. But the private system? The system with money and drugs and equipment and trained staff on good salaries?

I wanted to share a simple story of something that happened the other day that left me bewildered. Before I share my experience, let me first say that there are many intelligent, professional, trustworthy doctors in Uganda who practice very good medicine. Unfortunately, they are not by any stretch of the imagination the majority.

Michael and I stayed with our family in Kampala for a few days last week. One night, our brother Pete (who’s a year older than me) staggered through the door complaining of a severe headache that he’d had most of the day. It had come on suddenly. After a heap of questions, Michael was convinced it was a migraine and all the symptoms pointed to this – whatever the case, we decided to take him to the Gensi’s family doctor, a private middle-class clinic a block from our place where he could get some fluids and painkillers. We (Michael, me, and Margaret, our mum) loaded Pete into our car to take him. It was peak hour, and so we sat impatiently waiting in traffic even though the clinic was literally around the corner, as Pete moaned and threatened to vomit in the car. Eventually, Margaret had had enough. She instructed Michael to put on his hazard lights, ordered him to drive on the wrong side of the road, abruptly jumped out of the car and starting stubbornly walking into the oncoming traffic (have I mentioned before that you don’t mess with Bakiga women?) as Michael eased his way past the jam on the wrong side of the road ignoring the glares from passing vehicles. Her display of motherly love was quite astounding, but I didn’t know whether to laugh at the situation or hide from angry faces in the vehicles that Margaret had forced to the side of the road.

Arriving at the clinic, a small building with a consulting room, a lab and a few rooms with beds, we found the doctor reading his newspaper. After getting his attention, he took a very short history from Pete – like 2 questions. Pete was convinced it was a migraine and not malaria; after all he had had malaria dozens of times in his life and knew what it felt like. Clearly though the doctor felt he had gathered the info he needed and had had enough of interacting with his patient, because at that point he wrote some things on a piece of paper, ordered a blood test, and told us to wait. There was no explanation given. Pete, in the meantime, was struggling to stay on his chair due to the pain.

After a few requests from Michael, they led him to a room with a bed in it, and shortly after a nurse came in. They apparently had the results of the blood tests back, although no staff mentioned this. She came loaded with several injections and ordered Pete to remain still as she jabbed him several times. He had no idea what the diagnosis was. No conversation with the doctor. No idea what treatment he was getting. No permission was sought to administer the drugs.

Pete was still dehydrated so Michael requested they get a drip into him. Reluctantly, they agreed. The headache had lasted a long time, so Michael also checked for signs of bleeding on the brain. Something they had also not bothered to do.

In the meantime, we were all curious to know what was happening, and what the diagnosis was. (These patients and their demands, how annoying…) Margaret went to find the doctor, who informed her that Pete had a bacterial infection. No further explanation.

Eventually, we found out what they treated him with. The list is as follows:

  • 1 shot of malaria treatment
  • 1 shot of anti-nausea
  • 2 shots of extremely heavy duty antibiotics
  • 1 shot of an anti-inflammatory (this one was actually for the migraine and very helpful)
  • 1 drip of glucose (used in patients with malaria), not helpful for rehydration

By this stage Michael was a little confused. He was convinced that all Pete had was a migraine, and he needed fluids and rest. So he asked the nurse to show him the lab results.

It turned out that Pete tested negative for malaria and negative for any bacterial infection. His white blood cell count was within the normal range.

After several hours, when he had slept and was feeling better, they discharged him and he came home. However, not without being told he would need to come back for the next three days, to have more anti-malarial and antibiotic injections. Up to this point, they had not mentioned money, but Pete was dreading the cost. From past experience, Pete estimated it would be around 300,000UGX  (A$150) or possibly more. That is big money in Uganda.

Now, I’m not a doctor. I have not been through medical school. But being married to a GP – wait – even visiting a GP on many occasions in Australia would have made me more equipped to deal with this situation than the doctor who saw Pete. Here’s ‘Kim’s General Practice Medicine 1-0-1’.

Lesson 1: Talk to your patient, gather a comprehensive history, think of all possible causes (not just malaria because it’s an easy diagnosis).

Lesson 2: Once you have a diagnosis, communicate this to your patient.

Lesson 3: Make sure your diagnosis is based on facts/lab tests/at least some semblance of science and NOT based on the fact that you can charge more money for medication if its malaria or infection (or both?!), which it clearly was not. If in doubt, run the tests again.

Lesson 4: If you are going to administer drugs, explain the diagnosis and medications to the patient and SEEK his permission to administer them. Again, communication is key! In Australia we call administering drugs without permission ‘assault.’

Lesson 5: Do not treat your patient for diseases he doesn’t have, so that you continue the spiral of malarial and antibiotic resistance that are out of control in places like Uganda where drugs are not regulated well.

Lesson 6: Don’t be a money-hungry incompetent idiot.

Thus endeth my rant for today.

*By the way, I don’t deliberately mean to exclude some of the terrible displays of medicine practiced in Australia – by a wide range of doctors.  Statistics show that the average private surgeon in Australia will operate many more times than necessary if there is a bit of money to be made and some fun to be had – often to the detriment of the patient.

 

Broken bones and faulty machines

Michael, my husband, injured his hand about a month ago, and it was still hurting quite a bit, 4 weeks on. He was concerned that it wasn’t healing, and we wanted to get an x-ray to check that it wasn’t fractured and didn’t need a cast (something we were both dreading!! ).

Of course, there is nowhere to get an x-ray in Kamwenge.

So we begrudgingly piled into the car to set out on our fortnightly trip to Fort Portal, the nearest big town to Kamwenge. Fort Portal is a big town  (maybe 80,000 people? I really have no idea!) about 70 km’s away, and it normally takes about 1 to 1 and a half hours on a windy dirt road, surrounded by beautiful scenery – hills cultivated with maize, millet and matooke banana trees, a section of tropical rainforest with baboons along the way, and then rolling expanses of neatly ordered tea plantations, sprinkled with old houses left over from the colonial era. A beautiful drive.

But now that the wet season has well and truly come, the road is terrible. We crawled along for most of the journey, trying to avoid the gazillion pot holes and deep rivets in the road, all the time shaking our heads at the poor state of the roads. It took us over 2 very bumpy hours to reach Fort Portal for our day trip.

After getting all our other jobs done – recharging the internet modem, going to the bank, printing, getting stuff for MH ticked off the list – we looked around for a place to get an x-ray. First we tried a private clinic in town recommended by someone on the main street. We were told they are a clinic used by one of the main insurance companies in Uganda, and would definitely have an x-ray.

What I found was a small dingy room full of bored patients, with no staff in site. A woman who was waiting pointed towards the next room, where I found what looked like some makeshift outpatient rooms. It was only when I poked my head around the corner into a small store that I found a nurse. When I asked what I needed she was quick to tell me they had no equipment for x-ray here, but told me to try Kabarole Hospital – the Anglican church hospital round the corner.

Arriving at Kabarole, we struggled to find anyone to help us, just crumbling buildings and a freshly painted one labelled ‘private ward’. We approached the dispensary and after getting over his surprise that a white person would be there, the man shook his head as he told us the X-ray machine had been broken for some time. Instead, we should try another private clinic in town.

The next clinic wasn’t much different. Here, they were known for x-rays (it was even written on the sign outside) but unfortunately, the films were over and they didn’t know when they would next come. With a resigned sigh that conveyed almost no confidence, the women told us to try Buhinga.

Buhinga is the main regional referral hospital for this part of western Uganda. It is a government hospital. We have heard many stories of patients coming there to find doctors who will not see them without bribes, a lack of equipment and medications, and overcrowded rooms of very sick patients. Currently, this is where most people in Kamwenge get referred onto.

We were very lucky though. Or perhaps, more accurately, we were white. We found a nurse along the maze of undercover pathways that linked the hospital buildings, and she was friendly and happy to help us. She led us to the x-ray department, where we wove through dozens of patients sitting (or lying down), waiting for their x-ray or ultrasound. The doctor was pleasant and happy to do the x-ray for us immediately (and free), and although Michael’s hand was slightly fractured it was small and almost healed, so there was no need for a cast.

But as we were waiting for the film to develop, there was a little girl in line, needing to have her face x-rayed as she had a severe head injury. It was not possible. They were only stocking the half size x-ray films, which meant there was no way to get a full x-ray of her head. Her father, who looked poor and out of his depth in the situation, listened intensely as they told him he would have to take her somewhere else for an x-ray. I already knew from my experience that day that there were no other places in Fort Portal to get an x-ray and he would not be able to afford the transport to somewhere far.

Michael and I lived in Mannum a few years ago. In the small town of maybe 5000, they had a good x-ray machine. Compare this to Kamwenge, who in the town itself has about 20,000, but services a district of 350,000 people, with no x-ray machine.

It sounds clichéd but again it made me realise how lucky Australian’s are to have the health care system we have. As for me? I am not used to driving 2 hours on a muddy, potholed road just for a simple x-ray. I am not used to driving around to 4 different clinics in one big town just to find a working x-ray machine.

One day I hope and pray that this will be as strange to Ugandans as it is to me.

Bring your blade, bedding and basin…

A good friend of mine who lives in Kamwenge town is pregnant with her second baby. During the birth of her first child, her labour became obstructed. Because there was no place in Kamwenge that could help her, she travelled 1.5 hours on a dirt road, in severe trauma, on public transport to reach the nearest clinic that could operate on her. Her and her beautiful boy survived, although she now has a great fear of childbirth. Every time I see her, she fervently asks for me to pray for the safe arrival of her baby due in August.

But she was fortunate enough to be able to afford the cost of transport to Fort Portal, and was able to get there in time.

In Kamwenge, where the population has reached at least 350,000, there is no district hospital. The two main clinics in the district do not offer Emergency Obstetric Care. There is no working theatre. No running water or electricity. Many of the health staff are hardworking, compassionate individuals who are tired of having so few drugs and equipment.

Being a woman in Africa is tough. And one of the toughest things of all is giving birth. I read lately, in a journal article written by an anthropologist (I can’t remember the name of the article!), that in an area of eastern Uganda, childbirth is sometimes referred to in vanacular as ‘the trap’ because of the risks involved.

The maternal mortality rate in Uganda is 506/100,000 live births. In Kamwenge it is unknown, but expected to be much higher. Every year, 1.5 million African children are left  without a mother because she dies trying to give birth to a brother or sister. The risks in child birth are a struggle faced almost exclusively by poor women, with 99% of maternal mortality in developing countries. It is astounding in this era of medical advancement, that so many women continue losing their lives giving birth, and it is for this reason that Maranatha Health have chosen to focus on improving maternal mortality in Kamwenge.

Despite what I know, every now and then I wonder if what we are doing is worth it – maybe the situation in Uganda’s health care system isn’t ALL that bad.

Then, I read an opinion piece by Frederick Golooba-Mutebi in this weeks East African:

Maternal deaths: Why Ugandans are victims of their own civic incompetence

Recent media reports detailing the tragic deaths of expectant women and their unborn or newly-born babies in referral hospitals and health centres across the country have laid bare the crisis in Uganda’s healthcare system and made a laughing stock of the NRM government and its extravagant but empty claims about being focused on service delivery.

The anger, despair and disgust the many preventable deaths have caused are captured in the decision, reported in this column last week, by activists to take the matter into their hands and drag the Museveni government to court.

Reports from the “grassroots” indicate that in some cases relatives of the victims take matters into their own hands and threaten health personnel with violence. Others, however, behave as if their experience were the natural order of things and simply return home to bury their dead.

Before the decision of activists to enlist the law, only in a few isolated cases had victims of Uganda’s shambolic maternal health services sought to enlist the help of the police or courts of law. Two cases stand out.

One involved the death in early May of one Joyce Nabatanzi at Nakaseke Hospital, allegedly because nurses had been negligent. I have no idea how or where the story ended. However, a senior officer who claimed his staff were hardworking attributed the incident to the hospital having run out of essential drugs and supplies without which lifesaving surgery could not take place. Several phone calls to the National Medical Stores had not led to the desired response. To make matters worse, the hospital did not have an ambulance to transfer the patient.

The other was of a couple who lost a baby at Jinja hospital, also because of alleged negligence by nurses. The bereaved woman spoke for herself: “These people should improve. I heard countless insults from the nurses using obscene language. They handled me like I was a thief, pulling me from all sides.”

Unwilling to accept what had happened, her husband filed a case with the police. Here, as in Nakaseke, the hospital lacked drugs and supplies, as the father pointed out: “I bought everything since the hospital did not have the needed items to facilitate delivery.”

To add insult to injury, he could not get a post-mortem without coughing up more money: “Now someone tells me if I want a post-mortem, I have to give the pathologist transport.” According to a police officer on the scene, this was not the first time incidents of this kind were happening at the hospital.”

With all this in mind, it is difficult not to equate going to give birth at a public health facility in Uganda to going to war. As with combatants in war, here too, there is no way to tell whether one will come out alive.

There is, however, a sense in which combatants going off to war are better-off: They do not buy their own uniforms, guns, bullets, bombs, boots, or even food.

Meanwhile, expectant mothers going into government facilities must carry their own food, gloves, razor blades, sugar, tealeaves, bedding, basins and even saucepans. You have to see it to believe it. You would be forgiven for thinking they are moving house.

It is all too easy to buy into stories of the by now legendary negligence of health workers in Uganda. That is until you learn a thing or two about the conditions many face at work. Consider these statistics, which appeared in a recent newspaper report: Hoima hospital has 97 staff out of the 197 required. It requires 56 nurses but has only 34. It is run by eight doctors out of the required 35.

A brave nurse summed up how things work over there: “There is no other option than doing what we can and leaving what we can’t. What do we do when things are beyond our reach?”