Week 2 

 More about Hospice Africa Uganda

Today’s morning prayer is extra great: drums, dancing and tambourines and a really upbeat song. With the drums I find the music sounds a bit Simon and Garfunkel. The morning prayer also takes place under a frangipani tree which has chunky branches and leaves and looks like it has been drawn. The whole hospice premise is full of trees, quelle joie to work amongst the palm trees. 

This is my first proper day.

Roselight, the nurse team leader, gives me the low down on the clinical service.

There are 4 parts to it:

1.     Home visits

2.     Day care

3.     Outreach

4.     Outpatients

And nurses: Roselight, Jane, Harriet, Resty and Josephine. These five nurses, veritable grand dames of palliative care, make up the clinical team. We also have Dorkus, the social worker, who has a big role around sourcing funding for patients and supporting Give A Chance charity and day care. There are doctors in more operational or research positions who can be called upon for advice, though generally it is the nurses who deliver the clinical services, making it a nurse led approach. 

The Hospice Africa team, though founded by the Anglo-Irish Dr Anne, is run by Ugandans. The mantra around this is 'African solutions for African problems', and that was Dr Anne's intention from the off. 

Dr Eddie gives a story to illustrate the value of this:

there was an NGO who wanted to make water access easier, so came and built a well. The NGO couldn't understand why the women were bypassing the well each day with the jerry cans and continuing on to their original water source, miles away. When asked why they didn't use the well it turned out that getting out their houses, walking together and spending time together made up the bulk of their social life. A European or North American approach will not understand the nuances of the many many many African cultures. 

Home Visits

Home visits make up the bulk of the clinical work. Two nurses will generally go out separately with a drive and sometimes a social worker. I am told that it would always have been at least one nurse, a social worker and a pharmacist who would have gone out, but there are fewer employees now. I ask one of the drivers what he does while waiting for the nurses and he tells me that sometimes he would go in and help the nurse inside, maybe with cooking or patient care or checking medications. 

Home visits can be within a 20km radius, which although does not sound that far, given the infrastructure of Kampala and its often poor road surfaces, this distance can take at least a couple of hours each way. This was certainly the case on my first home visit. I thought at first it seemed quite luxurious having a driver, when I think of our community team all the nurses drive themselves. However, the driving is often very off road and requires another level of skill.

The first visit is where the clerking takes place. The nurses spend around 90 mins to two hours with the patients. Referrals are made with often little information, this may be by a family member or community volunteer or religious body. The nurses may be told that the patient has cancer, or HIV, or pain but not always much more than that. The teams don’t receive medical notes or have access to systems which will give them scan and blood results. Instead, the nurses work as detectives, taking long detailed oral histories from the patient and their families or care takers while being presented with cobbled together bits of paper (discharge summaries, summaries of tests taken but without the test results, an old microbiology report etc.) from clinical appointments over the years, while trying to piece together the story. They discuss at lengths social history and community. This is particularly important as without social support, it is family and community who support the patient.

The nurse performs a physical examination: blood pressure, pulse, temperature (standard obs), abdominal examination, respiratory assessment, breast and lymph node examination, and without easy access to blood tests, they will assess for anaemia through looking at the pallor of mucous membranes (around the eye, the tongue, palms of hands and soles of feet) and capillary refill.

Money

Finances are discussed. While Hospice Africa delivers free care, morphine and very often, food, most things in the Ugandan health service have to be funded by the patient: clinic appointments, all investigations, scans, blood tests, medications. We see a patient who has quite dangerously high blood pressure and cannot afford their anti-hypertensive medication. They can no longer work because of their illness and have sold all their belongings to pay for treatment and to try and pay for their children’s schooling. I’m beginning to grasp what Dr Anne was talking about when she spoke about the tensions between money and care. We see patients that would be able to get their care freely and easily in the UK who here have to try and source funding from the Church or from various comfort funds or charitable bodies. I’ve never felt more grateful for the NHS.

Roselight emphasises financial awareness in her prescribing. Before prescribing anything she must consider the cost and if the patient will be able to carry on paying for it and be able to continue taking in long term. In neuropathic pain, amitriptyline is favoured over pregabalin and gabapentin as it's cheaper. Also, liquid from the frangipani tree can be used for nerve pain as it cause paralysis of the nerve endings. I am told that while this is effective, it is very messy.

Pain Management

Nerve pain is something the HA team see regularly in cancer patients and also in patients with HIV as the virus causes damage to nerves. Cruelly, the treatment for HIV, anti-retro viral (ARVs) – also can worsen peripheral nerve pain, thus requiring regular ARV reviews, which, again, cost money.  

Oral morphine is also prescribed for nerve pain, and in one patient we visited, I saw how effective it was. When we arrived at her house the patient was crying in pain, waiting for us with her head out the front door. She couldn’t move off the floor, after 5mg of oral morphine, we saw her pain started to relieve and she was settled enough to be able to talk to us and by the end of the visit could sit up.

Other great hacks that Roselight shares are: 

Metronidazole and its many uses. Metronidazole is an antibiotic which works on anaerobic infections: stopping the growth of certain bacteria and parasites. 

Those with sore, infected mouths require mouth wash. The one you can buy is 30,000 shillings (approx. £7) which would be a lot in the UK and even more here. The HA team however make one on site which can be given for free. They use IV metronidazole, water and juice to make it taste and smell better. 

Metronidazole pessaries are indicated for fungating cervical tumours, but are expensive. So at HA, uncoated oral metronidazole, which is much cheaper, is used as a pessary to good effect.

Crushed oral metronidazole is also used on wounds too. We visited a patient with extensive fungating leg ulcers. Nurse Jane explained that initially the odour had been such that it was difficult to be in the same room but having applied the metronidazole the smell had all but gone.

 The Outreach Service and Palliative Care Education

Outreach visits happen monthly and see the nurses packing a bigger bag and waking up early for a loooong day. They leave the usual 20km radius and visit one of Kampala’s four so-called slums. Roselight tells me these visits used to be weekly but reduced has affected this.

HAU recognised that people in these slums were not accessing HAU’s services and there was no real means of referrals or raising awareness to increase access to palliative care. There are many barriers to accessing palliative care. The purposes of the nurses’ outreach visits are:

1.     to see people who might be in need

2.     to develop an overview of the community’s needs

3.     to work with the local government to recruit community volunteers

4.     to train community volunteers who are….

…. respected members of the community who advocate palliative care in the community and help to destigmatise death and dying, thereby increasing the willingness of communities to use palliative care services. They ought to be able to read and write and can be trained in some basic skills: wound dressing, help with meds, to be a point of call, to accompany people on appointments. They will help patients budget for food, medications and investigations. This part of the service is funded by Hospice Africa UK.

Roselight tells me about other services that many people here (and across Uganda) access, but which can sometimes become a barrier to accessing palliative care and may exploit people financially. There are spiritual workers who may prescribe faith in God and faith in God alone. Herbalists who warn against evidence-based medicine in favour of herbs. And private clinicians who, for example, might prescribe and deliver chemotherapy (at a cost) to patients for whom there is no likely benefit. 

We met a patient who had been advised by a herbalist that she must not eat in order to starve her tumour, when really she was only starving herself. After a long discussion debunking this information, she seemed to accept the importance of eating. Jane tells me this situation is not unique and many patients stop eating or are prohibited from eating by their families for this reason. The nurses tell stories of patients having to eat in secret or that it is in day care where they are able to get their only bulky meal. If anybody knows a dietician who might be able to support the team here in preparing an evidence based resource about the importance of eating when you have cancer please get in touch! 

Roselight describes the need for ‘sensitisation to palliative care’. Sensitisation is essentially education. Education about treatment options, about what is happening to somebody physically, and about health behaviours. The physical element of this focuses on what the disease is and what it’s doing, and how it can be treated. HAU provides gloves, bandages, pads.

The psychosocial elements focus on challenging stigmas and myths around: cancer, HIV, contagion, prevention ie protected sex, palliative care and euthanasia, morphine and addiction. Such is the stigma of palliative care that Roselight tells me some people see the HAU cars and think the team have come to kill a patient and sometimes people won’t allow the cars to pass through their compounds.

The psychosocial also focuses on facilitating communities of care which see people sharing food, milk, and support with one another.

Outpatient Service

It is a different approach to an outpatient service that we might see in the UK, it is one which work on more of an ad hoc, drop in approach. This is because constraints around travel, either funding it and or finding it mean it is not possible for people to commit to specific times and dates.

The fourth service is in day care

This is for children and adults. It used to be weekly but is now monthly due to funds. I’m aware that I keep mentioning cuts but it is important that I highlight the work HA do with a tight budget. Patients come to the hospice for the day for a bit of socialising, for a catch up with the nurses and social workers and to discuss any problems, and to give the care givers a rest. A spiritual leader from a different religion, eg Islam, Catholicism, Anglican, but the focus will be more generally on spirituality rather than a specific religion. 

The HA teams, spiritual leaders and patients all have breakfast and lunch together and in between there is singing, story telling, socialising. Patients make their own way to the hospice if possible, otherwise will be collected by the drivers. Siraje and Robert start working at 5am to collect patients from far and wide. Roselight lights up as she tells me how much the patients love this day: ‘it is the BEST day in their care!’, ‘they say the food is like Serena!’ (Serena is a 5 star hotel). She describes the pressure to give everyone a good meal knowing it might be their only chance to eat something decent.

I speak to patients at day care and they tell me what they love about coming, and essentially it boils down to their being able to see their friends and eat well. 

HAU Nurses, Holistic care and Total Pain 

Roselight describes the HAU approach to palliative care: she says that the nurses are trained in prescribing and advanced assessment to facilitate their autonomy is diagnosing and making treatment plans. They must be able to think out of the box and be passionate. They are often called upon for the specialist advice by hospital palliative care teams and GPs. Every nurse I speak to stresses the holistic approach. They stress this to the patients too when describing their role: this is physical, psychological, social and spiritual approach. 

Together these elements are what make up ‘total pain’ the term coined by Dame Cisely Saunder (founder of modern hospice and incidentally one of Dr Anne’s contemporaries) which means that you cannot deliver good palliative care by picking and choosing which of these elements to focus on: what is the value in treating physical pain alone without considering if somebody has enough money for their next meal? Inversely, what is the value of ensuring someone has a week’s worth of food alone if they are in too much pain to stand up to cook it?

The nurses stress too that they will be with the patients throughout. I see how patients value this. They speak of how they feel loved by Hospice and know that the team at hospice are with them. It may be that patients don’t have many and any body else. We meet a young woman, she is 18 years old, and when she developed a sarcoma her family abandoned her and she now lives at the Church. 

Dianah tells me about abandonment due to disease. Sometimes it might be due to the stigma linked to cancer, sometimes in might be the financial burden of looking after someone who is unable to earn or support themselves, and also the time is takes to care. You can see how this may happen when people are just just just about making enough to get through the day. There is no safety net, people are unable to step off the treadmill for a moment. Dianah also explains that in some traditional Ugandan cultures, people cannot touch their in-laws, ie a woman cannot shake hands with her father in-law, a man with his mother in-law, for fear of ‘buko’ aka in-laws disease, which in the UK we'd call Parkinson’s. This means that should a parent become unwell, the immediate family are not able to take care of them and it is the family once removed who would have that role.

In Praise of Bum Bags

The bum bag, however, is a real game changer. I bought it from some women who make bum bags, tote bags, ruck sacks, bags that turn into chairs – all from the garage next door to us. I bought it alongside Randi et al. and enjoyed earnestly calling it a fanny pack when discussing it with them. The bum bag is liberating. Before, I was carrying an over the shoulder mini leather satchel type thing – without a single zip. I mean can you imagine? The contents falling out every time I’d open it. Being so inhibited by having to bend an arm to hold the bag onto my shoulder. Making me physically so …. so closed up. 

And now? I’ve got six (six!) zipped pockets, including a secret one that is any of these apparent boda boda bag snatchers got hold of it they wouldn’t be able to get to the good stuff. Of course I’d never actually put anything in there because if anyone was so poor that they needed to take it I’d want them to get full use of it and its contents. Nevertheless, the multiple pockets mean that when I pull my lipstick out, 50,000 shillings don’t confetti to the floor. And the bum bag is just there, keeping my belly warm, and not taking half the effort of a back pack always swinging it around. I start to recognise the people I pass on my commute, the cow herder, the aerobics class, Rose who is late for school as I am late for work. With my bum bag securely around my waist, I can stroll down the hill, free and open, arms swinging and ready to greet everyone walking by. 

I can’t saying anything won’t happen of course, in Sheffield it’s the same, and perhaps the more ‘Good morning Belle!’ (you know, ‘there goes the baker with his tray like always…’) I become, the more I deserve to fall down a man hole, but it’s nice to have found my feet a bit more and I've only seen lovely things and met lovely people.

In fact, the only time I got scared again was on Friday evening: I’d just picked up a round of Rolex for myself and my housemates. Rolex are chapatis with fried eggs and tomatoes in and I think I’m becoming an addict. Going to get these Rolex felt particularly integral to my transition into Ugandan life as it was reminiscent of going to pick up a round of Shawarmas (not least because they are beige and rolled). I digress, that wasn’t scary that was nice. 

On my return, Naomy, Karen, Lizzie, Janine and I (the Americans left and we are the current house mates) chat on the sofa all evening. Karen is a gifted raconteur (raconteuse?) and actually from Kampala so knows a lot and we are huddled round - like gals at a sleepover sharing ghost stories - as Karen tells us …. Certain types of stories…. stories that make you . … paranoid …… that …. somebody or something is listening and wouldn’t like what you’re saying. I can’t say what yet in case they are reading this too. I search the room for cameras and we make each other jump when the door bells rings, a phone lights up and a huge cockroach patters across the floor.  

Naomy, one of the housemates, is from Nairobi and I feel instantly connected to her because we are both born in 1989. Anybody who knows how it is to be 33 or 34 is an immediate friend. Like we’re running out, a species under threat. She works in marketing for a university here in Kampala. Naomy tells me how fast paced and digital Nairobi is becoming in comparison to Uganda, people are richer and more stressed. She feels Uganda is more paperwork based and relaxed, she says it feels like a party every night. These inter-continental observations are very interesting and help me in my quest to piece Uganda together just a little.

We also bond over a confession that we are not home sick and consider why and agree that when there is so much to think about here everyday it’s like our other worlds don’t exist. It is Sheffield that seems a bit abstract now, in the way Uganda did and I’ve forgotten how it feels to be cold to my bones. Maybe it’s a self preservation thing. I only miss home when I think about home so find it’s best not to.

With my newfound sense of freedom I have also joined the aerobics club at the top of my road. I’d been walking past everyday wanting to be part of that world and when I saw them grapevining to Kylie’s Can’t Get You Out of My Head I had to join. Me and my bumbag went along on Saturday and I felt such joy at one moment where we were all leaning forward, with arms wide and pushed slightly back down a quick steps which I think made us look like tap dancers in chorus line. 

Afterwards we shared tea so sweet it tasted like warm coke and it dawned on me that I would finally be able to describe warm coke should anybody want to know. And we ate banana pancakes. I returned the next day and we did a grim move whereby you lay on your back with your feet up at a right angle and you gradually bring your legs down, still straight, slowly. I had no chance of doing it but instead of letting me just lay there in the morning sun one of the trainers insisted on helping me and the poor guy supported my grey feet and even then I couldn’t manage it thus confirming that I’m a rag doll. 

Let's Go UG Let's Go!

Later that day my housemate Karen takes me and my bumbag to watch basketball at the MTN arena. The basketball court and surrounding benches look like they're from an American high school, basically High School Musical. Karen is a long time fan of basketball, I wasn't - I've always thought players look cool when they leisurely bounce the ball - but I am now! We watched two games: Egypt vs Kenya and Uganda vs Rwanda. Oh my quel spectacle. The players were a delight to behold -  rapid, ruthless, reckless, so tactical, so elegant, and so tall! But then when a player missed a shot the other gals would give her a pat on the shoulder and each other and it was so sweet and tender. Karen was able to explain the significance of the drawing score between Uganda and Rwanda game for pretty much the entire second half, introduce me to the term 'helicopter' to describe Uganda's number 10 as she careered from one end of the court to the other before scoring. 

I'm often nervous about crowds in that I fear they aren't going to give the performers what they deserve, which is standing ovations, appreciation and noise regardless of whether it was good or not - somebody just tried really hard! And I am even more fearful after I got tapped on the shoulder once in the Crucible to sit down when I did just that.  No need to worry here though, the crowd were as glorious as the game itself- busses of school kids had come along and made instruments of plastic bottles and did not stop dancing and singing. 

Bumping into People

I don't know if anything makes you feel like you live somewhere than when you bump into someone you know somewhere you don't expect. Hannah and I go into Kampala and from our matatu we see Josephine, one of the nurses, in this taxi park, packed with what feels like hundreds of vehicles and thousands of people. On the photo at the top of this page you're gifted with perspective and clarity, but when you are in it you are in it. To see somebody you know amongst all this feels quite special. We shout 'JOSEPHINE!' but can't run after her as we’re in a taxi at this point. In the interest of plot she would have heard us come back and we’d have shared an embrace or a well what are the chances?!’ but she didn’t hear us and we lost her in the crowd, but loved telling her on Monday. 

Describing Kampala

Hannah and I took a matatu to the city centre on Friday. A matatu is a public bus that runs in continuous loops and does not have specific stops and times.

I’d not been to the city centre properly yet as had been working and living in the Makindye suburb, which although is certainly not suburban, is not the city centre.

As we walk around the city Hannah and I discuss how we would describe it, waiting to be able to say ‘that’s exactly it!’ Because so far I am stumped. When I speak to people I just say it’s very different to Sheffield, very different. Hannah and I bounce ideas back and forth: ‘intense’, ‘overwhelming’, ‘everything turned up’, ‘takes all your senses’. Essentially, words akin to ‘it’s A LOT’.

On further reflection, I would use the word ‘close’ - the adjective not the verb.

Everything is close. The fumes from cars and vans and matatus feel close.

The heat feels close. It’s sticky, and it gets in your head and is without breeze.

The mosquito which shared my bed last night got far too close, and the gecko that just came in my bedroom is definitely too close (Janine tells me it’s fine, it will eat mosquitoes but it may bark).

The houses sit close together.

The shops sit close together.

The smell of fried chicken feels close, and the chickens in pens before they are fried are close.

Cars and boda bodas drive closely together, packed on to the road. And you find yourself thinking ‘jeez luiz that was close’ each time somebody walks out into the street.

The ditch that runs along side the roads feel close, especially when we swerve to avoid anything oncoming.

Our heads are close to the roof of the land rover as we bounce around through pot holes between visits.

And then the forests are close! Densely packed with lush trees and plants. 

Every bit of space that doesn't have a building on it - or even the bits that do have buildings on - is rich with green. Because things really grow here - lots of rain and lots of sun. 

The people are close. In different ways. Firstly, I realise one of the main differences between Kampala and Uganda and the UK is because the whole entire population are essentially outside. Everyone is outside so everywhere you go is busy. I guess in the UK because of our weather and social structures we are probably more a bit based in doors. Nurse Jane tells me this is because everybody is out trying to make money, trying to earn a living. This may be from setting up a stall selling fruit, a charcoal oven to sell food from, or collecting plastic bottles in massive plastic sacks to sell to recycling.  

The people are in close physical proximity, but also is close knit proximity. We visit a patient who tells of how her community is her support, as she has no family to support her. Janine tells me that people here invest in their communities – as opposed to ISAs, properties, stocks and shares - knowing if you need them they’ll help you.

Dianah shares the Ubuntu philosophy with me: Ubuntu means 'humanity to others' and is seen in sharing, being and working together. Dianah tells me that in Ugandan, and African culture generally, people do not see their possessions as their own. It's a very different perspective when you see the things that you have, as of others too. Dianah gives the example of weddings: you may invite 100 people to a wedding, but now that 200 people will turn up when they catch wind that there's a party happening and that there will be food. She gives another example of a friend who has a visitor come every Sunday, it may sometimes be inconvenient to host this visitor but they are viewed as a family member and treated in this way. I comment that this is a wonderful philosophy and that I hope it doesn't change, Dianah says it is still strong in the villages but a more Capitalist culture is penetrating the cities and towns which threatens to change the way people view their neighbours.  

I’ll keep on trying to find the words to describe Kampala.

If it's not clear how I feel about Kampala, I love love LOVE LOVE it here.