Week 3

Palliative Care Conference and Being With Someone

Florence joined Hannah and me this week as Hospice Africa’s British contingent. Florence is a delight and a doctor, she looks like Jane from Disney’s Tarzan and comes from Barnsley but lives in London. I’m doing my best to drag entice her back to South Yorkshire and specifically Sheffield. I’ll give my best pitch. You know, it’s just so friendly, it’s not in your face like other cities – Manchester, London (sorry Manchester and London, I LOVE how in your face you both are), Sheffield reveals herself to you more slowly, you have to work a bit harder to find the good bits: the independent cafes where you’ll get to know the people, you’ll get to know your neighbours because the communities are less transient, you have to earn it and then you’ll reap the rewards. If all else fails you just say pull trump card it’s near the Peak District, but of course, the least interesting thing about Sheffield is her proximity to the the Peaks. And you know, I think she’s tempted.

It has been super interesting going on visits with Florence and seeing her use her physical assessment skills alongside the hospice nurses. It’s so impressive what can be ascertained with such little equipment and eyes and hands alone. And nose. And it makes me keen to do the advanced assessment course on my return. They show me how to palpate abdomens and explain what they find and the significance.

In the first work or two here I’d been, very appropriately, taking more of an observing approach, making like a sponge and watching these super nurses in action. This week I’m finding myself getting into my nursing groove a bit more. I’ve been taking more of a lead on assessments while Jane flits in and out the clinic room, getting into the swing of making suggestions: hhmm maybe it’s worth titrating the morphine now? A little bit of dexamethasone for appetite, spending time chatting about eating - there is a lot of food chat in these consultations.  Hhmm maybe he’s in urinary retention? Perhaps it’s doing your first catheter anywhere that gets a nurse back into it. And finding my St Luke’s nursing self coming back, emphasising prioritising the person’s comfort in their last days of life, not worrying about any of the other things and just making sure they are without pain, their mouth isn’t getting dry and that they know they’re not alone.

Also, what’s nursing without talking about pressure area care? I’ve spent time discussing pressure area care, helping with repositioning, with care takers and families. The skilled carers that we have in the UK isn’t a role here, it’s down to families to care for the patients and without any prior knowledge or training this is no easy feat. Especially as most beds are low down or mattresses on the floor. I really wish I’d brought slide sheets out.

Florence, Hannah, Monique and I represent Hospice Africa Uganda at Palliative Care Association of Uganda’s (PCAU) national quarterly update. It is estimated that over 56.8 million people remain in need of palliative care each year, and that a disproportionate 78% of these live in low- and middle-income countries. In Uganda, although Uganda is known for being a leader in palliative care and came top of the African countries in a 2021 cross-country comparison of quality of death and dying, it is estimated that only 11% of those in need of palliative care access the service. PCAU aim to increase access to palliative care in Uganda by advocating for, educating about and supporting the integration of palliative care. And they do this through research, policy, auditing use of opioids and increasing the availability thereof, incorporating palliative care into nursing and medical under and post graduate education, and auditing provision of palliative care.

If I behaved Englishly on that first drive back from the airport, at this conference I (we) take it to the next level. For context, it hasn’t been particularly sunny while I’ve been here, and when it has I’ve been working. On the conference day, it is VERY sunny. The four of us sit together in the corner of the marquee that is exposed to the sun, it is too much for Monique so she goes to sit under the canopy while us three Brits abroad sit in full sun, glowing white and pink. We were asked by Ugandans every half hour if we were ok and say ‘yea we’re just soaking up the sun because we don’t get much in the UK but we’re fine thanks!’. As appropriate punishment for been so easily bewitched by the sun I did get a slightly reddened forearm.

It strikes me that this is an exciting time for palliative care in Africa, there appears to be real momentum for it. Dianah, Nelson, Dr Anne and I are conducting a survey where we collect the experiences of health care professionals across Africa about their experiences of advance care planning. The idea is that this paper will be presented at the International Conference of Advance Care Planning in Singapore, which takes place in May. Does this mean a trip to Singapore?! Peut-etre. 

 Dianah confirms that there is indeed a real push for palliative across Africa. Dr Tedros – the first African director-general of the World Health Organisation – is really pushing palliative care. WHO are now putting pressure on governments across Africa to see the integration of palliative care. The African Palliative Care Association (APCA) has been working to identify gaps across the continent in palliative care. Dianah tells me that not all governments welcome this pressure to improve and integrate palliative care, but have little choice in the matter given that it is a mandate from the UN.  

The hospice in Jinja (region of Uganda) present a case study of a man who is 44 years old and diagnosed with Kaposi’s Sarcoma caused by AIDs. The nurse, Joan, discusses the man’s symptoms of physical pain from the sarcoma lesions. Then his spiritual issues: the man’s search for hope, love, reassurance, and acceptance. His wife had left him as was not able to accept what was happening to her husband and couldn’t understand what was happening to him. The man could no longer afford to send his children to school as was unable to work. The nurse describes the man as at rock bottom, destitute and hopeless. He had turned to buying herbal medications and had been identified by a community volunteer who referred him to the hospice. The team at Hospice Jinja helped with his pain relief and with the smell from the wounds.

And then, they were there. Nurse Joan told how they visited him every two weeks, and they showed him that he was loved and that he mattered, that they accepted him and promised to walk this journey with him. Joan describes how six months later the patient started to feel that maybe there is some hope. Maybe I am important. So he accepted to go for chemotherapy. This was free. And the hospice provided transport, and funded supportive medications and food. And things are looking up now. He completed treatment, is well again, found a new spouse and a joie de vivre.

It is this that I love about the palliative care. I feel quite emotional writing about it. The nurses at Hospice vow to be with, italicised with, well and truly with that person. Here people don’t have a lovely family GP who has cared for them since they were a child, or a benevolent oncologist who has spoken with them about every angle of their disease and through all the treatment options, or a specialist nurse who they can call at any time if they think of a question they forgot in their consultation, want some blood results interpreting or have something on their mind. They don’t have the 24 hour triage line at Weston Park which they can ring in with concerns about nausea or diahhroea. There is no constant compassionate presence who will be with and guide them through their illness. Nobody overseeing their case. Just a random CT interpretation from a radiologist who they’ll likely never see again, or a one off with an oncologist who will prescribe the chemo and again, unlikely see them again or assess them in between treatments. But this is what Hospice can be for people. And I see the value of that, I see what it means to people and their families, because they’ve not had anyone to guide or help them or listen to them or love them or back them.

And the more I learn about perceptions of cancer and HIV here in Uganda, the more valuable I realise it is to simply be with somebody and love them, without any judgement. There is a lot of stigma around these diseases. Monique explains to me that if somebody dies before they are expected to, it may be seen that there is witchcraft at play, that a curse has been cast upon the family. This is one of the many barriers to accessing palliative care. When palliative care is seen as just ‘death and dying’ it is seen as entertaining that idea of death, giving oxygen to it, when for so many people the idea of death is unthinkable and unspeakable, the very word cannot enter their house.

Coincidentally, I did some research last year with Sheffield University about advance care planning, interviewing people with myeloma about their experiences and preferences around talking about death. One of the things that kept coming up was the stigma around talking about death, and we wondered if it was a very British thing, a bit Victorian and stiff upper lip. Well it turns out that it's not just the UK that finds it difficult talking about dying. 

The beliefs around cancer are responsible for many deaths. This week I met two women – on the same day no less- who both had breast cancer that had metastasised. Both of them had their tumours diagnosed two or three years ago before they’d spread and likely could have been treated with surgery, and both had been advised by herbalists not to take the operation or treatment. And now here they are receiving palliative care. 

We have been caring for a man with deep leg ulcers. He needs a doppler to work out where there’s a block in his circulation, and then vascular surgery, great nursing care and compression dressings. Here he isn’t able to get the doppler, let alone the surgery and will likely have his legs amputated. And then God only knows what fate awaits him. He has already sold everything he owns to try and support his children through school as he's unable to work, when we go into his house I'm aware that the contents of my bum-bag are probably worth more than everything he own. There is a mattress - barely a mattress, more a mat - in the corner of the room that his wife sleeps on while he stays on the chair, and the only things on the wall are a few school calendars from 2019 onwards.  

A little note on schools:

While Ugandans pay tax, it’s not particularly clear how the taxes are spent. I ask one taxi driver and gives me a knowing ‘only God knows’ and others are less euphemistic. Because it seems the taxes don’t go into schools. There are state schools but these are often without teachers because the teachers don’t get paid. To guarantee any sort of education you must pay, and I was surprised to find that many children go to boarding school. My initial reaction was ‘how bourgeoise!’ until I realised that loads of kids go to boarding schools because their parents are unable to look after them due to the hours they work and the distances they have to travel to work, making it impossible to look after their kids. What’s more, people tend to have big families which makes it super expensive. 

Last up at the conference is Reverend Gideon Byamugisha of the Anglican Church. Reverend Gideon is so warm and gorgeous and breaks into song as he speaks, and everyone in the audience has huge smiles as they listen to him. He does lots of work around the stigmas surrounding cancer and AIDs, and educating people in health behaviours, and he himself has both. Such is the belief around the world that AIDs is for ‘immoral people’ that Reverend Gideon couldn’t believe he could have it. He tells us that he was judged by everyone, including the medical team looking after him. Reverend Gideon suggests we start talking about death at the start of life and emphasises that the place of PCAU should be in decolonising the subject of death. He also shares the story of the shock on the pharmacist’s face when he goes it to buy condoms. ‘You mean Colgate, right?’ because even condoms come with a stigma.

He talks of the barriers to dying well, community and being with one another, and categorises these as individualism and the siloed lives we lead, exacerbated by dependence on phones, privatisation of resources, and dehumanisation of people, referring to people as ‘thieves’ or ‘rebels’ rather than human beings. He tells us to blame people less and listen to them. And ends his talk by saying ‘I am still learning because I am not dead’. I love him!

I’m thinking more and more about Sheffield (she’s never far from my mind), City of Sanctuary, and the growing Eritrean, Ethiopian, Sudanese and Congolese communities we are welcoming, and the responsibility we have as palliative care clinicians to recognise the barriers these communities may face in accessing care.

Honey and Cacao

On Saturday evening I’m in our house and am struck that I’ll never have this time again. I’ve only been here 2 weeks and 2 days but it seems much longer. The best thing about experiencing something for the first time is it’s impossible to compare it to anything and I’m terrible for always comparing things: ‘hhmm I think our holiday was better last year, we had better chemistry and swam in the sea more’. But this trip is so unlike anything I’ve done before that I can just take every moment for what it is. Stand alone. I wonder that if I come back again there will be something or someone that has changed and it won’t be like the glory days because these are the glory days for me right now. It all feels so pure.

I so miss Pete and la Sheff. I found I had a playlist downloaded on my phone and put it on and it was heavy with the Arctic Monkey’s new album, Taylor Swift, Sugababes and Self Esteem, which reminded me of being in my kitchen shouting at OK Google, and now I picture Pete eating in there, alone. As I listen to the Arctic Monkey’s new album I wonder to what extent the lyrics are about Sheffield, and conclude to a large one.

I live with a group of woman at the moment and I suppose we are the core four: Naomy, Karen, Janine and me. We had Tomaso last week, an Italian but he left and in his place is Alessandra, a new Italian. People come and go a slot easily into the existing dynamic. One of the many questions I emailed Claire with before coming out was asking for the ages of all the people who were staying in Makindye house, for fear of being the old bird with a bunch of 18 year olds. I’m of course far too preoccupied with age and what one should or shouldn’t be doing at 34, and it’s daft. And here we are, five woman, all well over 30 living happily together, chatting about our days and our hair, and eating Janine’s cinnamon bread every day.

On the morning before Tomaso’s last, we have breakfast on the patio. He has a cacao and halves it for the two of us. This cacao does not taste like chocolate, it’s bitter. He asks if I have anything to make it sweeter, I do. Honey. I have a whole vat of honey from the DRC given to me by Monique, made by her sister. Monique is a friend from Hospice, like the honey she is also from the DRC and works on the francophone course, helping with the teaching, marking to ensure that the content of the programme is French. 

Monique and I spend time together talking Franglais and Frenglish, Monique trying to improve her English and me my French. Monique tells me about the tribe she is from and how it spans Sudan, the DRC and Uganda and long predates the separation of Africa into countries. We discuss our respective governments, le nepotisme, feeling guilty all the time and how to make honey. I think if only I could do my final year French oral exam now – I’d have loads of opinions and hot takes – too many - but back when I was 22 I didn’t have any and in the weekend before the exam, my course mates and I would get together develop hasty ‘opinions’ about things like, what part the UK should play in the Iraq war, and the Arab Spring. I’d usually panic and fall back on my favourite ‘we are all members of one body’ from Inspector Calls. Anyway, je digress. 

So yes, Tomaso, I do have something sweet. Tomaso – he says we can call him Tomi and I’m like why would  I do that when I can call you Tomaso? - is retired and is spending an indefinite period trotting around Africa and Asia and he gives me everything I want from an Italian – mamma mia’s, si’s instead of yesses, ‘aloras’ and ‘eh’s at the end of consonants. Also he says ‘I can see that’ when I tell him about my Italian 16th. 

‘You’re Italian? Oh me too!’ 

 I tell him that we have lots of Italians from Sicily and Naples in il Sheffita and about my effort to rebrand Abbeydale Road as the Italian Quarter.

As we eat the sweetened cacao I feel so happy in this new little world around me and all the worlds that this particular breakfast represents.