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Community Volunteers
For March’s outreach we head to Mukono, a district 35km to the east of Kampala.
We set up a clinic in the local hospital where patients under Hospice can come for a review.
Here I meet Paul and Sophie. Paul and Sophie are community volunteers who cover the Mukono region. They chat to me about their role. They tell me that their role is to sensitise people in the more rural villages about diseases, particularly cancer. In order to do this they have to get to know people in these areas, and if they hear about somebody who is unwell they’ll visit them to see if they can help them. Some people welcome them, their suggestions and their support around how Hospice might be able to help them. Others, they say, want nothing to do with them.
Paul, a Church leader, has been a volunteer since 2020. He went along to Hospice Africa Uganda’s Kampala site where he received training. There were initially 32 people on his course but it ended up being him alone as they weren’t able to commit. Paul loved the course and says it gave him the courage he needed to go out and support people. Paul continued as the sole community volunteer - and won an award for it - until Sophie joined him in 2022. Sophie heard about being a Community Volunteer through a doctor friend. She’d previously been part of the Village Healthy Team, supporting people with health and medical needs so had experience in public health.
When I ask how many days a week or month they do, they tell me it’s continuous: they are always looking out for and alert to people who may need palliative care support. They tell me the best parts of the role are when they go to a patient and a patient welcomes the support, is able to access the palliative care they require and Paul and Sophie are able to see the positive impact on the patient and the family. Paul describes feeling ‘called to do this work’. Sophie says how interesting she finds the work and how she’s learning so much about health care.
Paul talks about the disappointment felt when you visit a patient, spend hours talking to them, thinking that you’re getting through to them and working out how to support them, organising to meet them at appointments in clinic or hospitals and then the patient doesn’t turn up. The principal reasons for this is around transport: the patient is often to unwell to take a boda boda, or too poor to afford a more comfortable means of getting there. Lack of transport is also a big barrier for Sophie and Paul, the infrastructure and roads are very patchy and they describe having to walk miles and miles on foot because there is no other way of reaching the villages.
Again, stigma around HIV and cancer come up and the poor awareness around palliative care. They talk of the tendency to hide the unwell person due to the shame that this might bring the family. And they spend time telling families that it is love that these people need, not shame, not neglect.
Sophie and Paul, the community volunteers, 'the bridges to the hospice'
Nurses being Great
In order to achieve Hospice Africa's vision of palliative care for all in Africa, it must spread. Uganda was the fourth African country (after Kenya, South Africa and Zimbabwe) to adopt palliative care 30 years ago and Hospice Africa has been training clinicians across the continent and supporting them in the introduction of palliative care to their countries. And that means there are now 37 African countries practicing palliative care.
The main way Hospice Africa achieves this is through their International Programme's team. It's a pretty small team: Nurse Educators Dianah and Sylvie, Dr Eddie, and Monique, Francophone correspondent, with a pretty hefty mission. They run a programme called the Initiators Course. I've been hearing a lot about it, applying to go on it even (online April, May, June), but it only dawned on me yesterday that it's called the initiators programme because it comes with the aim of initiating, or introducing, palliative care to the students' countries. It surreal being sat in this unassuming office with this welcoming little team and realising it is on them that a large part of palliative care in Africa depends.
In the initiators course, I am told that clinicians from these various countries will discuss barriers to the development of palliative care in their countries, be it morphine not being legal, lack of education around palliative care or lack of governmental support. The International Programmes team remain in touch with the alumni from the courses and the alumni may call upon support from the team to help with integrating, establishing or improving pallaitive care in their respective countries.
Then, the team will consider if it is appropriate and and safe to visit one of these countries, either alone or in a pair. There, they will meet and be guided by the stakeholders in palliative care, be it a governmental representative, doctors and nurses who are trying to develop palliative care centres or services, pharmacists with an interest in morphine, or lobbying groups. The team will provide mentorship for these groups.
Hospice Africa Uganda has really got around Africa and the only countries it has not yet engaged with are Angola, Algeria, Libya, Madagascar, South Sudan, Eritrea.
Inevitably, there are many barriers to such a small team being able to work so widely: there are the classics, time and money, but then also issues like conflicts within countries, lack of internet.
As a European this is beyond what I can imagine. It's the equivalent of a team of two British nurse and a doctor going round the whole continent, mentoring people in and fighting for palliative care. I mean, if I go on a course or a study day it will probably influence my practice, I'll tell my colleagues about what I learnt, but to try and influence the whole country? Mamma mia. I comment that this is huge and Dianah acknowledges that it is, but also that it is a job that needs doing. And when you are in the position of expertise, as Dianah et al are, it relieves the feeling of being intimidated by the all the top bods they must liaise with.
I've made it clear that I'm a champion of nurses, and the work this nurse led team who are leading this mammoth task is definitely the sort of things that's going to get me through many night shifts on my return. In fact, all of my experiences here have really been affirming to my nursing self. Dr Anne is such a champion of nurses. I love this about her as well as many other things: her colourful dresses and well chosen earrings, her scouse accent, her wit and self-awareness, passion and concern for every person and animal she meets.
The entire Hospice has been having the joy of her founder's talks over the weeks and during these Dr Anne will become briefly distracted by checking on the well being of all the staff members and enquiring about their work schedules to ensure they're taking enough time off. She tells us about the history of hospice and palliative care, the etymology of words, and lights up when photos of patients she's cared for along the way pop up. Each time she mentions a nurse she interject with 'she's a brilliant nurse' or 'she doing an incredible job leading the team at Mbarara.' Dr Anne knows how to platform and praise.
The most recent talk began with discussing how vital the nurses are to Hospice's vision. Dr Anne describes the nursing team as leaders in palliative care and the ones who will carry it. The structures of healthcare in Uganda make it difficult for doctors to undertake palliative care because they don't have the time that palliative necessitates. Also, there are so few doctors. One doctor to 50,000 patients in some parts of Uganda, so a lot rides on nurses. Dr Anne talks about how difficult it is to replace a nurse if they leave (most likely though they will have been made redundant because of lack of funding) because of their experience and expertise. It's so refreshing to hear someone properly singing the praises of nurses, we don't hear it enough. Dr Anne and Hospice Africa were the first to get nurses prescribing in Africa in 2003 - establishing training courses to enable them to prescribe opioids because chasing a doctor to ask for a prescription was not an option.
Alors, seeing nurses here work with such beauty, kindness and skill, learning about their central position in spreading palliative care over Africa and hearing the wonderful Dr Anne celebrating nursing so much, it means a lot. ALOT. And I am so grateful to witness this. I've long given up on achieving greatness, I don't think that was ever a priority for me, but I'll never tire of witnessing greatness.
From Dr Anne's book: Audacity to Love. A must read for all clinicians and all.....people.
Audacity to Love: MERRIMAN: 9780953488094: Amazon.com: Books
You're all getting one for Christmas.
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