Hospice Africa Uganda is a not for profit charity. We were founded in 1993 and established in Uganda by Dr Anne Merriman who came with a vision of palliative care reaching all who need it in Africa. This is a very big vision considering the millions of people who are suffering and need palliative care in Africa. We started off in 1993 with three objectives - one is to provide an impeccable clinical service to patients in Uganda as a model that could be adapted and shared with other African countries, initially founded for cancer but at the time that we started off in Uganda as the fourth hospice in Africa the HIV/AIDS pandemic was really at its height with one in three people having HIV and really facing certain death. So we provided pain and symptom control, counselling, psychosocial and spiritual care to those patients from 1993 in Kampala and then in 1998 we opened up two branches, one in Mbarara and then later in the year, in July, in Hoima.
We have also been doing education; education started with the first patients that we started seeing and their families but formal training of medical students started in 1994. From then we have been teaching health and non-health professionals. Right now we have an institution of higher learning that’s accredited by the Ugandan National Council for Education and we offer degrees and diplomas and next year we are launching the Masters of Science in palliative care. So we have trained over 10,000 people but in addition to that what we have tried to do is create a model of service provision that provides African palliative care that carefully considers the uniqueness of the African environment with resource limitation with the understanding that there are so few doctors. In Uganda it’s one doctor for 20,000 patients and the same story is replicated in many African countries, having a nurse-based service, a nurse-led service, a nurse-led interdisciplinary team.
Then we have done the research that actually shows that, one, most patients are actually not in the hospitals, despite all the overcrowding that you see in the hospitals in Africa and in Uganda, patients are actually in the community. So we have a very carefully crafted home-based care programme that utilises the strength and the benefit of having a family, often extended, with the patient in the community. So we do home-based care programmes and we carefully think through what kind of medications we have within our different settings. Each country that we go to has a list of medications which they call the Essential Drugs List and from that Essential Drugs List we have marked out the key medications to control pain and all the symptoms. So we have thought through this very carefully and we take this model of service provision and advocate for its adaptation in several African countries.
Do the people you train head back to other African countries and show what they’ve learnt?
Yes. The truth is there are millions of patients needing palliative care in Africa, at the same time there are too few doctors. Palliative care really is a specialty and it’s a vocation, it’s a calling and people need to be trained in how they approach patients who are suffering in their bodies but also who have distress in their minds and in their spirits. So there’s a need for training and the only way we can ever get palliative care to spread across the whole of Africa is through education and training.
What we do is we have a model of service provision which intricately intertwines clinical services, the bedside teaching, together with the in class teaching, distance learning, and those students are able to see what we do in the homes when patients are admitted in the hospitals. Then we also teach them to be trainers and leaders and that is the way we are able to transfer our knowledge and replicate ourselves so that we can actually reach the patients who are scattered all over the continent.
Where does funding come from for this?
Funding for healthcare, healthcare is generally expensive. In addition to that, palliative care is a competing priority with other priorities in Africa – paediatric childhood diseases, maternal health, immunisable diseases, infections, are all competing for the same pot of money as palliative care. So palliative care is not looked at as a priority in many African countries. We hardly have any funding, most of the funding that has come for Hospice Africa Uganda has come from donors and well-wishers over the years. That has created quite a lot of problems because there is a disparity between the number of patients who are there and are needing care and cannot pay for the service with the amount of resources that we have. Of course there has been a worldwide recession with the donors so we are really, really struggling. In the last four years our budget has dropped from 7.5 billion Ugandan shillings to just over 4 billion shillings, which is about £1 million UK pounds. But even with that we have a budget gap and so we are really struggling and we are appealing to whoever can support us to come to our rescue.
Anything else important to add?
The other important thing that we need to note about the work that we do is it’s impossible to talk about palliative care and pain relief without talking about opioids. In cancer pain is almost an inevitable thing for many patients, especially as they have more advanced disease and large tumours. So one of the things that we have done as Hospice Africa Uganda is to make oral liquid morphine. Dr Anne Merriman came from Singapore with a simple formula for making morphine from powder and reconstituting it into a liquid which is then bottled. That simple formula is able to control pain for upwards of 95% of our patients.
Now, it is very inexpensive to produce this medication. Oral liquid morphine has been a game-changer for palliative care in Africa. In the past when Hospice Africa Uganda had just started we were mixing it in a bucket over a kitchen sink and the cost was very low, the cost of a loaf of bread, less than a dollar. But from 2011 we entered a private-public partnership with the Ministry of Health and through that partnership we have escalated the production of morphine. We do it in different circumstances now because we have got to do it for the entire country. The agenda is to have the medication be available for all patients who need it in Uganda. The cost has somewhat gone up, initially to $2.50 for a bottle, which is enough pain medication for an adult for about ten days, and it has come down to $2 for a bottle. We have been able to show that inexpensive pain relief is possible in very resource limited settings and we have been able to go to different African countries, share with them what we are doing, and many countries now have oral liquid morphine. Of the 35 countries we have been to which now say they have palliative care 20 of them have orally available morphine. So that’s a great achievement.
As you know, 17% of the world’s population is consuming over 90% of the world’s morphine so there is this very huge disparity with the consumption of morphine which actually mirrors the provision of palliative care services in the countries. So for us that is a huge project, it’s a huge investment that we have made and it is something that we are advocating for, for small services with a few hundred patients and they can do it in a small room to countries that would like to produce this on a large scale for all their citizens.