Hospice Uganda is the model hospice for Hospice Africa – an NGO founded in 1993 to promote hospice developments in the countries of Africa which lack palliative medicine. Objectives are:

• To provide a palliative care service to patients and families within a 20km radius of the Makindye premises and to promote this care throughout Uganda
  
• To carry out education programmes in palliative medicine to health professionals at undergraduate and postgraduate levels
  
• To encourage the initiation/consolidation of palliative care in other African countries by providing a training facility at Hospice Uganda

Hospice Uganda (HAU) opened on 23 September 1993 based in a two-bedroom house loaned by Nsambya Hospital. At this time, funds were only available for the following three months, although a 10-year old land rover had been donated by the British High Commission. Hospice headquarters subsequently moved to alternative accommodation, donated free of charge by Henry Mary Kateregga, before securing the current premises at Makindye with the help of the organisation Ireland AID⁴⁵ in 1994.

In January 1998, the service was extended with the founding of Mobile Hospice Mbarara. An outreach clinic was established and supplemented by the inception of roadside clinics for those outside of the 20 kilometre catchment area. In June 1998, a third service was founded - Little Hospice Hoima – to demonstrate how a simple service could be introduced using existing health facilities and personnel. As a result, an affordable service reached out to the villages, supported by community volunteers who helped to identify those in need.⁴⁶

The key person behind HAU was Anne Merriman, a doctor from Liverpool who had previously worked in Singapore and Kenya. She recalls below how she came to work in Uganda:

Dame Cicely had written to me [in 1991] and in October she had edited a book; have you ever seen that journal Contact – published by the Christian Council of Churches, Geneva. Well they had a volume dedicated to palliative care and she asked me to write an article about what we were doing in Nairobi, which I did; and it went out free to most of the developing countries, and I started to get letters from different parts of Africa begging me to do what we were doing in Nairobi in their countries, and I realised there was this big need.

So what I wanted to do was to set up a hospice somewhere that would be a model from which other countries could say, ‘Look it works in our situation,’ because Africans went to Europe, they went to America, and they came back [saying] ‘Oh it’s not affordable: it’s wonderful but we’ll never be able to afford that.’ So I wanted to do was set up a model that was affordable and to show them that it could work in the African situation. So I went home and I worked at home for a year. And during that time we approached people about writing a constitution and my friends came together to form the Board of Hospice Africa, and that was registered in August 1993 as a charity. And meanwhile in January ’93, we started doing a feasibility study and we visited Zimbabwe then we went to Nigeria and we did Uganda; and we really felt Uganda was the best place. And the reason was, one, that the Government was trusted and we would be able to get funding from outside. Secondly, they had a huge AIDS epidemic, you could see the people suffering even driving along the road, it was so big at that stage, you know, it’s gone right down now but it was very big then. And also the Ministry of Health were really fully behind us and promised to get in the morphine: I said I wouldn’t come in without morphine again and they promised to get it in, and they did, but it was a big struggle.

But we got it in and I made a lot of enemies trying to get it in because, although the Minister was behind me, people like the pharmacists were very against what I was doing and we had a lot of trouble getting the Ministry of Health on board. In fact we didn’t get it on board ’til five years later, ’98. So it was a very difficult time and it was only in ’98 when we held the big conference for the stakeholders in palliative care and we got the finance from SCIAF, the Scottish Catholic International Aid Fund.

I think it was two days we had discussing things and that ended up with us appointing Dr Jagwe. Jan Stjernswärd came as the motivator for that. We ended up employing Dr Jagwe as an advocate: he’s five sessions a week and he’s still five sessions a week because he does some of his private practice as well. And the people from the Ministry formed a group that would look at the needs of palliative care and see what they were going to do, and as a result of that palliative medicine was put into the five-year strategic plan, which was in the year 2000. And we were the first country in Africa to do that. And it wasn’t only written into it - it’s been taken up seriously and they have moved forward on it. So this five years since ’98, has been much better working with the Ministry of Health. So, so that’s how I came to come to Uganda.⁴⁷

The Mildmay Centre. Mildmay International is a UK-based Christian organisation which was established during the 19 th Century for the relief of suffering. In 1988, Mildmay opened the first palliative care service in Europe for people living with HIV/AIDS at the Mildmay Mission Hospital, London. After a study tour to Africa in 1991, Mildmay developed training programmes in East Africa, funded by the British Council. This in turn led to an invitation from the Uganda AIDS Commission to set up a care and training programme in Uganda. The Centre opened in 1998 and Mildmay has an agreement with the Ministry of Health to manage the Centre and its activities until 2008. Julia Downing:

The Mildmay Centre was developed in order to provide and demonstrate good-quality holistic, comprehensive, outpatient care for patients with HIV/AIDS-related health problems, and to teach and train health workers throughout Uganda and the region in such care.⁴⁸

Joy Hospice: Following work as a GP in Oxfordshire, Janet White arrived in Uganda in 1988 in response to what she considered to be a call from God. She worked in Kenya between 1994 and 1998, whereupon she was invited by the Deliverance Church to return to Uganda and establish a medical service in Mbale. The following year, a second clinic was established in Buwasunguyi. By this time, the majority of patients were presenting with advanced cancers and end-stage AIDS. As a result, Janet White began to nurse patients in her home in Mbale. Recognising the gap in provision, she subsequently obtained and renovated a house to create a 5 bedded inpatient unit and home care service that opened on 31 Aug 2001. Janet White:

Patients are mainly seen as outpatients, sometimes with a brief admission for symptom control. Occasionally a patient and family choose to remain at hospice until death occurs. As the service expands, more home visits will take place. Two factors have delayed the home visiting programme:

• patients are scattered over 7 districts and many live over 50kms from hospice
• the hospice vehicle was involved in an accident in November 2002 and has been written off ⁴⁹

Kitovu Mobile Home Care Sister Ursula of the Medical Missionaries of Mary founded Kitovu Mobile Home Care in response to a growing awareness of the AIDS epidemic. As the disease became increasingly apparent, myths and fears developed around the infection. Many of those initially affected were considered to be suffering punishments for past thefts and suffered stigmatisation and marginalisation. Some sold their homes and possessions to make restitution, falling into extreme poverty, children fell out of school, patients were abandoned at the hospital doors. Nurse Rose Nabatanzi comments:

The patients realised there was a need for them to be cared for and they created centres where they could come together and wait for the nurses to come.⁵⁰

In this scenario, Sr Ursula initially cared for infected people with a small team of nurses, gradually increasing the provision to include community volunteers, local co-ordinators and psychosocial support. Food, soap and sugar were provided alongside medicines and with the introduction of morphine in 2000, the home care developed into a palliative care service. Today, each centre is visited every two weeks. Each team carries a supply of medicines and patients are treated for diseases such as malaria and opportunistic infections associated with HIV/AIDS.

Kitovu palliative care physician and medical consultant Mary Simmons explains the impact morphine has made on both patients and health workers:

Pain and symptom relief not only benefits the patients, but the family and even our staff. The suffering of caregivers is intensified when they see their patient suffering. Their relief is obvious when the patient no longer suffers. As for our staff, they repeatedly tell me how grateful they are for palliative care. Before we had morphine, they felt helpless in the face of the suffering of their patients. Now they know something can be done.⁵¹

Significantly, greater attention is being paid to the complexities in offering palliative care for people with HIV infections. Kathleen Defilippi and colleagues:

A major aim is to assist those suffering at home, in situations where, as in Uganda and elsewhere in mid-Africa, up to 57% of the population will never have access to a health worker. In this context anti-retroviral (ARV) treatments and palliative care must be delivered hand in hand, thereby extending quality of life to the poorest people. This requires thinking about palliative care within a preventative and public health model in which care can be delivered across the complete trajectory of the disease and in which well-constructed home-based palliative care services can serve as an important platform for education, primary disease prevention and also the support of patients receiving active treatment.⁵²

Association François-Xavier Bagnoud (AFXB) i s an international organization that sponsors research, programs, and field work in areas such as palliative care, care for AIDS orphans in Africa, humanitarian rights, and paediatric HIV/AIDS care. The Association is named after François-Xavier Bagnoud, a young helicopter pilot committed to rescuing people, who died at the age of 24 during a mission in Mali, West Africa. In 1989, his mother, the Countess Albina du Boisrouvray, joined by her son's family and friends, established and financed the activities of the Association François-Xavier Bagnoud to perpetuate the compassion and generosity that guided François' life.⁵³

AFXB began its operations in Uganda (1990) with the goal of assisting the people of Luwero to develop community based capability to meet the needs of orphans in their care. With support from Mildmay International and MoH, the palliative care service began in January 2003. Medical director Robert Kalyesubula and colleagues state:

[Palliative] care is given along side other supportive programs of income generation activities and provision of education to orphans and vulnerable children. Since the palliative care program started 30 PLWAs have benefited from oral morphine and adjuvant drugs for alleviation of pain… The medical team visits these patients every two weeks and they can also attend to emergencies following calls from the community volunteers. Providing palliative care has alleviated pain and has enabled PLWAs to die in dignity.⁵⁴

Traditional and Western medicine

In Uganda, palliative care is trying to bridge the gap between traditional and Western medicine in a way that affirms the values of each tradition. Lydia Mpanga Sebuyira, director of clinical services at HAU explains:

People prefer to be seen by a traditional healer; someone who understands their language, understands their background and who actually looks at the whole of them. And we’ve found that in what they call the Western medical tradition, people are just so busy that they don’t have time to think about the whole person. So when palliative care comes along and says ‘we’re trying to be holistic as well’, we try to inject back into our practice the kind of things people have been looking for and haven’t found. So I think health professionals are saying ‘we’d like to learn that, but how do we put it into practice?’⁵⁵

This point is echoed by Yahaya Hills Sekagya, a traditional healer and Western-trained physician:

We all walk to the future in the footsteps of our ancestors; and our ancestors have influence on us. In African spirituality, our ancestors can cause disharmony in our life. They are also responsible for a lot of happiness in our life - but when they cause disharmony, we become more conscious of them and we turn back to them. For example: one of the disharmonies I normally experience with my patients is when an ancestor has died and we don’t care about the grave of that ancestor. He can come and cause a disharmony in a person; and it doesn’t need much.

When we do the Western investigations and we don’t see the cause of disease, as a traditional healer we go into the spiritual cause, and we find that the ancestor is disgruntled about an issue. And to get treatment, you just need to do what is needed. Go dig the grave and the madness will go. You do not need any medicines - the Western approach - but you will have solved the issue. So when we are looking at somebody who is sick, we are viewing him as somebody who is in disequilibrium, and accessing how to treat and restore him to equilibrium requires accessing the subconscious levels, which in spirituality we do.⁵⁶