Dr Anne Merriman - Founder, Director, Medical Services and Education, Hospice Africa Uganda: interviewed by Michael Wright, 9 March 2004. This interview is in accordance with the broader IOELC protocol that places the interview in the public domain and grants access to bona fide scholars.
Length of interview: 1 hour 18 minutes.

Anne Merriman recalls her childhood as a member of a religious family in Liverpool. When four years old, she declared an interest to work in Africa and as she grew up, became profoundly affected by the death of her 11 year old brother from cancer. After leaving school, she joined the Medical Missionaries of Mary, a religious order founded in 1937 to care for the sick in Africa. After an unfulfilling time working in a laboratory, she was accepted by the sisters for medical training and thereafter undertook a nine year placement in Nigeria. Changes within the Catholic Church after Vatican II - combined with the illness of her mother - caused her to leave the Order after 20 years service and return to Liverpool. There she practised geriatric medicine. As she became committed to palliative medicine, she organised a conference with Cicely Saunders that began a series of developments in the Knowsley and Liverpool area. After her mother died, she moved to Singapore where she focused on the needs of an ageing population. Starting in 1985 with a group of volunteers, she commenced a palliative care home care service to meet the needs of patients who were not benefiting from conventional chemo or radiotherapy. This followed on research carried out from NUS where she was working in Community Medicine. This eventually became a palliative home care service under the Community Chest (Social Services) and commenced from her 22nd floor flat. As her contract with the national University of Singapore (NUS) came to an end, Gillian Petrie Hunter suggested she develop the newly-established service in Nairobi; a commission she accepted in 1990 on condition the government procured oral morphine. Despite the potential in Kenya, she became frustrated by excessive bureaucracy and eventually moved to Uganda (1993) to set up a model service capable of implementation in other resource poor countries. She goes on to speak of the challenges she faced, how they were overcome and how palliative care was eventually incorporated into the government’s five year strategic plan. She then reflects on the spiritual dimension of health care, of her hopes for the future, and of the relationship between supportive care and palliative care - drawing particular attention to the benefits of grafting pain control onto existing supportive care networks, and the essential task of procuring affordable morphine.

Anne Merriman; interviewed by David Clark - 20 July 2004.
Length of interview: 18 minutes

In a short interview, published in full on this website, Anne Merriman speaks about the impact of HIV/AIDS in Africa. In the past, support has been available for treatment and behaviour change relating to HIV/AIDS but until recently, there has been little forthcoming for the dying. Many want to die at home, but that is not always possible. Poverty, lack of food to take with medicines, a dearth of trained personnel and the inaction of governments provide barriers to palliative care development. Yet countries like Zimbabwe and Kenya have shown what can be done. Since 1993, Hospice Uganda has developed a model of care that can be utilised in other resource poor countries of Africa. With the impetus provided by the PEPFAR initiative, developments will begin to happen more quickly and on a broader front. A significant development has been the establishment of the region-wide African Palliative Care Association (APCA) which held its first meeting in June 2004 In Arusha, Tanzania; representatives attended from 20 African countries. These developments, together with a wider accessibility to morphine will provide significant opportunities for palliative care development in the future.

Dr Jack Jagwe - Senior Adviser, National Policy, Drugs and Advocacy, HAU: interviewed by Michael Wright, 10 March 2004.
Length of interview: 29 minutes.

Jack Jagwe speaks of his 30-year involvement with the Government of Uganda and of his role as Deputy Medical Director responsible for clinical services. He has a strong commitment to palliative care and in 1998 was appointed chairman of the task force which formulated the national palliative care policy which became incorporated into the government’s strategic plan, 2001-2005. He recalls how morphine was available during the 1960s and ’70s but then became unavailable during Uganda’s period of political turmoil. Oral morphine was introduced with the inception of palliative care under the auspices of the Joint Medical Store. He speaks of Uganda’s 20-year experience of HIV/AIDS and of the open way in which the disease has been confronted, right down to the village level. Based on his personal experience, Jack Jagwe is enthusiastic about convincing professionals and ministers of the benefits of palliative care both in Uganda and other African countries. Finally, he tells of the major successes in Uganda: of the government’s acceptance of the need for palliative care; of morphine availability; of the new generation of doctors leaving medical school with an understanding of palliative care; and of the distance learning course validated by the prestigious African University of Makerere.

Dr Ekiria Kikule – Deputy Director and Research Co-ordinator, HAU: interviewed by Michael Wright, 10 March 2004.
Length of interview: 1 hour 9 minutes.

Ekiria Kikule met Anne Merriman and Jan Stjernsward when she took a Master’s degree in public health. She was invited to join the hospice as a researcher and became Executive Director in 2002. She tells of her commitment to hospice after being influenced by a succession of home visits; her sister’s painful death from cancer, and another sister’s relief from suffering after taking morphine. She highlights ethical issues surrounding palliative care: of truth-telling and breaking bad news; of relationships with traditional healers (herbalists); and of the benefits of collaborative working. As a result, herbalists are encouraged to assist with the provision of natural ingredients, such as laxatives, whereas hospice retains an input into pain relief. Turning to the future for Hospice Africa Uganda, she speaks of the component roles of service, training and modelling – and of the strain arising from the demands on the organization due to its unforeseen success and growing requests to ‘scale up’. Although the hospice is not based on a particular faith, she considers that many staff are drawn to the service because of their personal faith, a feature which is manifest in many ways, not least in the generous gifts of time. In future, closer co-operation with faith based organizations is expected to help the hospice reach the poorest people in very remote areas, although a current priority is also to secure essential funding.

Peter Mikajjo – Dispenser, HAU: interviewed by Michael Wright, 10 March 2004. Length of interview: 28 minutes.

Peter Mikkajjo tells of his background working in a mission hospital, of his interest in pain, and how he moved to Hospice Africa Uganda in 2001. He describes how morphine powder is supplied by the Joint Medical Store, how he mixes the powder into a solution and then dispenses liquid morphine in three different strengths, coloured appropriately. He goes on to speak of the internal procedures required to monitor the use of morphine and how prescriptions are balanced with the records of morphine dispensed at the end of each day. In addition, patients sign a record sheet to confirm their morphine use and each week these records are returned to the pharmacy and reconciled with the stocks issued.

Michelle McGannon – Co-ordinator, Distance Learning Diploma, HAU : interviewed by Michael Wright, 10 March 2004.
Length of interview: 33 minutes.

Michelle McGannon speaks of her role as co-ordinator of the distance learning diploma in palliative care: a course she helped to establish which has attracted widespread interest. She intends to remain in Uganda until October 2004, by which time she will have completed more than three years in Kampala, having previously been with the hospice during 98/99. She comments on the high standards of professionalism among the staff. A key feature of the distance learning course is that it is African in nature, located within an African University, with modules written by African-based educators. A result, every element is culturally and clinically appropriate to Africa. Importantly, modules include an education element so that students can pass on their skills in their own country. Interest for the October 2004 intake is high. In future the department is looking to build on the current successes, capitalise on the enthusiasm of the students, fine tune the curriculum, and provide more clinical support. In five years’ time, it is hoped to offer a Bachelor’s course - and a Master’s course in ten.

Fatia Kiyange – Education Administrator, HAU: interviewed by Michael Wright, 10 March 2004.
Length of interview: 22 minutes.

Fatia Kiyange trained at Makerere University and tells of her background in social work and social administration, and how she eventually arrived at Hospice Africa Uganda (department of education and training) in April 2000. At that time, the education block had not been constructed and the small team worked in one room of the hospice. Nevertheless, there was a comprehensive range of courses which targeted medical students, spiritual leaders, health professionals, and volunteers – and which now form the core of the expanded provision. She speaks of the value of the sensitization programs, of the challenges posed by reactionary (senior) health professionals and the strategies used to develop palliative care throughout the country. As the courses developed, the department scaled up to a staff of 10, and Hospice Africa Uganda became regarded as a significant training institution. The aim is now to integrate palliative care into all 56 districts in Uganda with an accompanying training program to support these clinical innovations.

Ronnah Abinaitwe – Resource Centre Manager: interviewed by Michael Wright, 10 March 2004.
Length of interview: 32 minutes

Ronnah Abinaitwe tells how she graduated in Library and Information Science at Makarere University and now manages the resources centre at Hospice Africa Uganda. This centre has been developed to include computer work stations, bookshelves, storage space and a meeting area – all with hand-made furniture from a group of German Fathers in Hoima. As the first person appointed to the centre, Ronnah has learnt how to combine library and resource management skills, and has been helped in this respect by a placement with Avril Jackson at Hospice Information in London. The centre is heavily used by hospice staff and by a wide range of students and visitors – frequently from other African countries. She sees herself as part of the hospice team and looks forward to the day when the centre expands to include multiple copies of key books to take pressure off the popular titles.

Dr Lydia Mpanga Sebuyira – Director, Clinical Services, HAU: interviewed by Michael Wright, 21 Sept 2004.
Length of interview: 37 minutes

Lydia Mpanga Sebuyira was born in Uganda but spent extended periods in England, where she studied medicine at Oxford University. After working in a hospice in Sunderland, she returned to Kampala and bumped into Anne Merriman – wearing a Hospice Uganda T-shirt - on one of the wards. As a result of that meeting, she became a visiting consultant at the hospice while lecturing at the medical school for the next five. As she prepared to take some of Anne Merriman’s responsibilities, her husband was offered a position in South Africa – and Lydia subsequently took up a position at St Francis Hospice, Port Elizabeth. She recalls the impression that the South Africa experience made upon her: the struggle against poverty; the stigmatisation of HIV/AIDS patients; and the role of the local church – factors which impacted upon her advocacy role. Returning to Uganda in 2003, she has re-joined the hospice team as Director of Education; a position that looks increasingly beyond the borders of Uganda to other African countries which request assistance.

Julia Downing – Director, Mildmay International Study Centre, Kampala: Interviewed by David Clark 2 June 2004
Length of interview: 36 minutes

Julia Downing has wide experience of HIV/cancer care and palliative care in the UK both clinically and in the field of education. She worked in a mission hospital in Zambia and when a post was advertised for a vacancy in Uganda, returned to Kampala as the Director of Mildmay Study Centre (2001). The Centre now offers a wide variety of courses and reaches into the rural areas via mobile education teams. These initiatives are underpinned by Julia’s doctoral studies: an evaluation of the mobile training team programme in the rural setting. She underlines the Centre’s focus on paediatrics, the importance of counselling, and the role played by religious leaders in rural areas - and of the need for cultural sensitivity in the face of different tribal traditions. Finally, she describes the background to the Cape Town Declaration and her role in the newly formed Africa Palliative Care Association.

Dr Yahaya Hills Sekagya – General Secretary, National Integrated Forum for Traditional Health Practitioners, Uganda; President PROMETRA Uganda: Interviewed by Michael Wright, 9 Sept 2004.
Length of interview: 20 minutes

Yahaya Hills Sekagya outlines an African concept of illness that integrates the spiritual and physical domains of personhood with strong ancestral connections. As a traditional health practitioner who is also a Western trained physician, he articulates the benefits and drawbacks of each approach and speaks of the possibilities for collaboration – an activity that is already proving beneficial in Uganda. He reflects on the practical problems of reaching the poor in remote rural areas, and of the difficulties of dispensing modern medicines in such circumstances. Against this background, he advocates for a better understanding of how herbal remedies and Western treatments can complement one another.

Dr Emmanuel Luyirika - Director of Medical Services: The Mildmay Centre, Kampala: Interviewed by Michael Wright, 11 March 2003

Emmanuel Luyirika speaks about the work of the Centre since it opened in 1998. Focusing exclusively on AIDS patients, this encompasses a broader remit than hospice/ home based care organizations, since team-members are involved in a continuing process of sustaining life, dealing with opportunistic infections and helping people return to work - as well as providing care at the end of life. Currently, 7545 patients are registered with the organization, of which 5000 are regular patients - half of them children. Networks have been established countrywide and patients are also drawn from neighbouring countries. Challenges faced by the new organization relate to the affordability of ARVs and the reluctance of some families to invest in a child with a life-limiting disease. Successes relate to the public welcome now given to AIDS patients and the obvious signs of improvement in human lives – weight gain, hope and the capacity to return to work.

Derek Atkins - Centre Director: The Mildmay Centre, Kampala: Interviewed by Michael Wright, 11 March 2003

Derek Atkins speaks of patient provision at the Centre and of the administrative demands inherent in a growing organisation. He draws attention to: the taboo of HIV testing for children; the ethical issues surrounding truth-telling; the potential impact of a positive test on parents; and the support need of families. Successes include the organisation’s capacity to seamlessly meet the demands of a growing patient base.

Margaret Mawanda - Public Relations Officer: The Mildmay Centre, Kampala: Interviewed by Michael Wright, 11 March 2003

Margaret Mawanda recalls the opening of the Mildmay Centre by Princess Anne, and how many thought that Princess Diana had been involved too, due to her well known interest in patients with HIV/AIDS. The buildings are impressive and this aspect of the Centre gave rise to a widely-held misunderstanding: that the Centre was designed and intended for whites. She tells of the determined – and successful - public relations effort to change this misapprehension and how the centre has now been warmly accepted by patients and the local community.

Dr Janet White – Founder, Medical Director: Joy Hospice:Interviewed by Michael Wright, 11 March 2003

In this interview, Janet White recalls how she founded JOY Hospice (Jesus first, Others second, You last) in 2001. She first came to Uganda with the Deliverance Church in 1988 and thereafter combined medical and educational work. After a spell in Kenya (1994 - 1998) she was invited by the 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 a gap in provision, she then obtained and renovated a house, creating a 5-bedded inpatient unit and launched a palliative care service on 31 Aug 2001.

Rose Nabatanzi - Palliative Care Nurse: Kitovu Mobile Home Care: Interviewed by Michael Wright, 11 March 2003

Rose Nabatanzi tells how 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 apparent, myths and fears developed around the infection. The early sufferers were thought to be punished for past thefts and consequently became stigmatized and marginalized. Sufferers sold their homes and possessions in an attempt to make restitution, falling into extreme poverty; their children dropped out of school and relatives were abandoned at the hospital doors. In this scenario, Sr Ursula cared for infected people with a small team of nurses, gradually increasing the provision to include community volunteers and local co-ordinators. Food, soap and sugar were provided alongside medicines and with the introduction of morphine in 2000, home care developed into a palliative care service. Today, the service covers 124 centres throughout three districts of Uganda.

Winnie Elem - Palliative Care Nurse: Lira Regional Referral Hospital, Northern Uganda: Interviewed by Michael Wright, 11 March 2003

Winnie Elem speaks of her work at the Lira Regional Referral Hospital (288 beds) where she and her colleague receive referrals to their palliative care unit. Referred patients have either HIV/AIDS or cancer. The unit has 1 bed for acute cases and they each see around 5 patients per day. Morphine is available. A community home care service is provided within a radius of 5 kilometres from the hospital - a distance generally considered to be within walking distance (or preferably a bicycle ride).