Professor David Allbrook – chaplain, Kalamunda Hospital, Perth, Australia; formerly dean of the medical faculty – University of East Africa: interviewed by Michael Wright, 11 February 2005.
Length of interview: 1 hour 7 minutes.

David Allbrook was born in London (1923). A committed Christian, after qualifying in medicine from University College, London, his thoughts turned to the mission field; an opportunity denied him after he developed TB. He entered academic life, developing an interest in research (especially muscle re-generation) and took up a post at Makerere Medical College, Uganda (1952). He was offered a Fulbright Scholarship in the US, where he became interested in electronic microscopy, and later returned to Makerere to set up the first EM Unit in Africa. As the countries of Uganda, Tanzania and Kenya became independent, he became dean of the medical faculty of the University of East Africa. In 1965, he left Africa to become Professor of Anatomy at the University of Western Australia, a position he held until in 1986. During the latter part of his career, David Allbrook developed an interest in palliative care. He had met Cicely Saunders during the 1940s and spent time at St Christopher’s in the early 1980s. He subsequently became involved in palliative care development in Australia, in India, and in countries of Africa. In 2001, he was awarded a travel fellowship by the International Association of Hospice and Palliative Care, and advised on the establishment of a home care service in the Meru district of Uganda. In this wide-ranging interview, David Allbrook tells of his medical career, his research interest, his involvement in hospice development, the impact of his faith upon his life, and the place of medical ethics. He currently serves as chaplain in a hospital near his home in Perth, Western Australia.

Jane Appleton – programme leader, palliative care, School of Health and Social Care, Oxford Brookes University, (UK): interviewed by Michael Wright, 1 Feb 2005: Length of interview: 20 minutes.

Jane Appleton became involved in palliative care education in Kenya during 1999 amid increasing interest in the establishment of a diploma course for health professionals. Brigid Sirengo had previously undertaken training at Oxford Brookes University and contacts had been maintained; importantly, she was aware of the benefits that such a course would bring and was an enthusiastic advocate of palliative care education. Eventually, the first course began with 9 students in 2000, building up to 15 students by the third year. The course is jointly run by Nairobi Hospice and Oxford Brookes and has attracted a wide range of participants: doctors, nurses, physiotherapists, social workers and counsellors. In addition to local interest, applications have been received from Ethiopia, Uganda, Malawi, Tanzania and Zimbabwe. Jane Appleton speaks of the challenges associated with the course: of securing funding; the demands of distance learning; access to IT; and the availability of palliative care literature. She speaks also of the nature of a practice based course in a different cultural setting, of the commitment of the students and teaching staff, and of her future hopes for palliative care education in Kenya.

Dr Zipporah Ali - Senior Medical Officer: Nairobi Hospice: Interviewed by David Clark, 2 June 2004.
Length of interview: 29 minutes.

Zipporah Ali first became involved in palliative care as a volunteer, in 1994, whilst working as a medical officer at the National Hospital in Nairobi. In 1996 she was employed by Nairobi Hospice and undertook a programme of training in palliative care, at Oxford Brookes University, in the UK. She describes the work of Nairobi Hospice – its inpatient and day care services, home care programme (within a 25km radius of Nairobi), advocacy work and extensive training programmes, linked to Oxford Brookes University. The work is supported by the Friends of Nairobi Hospice. There are plans for a new hospice building, on land donated by the government. Initially cancer patients only were cared for, but since 2002 the service has also been available to people with HIV/AIDS. She comments:

‘We’re sensitive about cultural issues, we encourage patients to be in their homes and not in hospitals; encourage that at home. We actually sensitise the family and talk to them and prepare the families for death at home. Because these patients, if they go to the hospitals, because particularly if they’re HIV/AIDS positive or they’re really terminally ill with cancer, nobody’s going to pay them attention now, so, people actually keep away from them, the medical staff and everybody else. So we prefer them to be, we prefer to have them in their homes and they’re happier in their homes, and even the family finds it easier that they have to be in the home with the patients and not visiting, travelling distances to be with the patient’.

Zipporah Ali goes on to talk about the wider development of hospice services in Kenya and the role of Nairobi Hospice in supporting these. A member of the newly created the steering group and then board of the newly-created African Palliative Care Association, she describes the origins and early plans of APCA.

Stephen Gitonga – palliative care coordinator, Maua Methodist Hospital: interviewed by Michael Wright, 22 September 2004.
Length of interview: 24 minutes.

Stephen Gitonga is a trained nurse who responded to a Maua Hospital initiative to establish a palliative care service in eastern Kenya. After visiting Hospice Africa Uganda, he was instrumental in developing a palliative home care service and now holds the position of palliative care coordinator. As awareness of palliative care was raised, local communities were mobilized and began to take responsibility for sick people in their localities. Since 2002, three pilot programmes have begun, each training local volunteers to identify those in need of palliative care and to deliver a basic level of service. This home based care is supported by professional nurses and physicians, to whom referrals are made as appropriate. Stephen Gitonga speaks of the challenges establishing a new service; of the way morphine is prescribed and dispensed; of the improvement of patients on antiretroviral therapy; and of the benefits of community involvement and local clinics. There is still much to be done: myths around morphine continue; despite a 60 % subsidy from the Diana Fund, patients have find 40 % of the cost of their care; stigmatization and social exclusion is common place. Despite the difficulties, support from international donors has helped nurture the service; the Ministry of Health provides testing kits and ARVs for 50 patients free of charge; and the network of faith-based organizations ensures that palliative care service reach the poorest areas of the community.

Dr Bactrin Killingo - physician, Meru Hospice. Interviewed by David Clark, 2 June 2004. Length of interview: 32 minutes.

Bactrin Killingo trained in medicine in Kenya and became interested in palliative care issues in 2000, when working a rotation at the Nairobi Hospice. Here he saw patients coming from vast distances and resolved to try to set up a service in his own home village, of Meru, where – with the assistance of Nairobi hospice – he began to raise awareness of the issues. By 2002 he had set up a community-based non-government organisation, Meru Hospice. A UK-based organisation, Hospice Care Kenya also assisted with funding. Initially staff worked without pay. In March 2004 the hospice was twinned with Hospice Care Inc, in Wisconsin, USA. Meru Hospice seeks to address six issues in a rural context: treatment of symptoms and opportunistic infections; care and support; nutrition; care of orphans and vulnerable children; economic empowerment; and rehabilitation. Approximately 80% of costs are donor dependent, and the balance is raised locally. Bactrin Killingo remarks: ‘Now that we’ve started something, it’s like a bush-fire, we just can’t put it off’.

Dr Bactrin Killingo- physician, Meru Hospice: Interviewed by Jenny Hunt, 2 November 2004. Length of interview: 48mins.

Although Bactrin Killingo was brought up in the city of Nairobi, his family originated in Meru district. His parents encouraged their children to maintain strong links with their cultural heritage. They also imparted virtues of caring for others and making a difference in the lives of others. Such values affected his decision to study medicine, but he found the field of medicine frustrating in its limitations to spend quality time with a patient and to see beyond the purely physical. A 3 month rotation period at Nairobi Hospice while working at Kenyatta Hospital changed his perception of patient care.

It is there that I got to interact with lots of patients and palliative care made a lot of sense to me because it is first of all something that I didn’t have the opportunity to learn in medical school, it wasn’t in the curriculum. But over and above that I got to interact with patients who came from my village, and quite a number of them needed that and they came from far away, almost 300 kilometres, to sometimes come for two-weekly reviews or month reviews, or to get two weeks’ supply of morphine, which at the end of the day didn’t make sense to me. So what I did was, after my doctor rotation programme, I decided that palliative care is what I want to do, so I went back.⁵⁰

Realising the value of a relationship between doctor and patient, Dr. Killingo saw how possible it was to gather a full picture of the patient’s needs, and how much more comprehensive care could be. With effective pain relief patients could begin to manage other issues, and he saw in palliative care “a completeness in provision of care”. He returned to Meru to undertake a needs assessment and confirmed that there was a gap in services for the terminally ill. Knowing the limited professional resources available, his vision has been to encourage the community to help in providing good care for the dying. Simple teaching methods and practical experience will achieve this. The model of community involvement is incorporated into the Meru Hospice logo that symbolizes family, community and health care providers surrounding the patient.

Dr. Killingo shares his dream to spread palliative care to as many people as possible in this district that helped send him to Medical School. His determination to ensure sustained funding to achieve this is motivated by his belief that human resources are vital to the provision of palliative care and need to be paid for. He concludes that palliative care is not only an important service, it is essential in this environment of poverty and AIDS.

Brigid Sirengo - Chief Executive Officer, Nairobi Hospice : interviewed by David Clark, 2 June 2004.
Length of interview: 29 minutes.

Brigid Sirengo originally trained as a registered nurse and then as a registered midwife, a community health nurse, and then had further training in nursing education and administration. In 1989, whilst working in Nairobi, Kenya, she undertook a continuing education programme which cultivated her interest in the care of terminally ill people. Soon afterwards she was appointed to the embryonic Nairobi Hospice. She undertook further training in Zimbabwe at Island Hospice, followed by training at several UK hospices and centres. She obtained a BSc in Palliative Care from Oxford Brookes University through distance learning. She is now Chief Executive of the Nairobi Hospice.

Brigid Sirengo concludes with some reflections on what involvement in palliative care has meant for her personally:

‘Working in palliative care has been a very enriching experience for me … It has helped me to grow; it has changed my perception and life. I no longer take my life for granted … it has helped me to be much more focused and to really concentrate on things that matter in life, because when you see, more or less daily, people very sick and within a very short time they will have died and gone, then it helps me to really evaluate my values, my perceptions, so that I really try to … set my own priorities and concentrate on those things that matter’.

Brigid Sirengo- Chief Executive Officer, Nairobi Hospice; Zipporah Ali - Senior Medical Officer, Nairobi Hospice; John Njoka - Senior Nursing Officer, Nairobi Hospice. Interviewed by Jenny Hunt, 1 November 2004.
Length of interview: 56mins

Brigid Sirengo provides a history of the development of Nairobi Hospice in the early 1980s. She tells of a patient dying in pain of cancer of the cervix. This alerted Ruth Wooldridge who was nursing the patient, to the need for pain control. A workshop in February 1988 identified that palliative care should be available for terminally ill patients and in 1990 the first patients were seen. Nairobi Hospice was created to provide this service and to provide palliative care training.

Zipporah Ali continues by explaining the referral links between government and private hospitals, and Nairobi Hospice. She describes the extensive training programmes that have been developed for health workers, and the rotation system for doctors to gain experience in the hospice setting.

Focusing on the role of the newly formed Kenya Hospice and Palliative Care Association, Zipporah Ali explains that this national body is well placed to import bulk supplies of drugs that will then be re-distributed to other hospices. It will also concentrate on developing and training further hospices countrywide. Good relationships with the Ministry of Health result in this hospice being consulted on national policies relating to end of life care. The donation of a plot of land on which to build their new premises is proof to this team that the hospice concept is accepted by the Kenya government.

John Njoka gives his background training as community psychiatric nursing. This equips him to help with palliative care training, and to visit patients both at home and at the hospice.

The team provides information on the facility that serves the 3 million Nairobi population as well as referrals from upcountry. Explaining that the hospice was initially developed to attend to cancer patients, Brigid Sirengo highlights their involvement with patients dying from AIDS. There is discussion around the numbers of patients seen over the years since inception, and a figure of 500 new patients in the year confirms the increasing demand for this comprehensive service that includes a day centre and home based care.

The interview ends with the team summarising their successes and difficulties. An external evaluation confirmed that service provision is good, and this is borne out by the positive feedback received regularly by patients and families. An area of difficulty is funding. Zipporah Ali describes the current trend of increasing community financial support in the face of dwindling external funding.

Ruth Wooldridge – co-founder, the Nairobi Hospice: interviewed by Michael Wright 23 Jan 2005. Length of Interview: 1 hour 3 minutes.

Ruth Wooldridge trained as a nurse at St Thomas’s Hospital ( London) and in her early career, became concerned about the care of cancer patients and their families. She worked as a volunteer in Uganda (VSO) during the 70s and returned to Africa in 1982 to take up a nursing post in Kenya. It was during this time that she met Nancy, a young teacher with cancer whose painful death made a deep impression on her. As she advocated for hospice, she persuaded Robert Twycross to visit Kenya on his way to South Africa. The effect was overwhelming and resulted in a grass roots movement towards a hospice service. With Jane Moore she wrote a proposal for Kenyan government and with local support from Professor Kasilli, a piece of land was acquired in the grounds of Kenyatta Hospital ( Nairobi). The Tudor Trust funded the erection of premises, an education project began and the hospice opened for patients in 1990. Ruth Wooldridge speaks of the challenges facing hospice development in resource poor countries, of the need for communication and policy change, of the place of spirituality and care for family members. She then turns to her work in South Africa, India and, more recently, in Rwanda. Ten years after the genocide in Rwanda, she was shocked to find how much needed to be done to support impoverished communities. She was heartened, however, by the presence of visionary people who, with appropriate training, could help to establish palliative care services.