The AIDS Support Organisation (TASO)¹⁹

The AIDS Support Organization (TASO) was founded in 1987 by Noerine Kaleeba, a physiotherapist, whose husband had died of HIV, and 15 other people affected by HIV, most of whom have since died. The founding of TASO was prompted by people unified by common experiences encountering HIV/AIDS at a time of high stigma, widespread ignorance and discrimination.

Palliative Care Association of Uganda (PCAU)

This national association was founded in 1998. It is chaired by Dr Lydia Mpanga; Julia Downing is co-editor of the PCAU journal with Anne Merriman and the organisation has over 180 members. Aims include:

• Introducing and maintaining standards
• bringing together key players and stake-holders
• establishing a journal
• quarterly CME update
• publications
• advocacy
• coordination of education and CME throughout the 56 Districts of Uganda

The following organisations also feature prominently:

African Palliative Care Association (APCA)

This international association was formed after a meeting of Hospice and Palliative Care trainers in Cape Town that led to the Cape Town Declaration. The first APCA steering committee meeting was held in Uganda from 19-20 February 2003. Steering committee members were drawn from: Kenya (Zipporah-Merdin Ali), South Africa (Kath Defilippi), Tanzania (Jacobson) Uganda ( Anne Merriman) and Zimbabwe (Sambulo Mkwananzi).²⁰ In summary, APCA aims to:

• promote study, knowledge, training and research in palliative care
• foster networks and links at all levels of palliative care
• address ethical issues
• establish an international communication network
• sponsor publications
• disseminate achievements
• promote access to resources

Objectives include:

• promotion of standards
• advocating for palliative care at governmental level
• securing the availability of drugs
• encouraging the development of national associations within Africa
• promotion of training programmes
• devising standard guidelines
• advocacy

The establishment of APCA builds on Anne Merriman’s formative work advocating for palliative care in sub-Saharan Africa; a role enhanced by the Diana Fund’s commissioning of Hospice Africa Uganda to deliver training and promote palliative care development in their nine designated countries.

The World Health Organisation (WHO)²¹

The WHO is currently involved in a community health approach to palliative care for HIV/AIDS and cancer patients in Africa. This joint project - involving the five countries of Botswana, Ethiopia, Tanzania, Uganda and Zimbabwe - seeks to improve the quality of life of HIV/AIDS and cancer patients in sub-Saharan Africa by developing comprehensive palliative care programmes with a community health approach. The project contains four major elements: team building, situation analysis, needs assessment and action plans.

From the outset, the gains made in Uganda were recognised by WHO:

In the last ten years, thanks to NGO initiatives, progressive government involvement and the support of the WHO country office, Uganda has been able to include palliative care in the government health agenda which has resulted in the allocation of resources, improved morphine availability, and the provision of training at all levels of care and to undergraduate and post graduate health professionals. It has integrated palliative care into the existing health system at a district level and is planning to extend the programme to other districts and eventually to the rest of the country.²²

In its final report, the WHO also recognised the value of research undertaken in Uganda by Ekiria Kikule regarding end of life care:

A needs assessment study recently undertaken in Uganda (Kikule, 2000), showed that the distribution of terminally ill patients was 73% HIV/AIDS, 22% cancer, 3% both and 2% other diseases. The majority of patients preferred to be cared for at home and, in fact, 87% of the caregivers were family members who were very supportive. Among the various needs shared by patients and their caregivers, the major ones were food and welfare. Poverty and sickness combined to tp put families in a critical situation. Patients experienced pain and other symptoms quite often and 65% declared them a problem. The main fears expressed by the patients were fear of death and abandonment. The study concluded that the home is the best place to care for the terminally ill.²³

The Diana, Princess of Wales Memorial Fund²⁴

The Diana Fund has formed the view that palliative care plays a vital role in the management of life-limiting illness. In particular, palliative care is ideally suited to home based care; it makes use of affordable drugs and it empowers the family to care for their members more effectively.

In 2001, the Diana Fund launched a palliative care initiative which focussed on nine countries in sub-Saharan Africa ( Ethiopia, Kenya, Malawi, Rwanda, South Africa, Tanzania, Uganda, Zambia and Zimbabwe) and committed an initial £5 million over 5 years. The Fund does not implement palliative care programmes; rather, it supports locally-based partners who are already implementing programmes or who wish to incorporate palliative care into existing home based care services.

With regard to Uganda, the Diana Fund supported both in-country developments and at the same time, commissioned Hospice Africa Uganda to advocate for palliative care in Central and East Africa.

In Uganda, grants have been awarded:

• to continue the work of Mbarara Mobile Hospice: salaries, vehicle running costs, office overheads and evaluation: 2 year grant, £60,000 (Hospice Africa Mbarara)
• to consolidate the HBC programme in three districts: staff salaries, transport costs, drugs and training: 3 year grant, £81,995 (Medical Missionaries of Mary, CAFOD²⁵)
• for capacity building in end of life/ palliative care for HBC programme in Kampala; training, welfare fund, transport, drugs: 3 year grant, £14,200 (Nsambya Home Care Services [St Francis])
• for palliative care nurse specialist training: £14,168 (Hospice Uganda).

In Central and East Africa, Hospice Africa Uganda became the Diana Fund’s partner agency in a 3 year project which attracted funding of £300,000. During this period, Hospice Africa Uganda would:

• provide technical support and advice on the identification of countries with the capacity and political will to initiate palliative care services
• provide guidance and training to such countries
• set up and run a Distance Learning Diploma in Palliative care for African countries
• set up a resource centre of palliative care materials for Africa, at Makindye, Kampala
• improve services within Uganda so that a model can be developed that works for the poorest and that can be duplicated in other African countries.

Anne Merriman comments:

In 2001, the Diana, Princess of Wales, Memorial Fund in London, invited Hospice Africa Uganda to be their technical experts in assisting other African countries to start or strengthen palliative care services using the public health approach and integrating with existing health systems. Working with World Health Organisation, this initiative has brought the Hospice training programmes to several other African countries.²⁶

President’s Emergency Plan for AIDS Relief (PEPFAR)²⁷

During his State of the Union address in 2003, President Bush announced his PEPFAR initiative; this groundbreaking intervention encompasses HIV/AIDS activities in more than 75 countries and focuses on 15 countries worldwide – of which Uganda is one of 12 in Africa – to develop integrated care and treatment programmes (Table 5). Over the next 5 years, PEPFAR is donating a total of US $15billion, of which 15% is earmarked funding for palliative care. This has dramatically changed the palliative care landscape in Africa, as bids for new initiatives are attracting the funding for implementation. Four main areas are targeted:

• prevention of HIV transmission
• treatment of AIDS and associated conditions
• palliative care for HIV infected individuals
• care for AIDS orphans and other vulnerable children

UK Forum for Hospice and Palliative Care Worldwide²⁸

This NGO, formed in 2001 to support the development of palliative care in resource poor countries, falls under the umbrella of Help the Hospices. Since inception, support has been offered to Uganda via the following funds and links:

• Distance Learning Diploma in Palliative Care: £1,500 (Hospice Africa Uganda)
• Meeting with Ronnah Abinaitwe, Resource Manager HAU, London 2003
• Links with National Association via the new initiative beginning The Hague
• 2003Advocacy work with the Department for International Development (DfID) and parliamentarians

Table 5 Countries of Africa involved in PEPFAR, Diana Fund and WHO projects

Joint United Nations Project on HIV/AIDS(UNAIDS)²⁹

Over the past years, the UN system and UNAIDS Country Office have been involved in a wide range of interventions related to HIV/AIDS prevention, care and mitigation. They also played a key role in strengthening the national coordination system (Uganda AIDS Commission) and developing effective partnerships to improve national responses to HIV/AIDS.

Foundation for Hospices in Sub-Saharan Africa (FHSSA)³⁰

This US-based organisation was established in November 1999 to support the efforts of hospice workers in Africa. An international consultation was held in 2000 to devise a strategy for hospice and palliative care development in the sub-Saharan region. Recommendations for funding were approved and supported by standards for African programmes seeking assistance. These standards were developed from those adopted by the Hospice Association of South Africa. During 2004, FHSSA became part of the US based National Hospice and Palliative Care Organisation.