Psalm 38: 10 'My heart pounds, my strength fails me, even the light has gone from my eye.'
The idea of palliative care is still a relatively new one for East Africa. A definition of palliative care is the 'provision of care for people with an illness for which there is no cure'. The philosophy is to relieve pain and manage symptoms so that the patient has as peaceful and pain free an end to his or her life as possible. This approach, which is becoming increasingly popular worldwide, aims to allow the patient and his/her family to have the best quality of life achievable with terminal illness. It is holistic in that it addresses not just the physical needs of the patient but also the social, spiritual and psychological needs as well. I have witnessed first hand the contribution that the Mildmay Centre and its training are making to the lives of patients and their families living with HIV in East Africa. As an outpatients tertiary referral centre and a regional training centre, the volume of patients is high and the demand for multidisciplinary services is continuous. Uganda, in spite of an improvement in transmission rates, continues to have a disproportionate number of people with HIV who are going on to develop AIDS and thus require specialist services.
Mildmay International, a Christian AIDS Palliative Care specialist Non-Governmental Organisation [NGO], has been providing outpatient services in Uganda since 1998. Based on a long history of specialist AIDS care service provision in the UK, and comprehensive research into the problem of AIDS in Africa, Mildmay was invited by the Ugandan government to provide a tertiary referral centre. The rationale for this approach to AIDS care in Africa is an attempt to relieve suffering and respond in a cost effective way to a disease that has become an everyday reality for Ugandan families. Palliative care can take place in resource-limited environments and can, in part, be carried out by families and friends if correct training is given. For this reason, palliative care in Africa is not only appropriate, but also cost-effective. Though in many cases, there is insufficient money in the household to buy even simple analgesics, a lot can be done providing that the 'caretakers' have a good understanding of basic palliative care.
Palliative care patients in Uganda have multiple needs. I found that the best way in which to identify these needs was to observe, listen and discuss with patients and their families . Clearly the needs felt to be important by the health care professionals may not always be the same as those that the patients themselves feel to be the greatest. However, through the assessment tools used at the Centre and the use of open questions one could establish what were the more obvious needs experienced by these patients and their families. In the majority of cases, the presenting need is for medical diagnosis and treatment. However, Mildmay seeks to provide a multi-disciplinary service by incorporating pastoral care and counselling, nutritional advice, physiotherapy, occupational therapy, children's rehabilitation and day care within its palliative care package. More often than not, patients have limited income and so it is often impossible to pay for medical treatment. There is therefore a clear need for low energy, intense income generation schemes, and clearly the need for a reduction in the cost of diagnostic tests and certain treatments.
Alongside these psychological and material needs, there are needs that are less visible. For example, the need for an old jajja (grandmother) to explain to the seven orphans for whom she is caring what has happened to their parents. The need for understanding from schools and head teachers when an HIV positive child still wants to attend school but is forced to miss certain classes due to sickness or doctor's appointments. The need for dying parents to explain to their children and prepare them as well as possible for the future. These needs are enormous and often intangible.
Holism in palliative care is vital, as patients do not only suffer from the physiological effects of their disease, but also from immeasurable stress and demands on their material and emotional resources. I observed all the components of multidisciplinary care for people attending the Centre, and actively engaged in psychological support through counselling as well as nursing duties and health education for patients and their families. I saw and heard of patients who had benefited greatly from this holistic approach. Alongside the counselling service, pastoral care and support is offered, because Mildmay recognises people's spiritual needs as important. Holism is also central to the care philosophy used for the HIV positive children attending day care at Mildmay. In what are often difficult and financially very limited families, with little opportunity for income generation and social support, the rehabilitation and care package provided by Mildmay is considered an invaluable contribution.
The care and support of families and others significant to the person with HIV, is a continuous and demanding task. Some patients return weekly for symptom and pain control, particularly when they reach end stage disease. The Mildmay Centre, along with many other missions and NGOs are making a valiant contribution towards relieving suffering in Uganda - but the task is enormous.
The idea of palliative care is still a relatively new one for East Africa. A definition of palliative care is the 'provision of care for people with an illness for which there is no cure'. The philosophy is to relieve pain and manage symptoms so that the patient has as peaceful and pain free an end to his or her life as possible. This approach, which is becoming increasingly popular worldwide, aims to allow the patient and his/her family to have the best quality of life achievable with terminal illness. It is holistic in that it addresses not just the physical needs of the patient but also the social, spiritual and psychological needs as well. I have witnessed first hand the contribution that the Mildmay Centre and its training are making to the lives of patients and their families living with HIV in East Africa. As an outpatients tertiary referral centre and a regional training centre, the volume of patients is high and the demand for multidisciplinary services is continuous. Uganda, in spite of an improvement in transmission rates, continues to have a disproportionate number of people with HIV who are going on to develop AIDS and thus require specialist services.
Mildmay International, a Christian AIDS Palliative Care specialist Non-Governmental Organisation [NGO], has been providing outpatient services in Uganda since 1998. Based on a long history of specialist AIDS care service provision in the UK, and comprehensive research into the problem of AIDS in Africa, Mildmay was invited by the Ugandan government to provide a tertiary referral centre. The rationale for this approach to AIDS care in Africa is an attempt to relieve suffering and respond in a cost effective way to a disease that has become an everyday reality for Ugandan families. Palliative care can take place in resource-limited environments and can, in part, be carried out by families and friends if correct training is given. For this reason, palliative care in Africa is not only appropriate, but also cost-effective. Though in many cases, there is insufficient money in the household to buy even simple analgesics, a lot can be done providing that the 'caretakers' have a good understanding of basic palliative care.
Palliative care patients in Uganda have multiple needs. I found that the best way in which to identify these needs was to observe, listen and discuss with patients and their families . Clearly the needs felt to be important by the health care professionals may not always be the same as those that the patients themselves feel to be the greatest. However, through the assessment tools used at the Centre and the use of open questions one could establish what were the more obvious needs experienced by these patients and their families. In the majority of cases, the presenting need is for medical diagnosis and treatment. However, Mildmay seeks to provide a multi-disciplinary service by incorporating pastoral care and counselling, nutritional advice, physiotherapy, occupational therapy, children's rehabilitation and day care within its palliative care package. More often than not, patients have limited income and so it is often impossible to pay for medical treatment. There is therefore a clear need for low energy, intense income generation schemes, and clearly the need for a reduction in the cost of diagnostic tests and certain treatments.
Alongside these psychological and material needs, there are needs that are less visible. For example, the need for an old jajja (grandmother) to explain to the seven orphans for whom she is caring what has happened to their parents. The need for understanding from schools and head teachers when an HIV positive child still wants to attend school but is forced to miss certain classes due to sickness or doctor's appointments. The need for dying parents to explain to their children and prepare them as well as possible for the future. These needs are enormous and often intangible.
Holism in palliative care is vital, as patients do not only suffer from the physiological effects of their disease, but also from immeasurable stress and demands on their material and emotional resources. I observed all the components of multidisciplinary care for people attending the Centre, and actively engaged in psychological support through counselling as well as nursing duties and health education for patients and their families. I saw and heard of patients who had benefited greatly from this holistic approach. Alongside the counselling service, pastoral care and support is offered, because Mildmay recognises people's spiritual needs as important. Holism is also central to the care philosophy used for the HIV positive children attending day care at Mildmay. In what are often difficult and financially very limited families, with little opportunity for income generation and social support, the rehabilitation and care package provided by Mildmay is considered an invaluable contribution.
The care and support of families and others significant to the person with HIV, is a continuous and demanding task. Some patients return weekly for symptom and pain control, particularly when they reach end stage disease. The Mildmay Centre, along with many other missions and NGOs are making a valiant contribution towards relieving suffering in Uganda - but the task is enormous.
