Regional News - Uganda
“Completing the Circle of Care”
Palliative care conference
Jinja, Uganda, August 2005.
by Anne Merriman and J Jagwe.
Note: Because of space limitations, this is a shortened version of the summary provided to us by Merriman and Jagwe.
This was the second biennial conference for the Palliative Care Association of Uganda (PCAU) and a fitting occasion for the conference with the sewing of the seeds for Hospice Jinja. Over 260 delegates attended this three day conference - all from Uganda.
Dr Amandua, commissioner for Health Services, represented the Minister of Health (MOH). The speech reiterated the support for Palliative care services in Uganda and its incorporation into the five year plan commencing this year.
The Keynote address, by Faith Mwangi Powell, Executive Director of African Palliative Care Association (APCA), on “Palliative Care in a Changing Environment” set the scene for the conference, relating how care had been set aside in favour of cure at the advent of antibiotics, and how that care could be pushed aside in the era of antiretroviral agents (ARVs) and reminding us that Palliative Care and ARVs must move side by side and hand in hand.
Hospice Jinja is a new venture that is still in utero. It has trained personnel to give appropriate care and the finances to support them are not yet in place. However the premises have been supplied by the DDHS next to the DDHS’s office and we are extremely grateful for this – a ribbon cutting was held.
At the opening of the conference the concept of palliative care was clearly defined. Definitions are now becoming more important as organisations seek a share in the cake being given by palliative care by donors.
Our own Uganda experience, although recognised as a leader in Africa , is far from universal in our country. Many patients still live and die in pain. Our efforts need to be streamlined to reach the poorest, those who still cannot reach a health worker for whatever reason must be reached with this form of care.
It was recognised that the extent of the demand for palliative care in Uganda is on the increase. Those who are trained to carry out palliative care may be constrained by lack of time and resources to give their patients and families the service they have been trained to give. Also many who are trained are still left to fulfill their fulltime posts in the health service and PC is seen as something that can be done in addition. The need for time for each patient, training of others in the Districts and advocacy, is asked of our trainees and was brought to the fore.
The increased recognition of the need for pain and symptom control to complete the circle of care, from the HIV/AIDS sector and the AIDS commission in particular, gives great hope for the increased grafting of palliative care, onto support groups for HIV/AIDS.
The effective delivery of a palliative care programme cannot be achieved without support from the Government and other interested partners. However, a review of the Government health care system in Uganda which started with a statement of the size of the budget (set at $13.4 per person per year), the cost per week for the care of a patient being cared for by the HAU (Hospice Africa Uganda) team, together with the telling statistic that over 50% of the population never see a health professional, gave a stark indication of the severe financial limitations which are imposed on any new initiative. The most urgent priority of the Health Ministry is the burden of infections diseases including TB and Malaria, often linked to HIV. Nevertheless the importance of government support for palliative care was stressed. This has been taken up by the Government of Uganda particularly be increasing prescribers and by allowing the nurses and clinical officers trained in palliative care to prescribe morphine as well as carry the torch for PC in their Districts. The importance of training through the centres of excellence in Uganda such as HAU and Mildmay was again stressed, and the responsibility of these institutions to increase capacity for training and adapt training to country needs was again stressed. The use of specially trained and qualified palliative care nurses can be seen as an important step in broadening provision of pain and symptom control.
HAU and other lobbyists can take considerable satisfaction with knowing that palliative care is now formally recognised by government and is part of the current and next 5 year health plan.
The role of oral morphine as a key factor in pain relief was emphasised many times. It was stressed that oral morphine is not addictive, despite the opinion of some senior figures in the medical profession and elsewhere and the importance of establishing sound clinical practice based on evidence was reiterated. The advantages of oral morphine - low cost and easy availability, ease of formulation and dispensing, simplicity of use (including the ability to supply sufficient for a reasonable period time thus allowing home care) - were all described and the process of sensitisation of the key decision makers to its benefits was also discussed. In Uganda 21 of the 56 districts have now received sensitisation, and are subject to the vagaries of supply - oral morphine is available in each of them.
The role of ARVs in changing the life expectancy for individuals and in the country was discussed. However there are many other problems arising which may need palliative care during the course of ARV therapy. The problem arose that the supply of affordable ARVs might stop after the BIG donors withdraw their funding. Dr Amandua assured us that the Government was making provision for this. Meanwhile PC providers need to be aware of the different presentations to PC and the interactions of drugs that can occur when a patient is on ARVs.
As the need for palliative care is more recognised, the need for education and training of the providers in PC is recognised. Yet the places for training are few. The training incorporates clinical skills, special forms of caring, training of others and advocacy. A plea to the MOH was made that at least one person in each District would be dedicated full time to PC while training continues and that later generic carers can incorporate PC into their programmes reaching all.
As the conference drew to a close, its success could easily be recognised. Delegates from Districts all over Uganda came to show that PC is alive and well and moving slowly, but surely, through to Districts, through to community volunteers, and through to the poorest in the villages.
The conference atmosphere was one of mutual support and the importance of sharing experiences was emphasized many times. The opportunity to exchange ideas and particularly to publicise what was happening through the Palliative Care Association of Uganda and the newly formed African Palliative Care Association were constantly reiterated.
It rapidly became apparent that not only was there no competition between the various groups, but also there was a genuine wish to cooperate. Uganda is a wonderful country for beauty (Jinja) and love and caring!!
by Anne Merriman and J Jagwe.