Why is research a priority for the Palliative Care Unit at Makerere? You may think we should be focusing on looking after patients and training students. However much needs to be done to ensure we are making a difference. We need to examine the process and determine the needs and priorities.We must listen to the patients and family perspective and find ways that support quality of life yet can be sustainable and accessible. We need to help build credibility among health policy makers and clinicians. It was with great pleasure that we welcomed Prof Scott (Primary Palliative Care at the University of Edinburgh) and Mary MurrAy on an expert visit. They encouraged us in many ways and helped to launch our Palliative Care Research Network at Makerere. We were delighted by the response from the university, ministry of health other colleagues and students. Scott and Mary also managed quick visit to Jinja and the mighty Bujagali falls. Here are some reflections from Scott; 'My wife Mary, a GP with a special interest in palliative care, and I recently had the privilege of spending a week with Mhoira in Uganda supporting the developing palliative care work. We spent time with the Mulago Hospital palliative care team on ward rounds, when they assess various patients to improve their pain symptom control and offer emotional support. The patients who receive this care are universally very appreciative. I spoke at a large hospital medical meeting to highlight the potential of this great new service, and highlighted this is an approach which is well accepted internationally.
At the university Mhoira introduced us to the Dean and various other key leaders in developing palliative care as a specialty. We held the inaugural meeting of the University Palliative Care Research Network, and leaders from Hospice Uganda and APCA attended to draft up a research agenda for the coming years. I also helped Mhoira and her colleagues run a workshop in research methods in which local doctors and nursed identified a number of projects to take forward, some with national and international collaborations. The University is very keen to establish a strong research base.
Finally we visited Kitovu Mobile Home Care Programme to conduct an evaluation of the palliative care services there for the Diana, Princess of Wales memorial fund. That dedicated team offer oral morphine to control pain, which gives unspeakable relief to many suffering from cancer and AIDS. They also give food, counselling and spiritual support that many may live as well as possible despite their progressive illnesses.' These visits were down bumpy, dusty roads for many miles across 3 ditricts and are the only way people receive palliative care at home. Here is Richard sitting in his simple home which was rebuilt after a storm. He is no longer working as a policeman but still tries to offer some income support while his young family attend to the farming.
What a difference it makes when we have services like Kitovu mobile to refer to when going home from Mulago. It is so hard for the team when we cannot offer a patient a realistic hope of receiving care at home - sadly still the case in many parts of Uganda.