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  • After completing her Bachelor of Science in Nursing (BScN) at AKU-SONAM, Rose Kiwanuka established the Palliative Care Association of Uganda. Today, out of the 112 districts in Uganda, more than 95 have palliative care centres.
Rose Kiwanuka: A trailblazer for palliative care in Uganda

Rose Kiwanuka was very enthusiastic when she enrolled at Nsambya School of Nursing. It had been a long time coming, since primary school, where she had first taken an interest in people’s well-being as Health Prefect. Three months into her course at Nsambya, she and her fellow students were taken into hospital wards to begin their practice on simple procedures such as checking patients’ temperature, weight and blood pressure.

“One of my most traumatising experiences when I began was when they made me observe a dying patient, who was gasping for breath. I was in such great panic that I ended up fleeing the room. A senior nurse followed me and advised me to be strong,” Rose recounts. Despite the shaky start, she was determined to be a nurse. In fact, that experience would inform her decision to go into palliative care six years later.

“One of the major challenges as a nurse was my inability to prescribe drugs. Patients would keep asking for painkillers, yet my hands were tied.” At the time, no training institution in Uganda had palliative care in its curriculum, so Rose went to Oxford, Sunderland and the Netherlands to train as a palliative care nurse. She was the first Registered Palliative Care Nurse in Uganda.

In 2013, Rose enrolled for a Bachelor of Science in Nursing (BScN) at the Aga Khan University School of Nursing and Midwifery, East Africa (AKU-SONAM EA). She graduated in 2015, fully equipped with leadership skills and confidence. “I needed to attain that degree to feel competent enough to interact with the Ministry of Health officials and district health officials about pushing the palliative care agenda. For palliative care to grow, I needed to go out and advocate for it at different levels to ensure that its awareness continuously spread throughout Uganda.”

Armed with nothing but faith, Rose moved to the Palliative Care Association of Uganda – an organisation she founded while still employed. It had a few members, but no employee or office. “I was the sweeper, administrative assistant, accountant and country director. I was passionate about palliative care, so I kept writing the reports with the skills I gained from AKU. Those reports attracted donors. Today, the association has its own campus, with offices and 15 employees.”

“During trainings, I would sensitise nurses to the fact that diseases like cancer were everywhere. Little did I know that it would hit me closer than I could have imagined.” Rose was diagnosed with colon cancer in 2017. “I was in disbelief. I could not imagine that I – a person who had been supporting vulnerable patients – was now a cancer patient.”

It was a lot to take in, but Rose believes everything happens for a reason. She is glad that she made the investment in growing palliative care in Uganda, and now benefits from the effort. “Although I was initially shocked, I’m glad to say that I have not faced any physical pain. I have the right medication and people available to prescribe and administer it. Moreover, I have not had to endure any psychological stress, thanks to the people who have been there to comfort me. This is what I had been working towards.”

Out of the 112 districts in Uganda, more than 95 have palliative care centres. Globally, Uganda is the only country where nurses are allowed to prescribe morphine to terminally ill patients, free of charge. Rose’s achievements had her invited to a UN meeting to testify on the best practices and successes of these milestones. “I must triumph over this cancer. At least now, I will be speaking from personal experience when I go to the field. There is still a lot of work to be done, and I will be there to lead my team to success.”

This story first appeared in a collection of photographic essays published by the Aga Khan University Nurses and Midwives - Leaders in Healthcare in East Africa.