The Palliative Care Association of Uganda (PCAU) held its Annual General Meeting (AGM) last week ahead of its 25th anniversary celebrations.
This milestone event brought together key stakeholders, including Rays of Hope from Jinja, Hospice Uganda, St. Francis Hospital Nsambya, Cancer Advocacy Disability Group, Kamuli Mission Hospital, New Life Hospice Arua, Lweza Community Health Program, National Medical Stores, JCRC, MildMay, Uganda Cancer Institute, and PCAU Board Members.
Founded in 1999, PCAU is a membership organization committed to delivering palliative care services across Uganda. It works closely with the Ministry of Health and other relevant agencies to integrate palliative care into the national healthcare system. PCAU is located in Kitende along Entebbe Road.
In his opening remarks, PCAU’s Executive Director, Mark Donald Mwesiga, highlighted the organization’s five main objectives: building the capacity of palliative care service providers, advocating for a conducive environment for palliative care, mentorship, education, training, and effective governance. PCAU supports health workers at the village level, ensuring they have the necessary training and equipment to offer home care.
“We want to build capacity,” Mwesiga emphasized, noting that PCAU offers scholarships for diplomas, degrees, and Masters in palliative care. Over 80 scholarships have been awarded since 2019, despite challenges posed by COVID-19.
PCAU is also implementing the Pain-Free Hospital Initiative with the African Palliative Cancer Care Association and the American Cancer Society. This initiative has successfully integrated pain assessment into the triage process at six regional referral hospitals, treating pain as a vital sign and ensuring appropriate pain management.
The AGM also reviewed the progress of PCAU’s strategic plan launched in 2022. The organization has extended its reach to 1,400 health workers across nine facilities, recently expanding to Southwestern Uganda. PCAU has pursued accreditation to become a Continuous Professional Development (CPD) provider and has been certified by the Nurses and Midwives Council.
PCAU coordinates the supply chain for liquid morphine, crucial for managing pain in palliative care. Last year, 176 facilities received supplies, including Health Centre IVs, general hospitals, and regional referral hospitals.
Its strategic advocacy in 2023 focused on access to medicine and budget allocation. PCAU engaged with parliamentary committees on trade, budget, finance, and health, successfully influencing the Narcotic Drugs and Psychotropic Substances Control Act of 2023, which allows specially trained nurses and clinical officers to prescribe palliative care medications without legal hindrances.
The compassionate community program was highlighted, where children are involved in supporting palliative care work. This pilot program encourages young people to engage with older persons in their communities, providing support and companionship.
PCAU’s Road to Hope program has expanded, now supporting 85 children who are primary caregivers for their sick parents or guardians. This program provides essential support to these families, ensuring continuity of care. The Executive Director noted that at the Uganda Cancer Institute (UCI), 30% of children who initiate cancer treatment drop out, a phenomenon known as treatment abandonment.
PCAU’s commitment to research was showcased, with the announcement of the fifth Uganda Conference on Cancer to be held in September 2025. The conference report is published online, and PCAU has established a permanent website for the dissemination of scientific research.
Palliative care in Uganda faces significant challenges, including limited access to cancer care, inadequate training for healthcare workers, and insufficient funding. Community perspectives must be incorporated into healthcare systems, and specialization in palliative care is needed, particularly in rural areas. Resilience, patience, and collaboration are crucial to overcoming these challenges.
In closing, Mwesiga urged members to ensure accurate reporting from their facilities to support advocacy efforts. “We need to show the data when advocating at Parliament and the Ministry of Health. They want us to speak with evidence,” he stated.
PCAU’s work is well-publicized, with numerous articles highlighting its initiatives. Publications include a position paper on the narcotics law, a conference abstract book, and a detailed report on PCAU’s 25-year journey.
One of the notable speakers was Dr. Angela Namatovu, head of PCAU’s Cancer Navigation Initiative, whose program focuses on preventing treatment abandonment by children diagnosed with cancer. This initiative aims to support children and their families from diagnosis through treatment completion.
As PCAU continues to grow and evolve, its dedication to improving palliative care in Uganda remains steadfast, ensuring that patients receive compassionate and effective care across the country.