By PcERC Team Members/ Julia Downing | Project Leader
On behalf of the Palliative Care Education and Research Consortium (PcERC), we are pleased to give you an update on our activities. Over the past four months, PcERC has continued to advance comprehensive palliative care for both adults and children, across Uganda. Working in close collaboration with Mulago and Kiruddu National Referral Hospitals, we’ve strengthened specialist services through established referral pathways. The unit is run by a dedicated team comprising six PCERC staff, three public service health workers, seven volunteers, and one Makerere University staff member who ensures smooth operations across both hospitals.
As a national center of excellence, PcERC delivered specialized, evidence-based care to 237 patients, including 25 children under 18. We supported 528 family caregivers to promote continuity of care, with 116 male and 121 female patients receiving services. Among them, 163 were diagnosed with malignant conditions and 74 with non-malignant conditions. Sadly, 50 patients passed away due to late presentation, but 164 were successfully discharged. Of those discharged, 33 were referred to hospices or local palliative care units, 17 to the Uganda Cancer Institute, and 62 with non-malignant conditions returned to their primary care clinics. Unfortunately, 52 patients were unable to access further care due to critical illness, financial limitations, or inadequate infrastructure. Despite these challenges, we recorded 9,117 physical contacts (21% increase from the previous period) and 4,134 telephone consultations, marking a 10% rise. These achievements reflect the tireless commitment of our clinical teams, who continue to provide symptom management, psychosocial guidance, and spiritual support daily.
In pediatric care, 25 children received services, and through our research partnership with the African Palliative Care Association, we utilised the Children’s Palliative Outcome Scale (CPOS) to assess needs and improve care quality. Fifty-four children were enrolled in the study, and 11 were identified as requiring targeted PcERC support. This collaboration has strengthened our ability to detect and address complex pediatric palliative care needs more effectively.
Furthermore, our mentorship model enabled link nurses and generalist providers to care for 420 patients within primary care settings. Of these, 112 were referred to PcERC for specialist support, although 17 sadly passed away before formal consultations could occur, often due to night-time or weekend limitations.
This reporting period has shown encouraging progress in clinical access, caregiver engagement, and pediatric care outcomes. We extend our heartfelt gratitude to GlobalGiving for their continued support, and to our teams at PcERC, Mulago, and Kiruddu Hospitals for their dedication to providing holistic, dignified care to those most in need.
Bringing hope to our patients is a day-to-day task; the pictures below shows some of the play therapy activities pictures one and two below.
Jemimah Social Worker Volunteer sharing experience with a child in the peadiatric oncology ward
ST was in severe pain and so I advised the mother to give a missed dose of morphine as his dose was overdue and I contacted the clinicians who came in for proper pain assessment and management. Once STs pain was controlled I went to talk further with the mother. She was so positive because I had consulted the team that helped with her child’s pain control. ST’s mother is a 36-year-old single mother of 4 children who had been separated from her husband for 6yrs. She is the bread winner and works as a casual laborer washing clothes and she moves from door to door looking for customers in order to sustain her family. Unfortunately she has lost many of her customers because of ST’s ill health and the situation became so difficult that she decided to take ST’s 3 siblings to their paternal grandparents so that she could continue taking care of ST. We stood with the family providing holistic care such as counselling sessions, providing information, social support, picking medications from the pharmacy, helping ST with school work, enrolling them for the comfort fund, supporting them with some investigations and connecting them to the hospital nutritionist, and spiritual care. We encouraged her to think strategically for any simple generating income that can support them such as weaving items (mats or buckets) to sell. The support provided helped to improves their wellbeing and the comfort fund assisted them in the buying diapers, passion fruits and milk.
STs mother said: "I feel like words can't express how much am grateful for the palliative care team, for the support you've always given me and my son. Ever since you came in our lives a lot has changed in me, I now have hope, and at least I can smile knowing there's a special team in Mulago that actually thinks about us and cares too.
Bernadette PC specialist at Kiruddu caring for JD
JD is a long-standing patient with End Stage Kidney Disease (ESKD) secondary to diabetes and hypertension. He is 32 years old and has been unwell for 3 years He had no attendant during his readmissions as his mother was caring for his younger siblings and they lived upcountry. He used to care for other patients in need, particularly those who were destitute and in the renal ward. Following cessation of dialysis he developed severe fluid overload and ketoacidosis, remained oxygen-dependent and he passed away in March 2025. He appreciated the care provided by the team and called the team members ‘mum’.
EDUCATION ACTIVITIES
We provide comprehensive training and mentorship programs for undergraduate and postgraduate students from various universities / institutions. For the past 4 months we received undergraduate students for placement from Makerere University, the Islamic University in Uganda, Kyambogo University and Mulago Nursing Training School. We promote knowledge transfer and enhance palliative care skills through clinical modelling and mentorship, ensuring participants develop necessary competencies for integrating and sustaining palliative care in their own setting. Training has been provided as follows:
RESEARCH
We continue to carry out research to ensure evidence-based practices and advocacy. Our research collaboration include the University of Coimbra, Oslo University, University of Sheffield, APCA and King‘s College London. We are participating in a pilot study of the PALL Digital Technology.
ADVOCACY AND SUSTAINABILITY
The palliative care unit continues to raise awareness about its services through information sharing and sensitization efforts.
CHALLENGES FACED BY THE UNIT
We hope you have enjoyed reading our update! If you have any questions or feedback, please do send us an email at info.pcerc@gmail.com
Best wishes,
The PcERC/MMPCU team.
By Florence | Project Participant
By Florence Nalutaya | Senior Nurse
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