Bringing Hope Through Palliative Care in Uganda

In the three months of October, November, and December 2023, our clinical team, including social worker volunteers have continued to provide care to our patients in both the Mulago National Referral Hospital and Kirrudu National Referral Hospital. We are grateful for your continued support that enables the team to provide care to these patients and their families.  

This time we are delighted to share a story from a carer giver as told by Ronald one of our volunteer social workers. Enjoy the read!

The Strongest People I Have Met Have Not Been Given an Easier Life 

She may be only twenty-five (25) years old, but her life has been far from easy. Sandra, our new friend and also a daughter of one of the patients we serve at PcERC, cares for her mother around the clock. Sandra’s mother was admitted to Mulago National Referral Hospital six months ago and now stays on ward 4B Haematology, right next to our 4B Hospital office.

We are grateful that Sandra is able to stay with her mother at the hospital; Sandra has done much to support her mother in terms of practical support, and as of today, her mother is in fair general condition.

However, Sandra is worried about the disease prognosis of her mother.

At PcERC, we provide holistic care for the patient and the family. It is common for a family member, such as Sandra, to stay with their hospitalised mother during their stay. Over these last few months, we noted that no other relative has come into the hospital to help. Sandra has been on her own with her mother.

As the team continues to spend time and care for the mother’s needs, we have increased psychosocial support to Sandra. One of the social worker volunteers, Ronald, shared his thoughts after talking with Sandra. “In my assessment I discovered that the family doesn't support the patient (mother),” Ronald told us. “Sandra left her job to stay in the hospital and nurse her mother who's is sick. Life is really hard on her side. She can't afford to pay money for investigations, purchase drugs that doctors prescribe for the patient, or even buy food to eat. This has affected Sandra greatly, giving her much stress.”

Ronald went on to share how PcERC has been able to reduce the burden on Sandra and her mother. Through generous partners and individuals in the “Patient Comfort Fund,” we have provided food for Sandra and her mother. To date, Ronald has been able to visit her twelve times, offer counselling and guidance around the hospital, and he has collected the prescriptions for the mother too. “Our palliative care team also provides spiritual support,” Ronald adds, and “she has appreciated prayers and reading the scriptures together.”

In the most recent visit, Sandra thanked the team and shared this: “Some days are better, some days are worse.  I can't tell you when, but I can promise you it will get better, it will get easier and it will all be worthwhile. Just promise me you won't give up on visiting and support us during this trying moment.”

Patient demographics

In this period, we have cared for 218 patients and different members of the team visited the patients 2,418 times. We also contacted them by phone, with 1,339 calls made during these months. Phone calls are especially needed to provide consultation and counselling for patients who are discharged, or to provide grief and bereavement support to the families of patients of those who have died as well as referral to another palliative care service in their home area.

The full patient demographics and outcomes can be seen in one of the pictures attached to this report. 

Educational activities 

Our experienced team has continued to train and mentor other health care workers from within the county and outside, from clinical clerkships with postgraduate doctors through our partner Makerere University. Our mission is to promote excellent and accessible palliative care services for all in Uganda and beyond. We continue to train both on the ward (clinical, hands-on practice) and through presentations and organised training sessions. 

In the last three months, we have trained and mentored the following categories of professionals:

• From late September to October, we hosted 4 paediatric medical interns from Makerere University.
• In October we hosted 4 medical students from King Ceaser University for 1 week as well as 7 medical students from the Islamic University In Uganda for 1 week.
• From October to November, we also hosted 6 intern doctors for 7 weeks and 4 family medicine doctors of Makerere University for 5 weeks.
• In the month of November, we also conducted a three-day Health Professionals training for 29 professionals within Mulago National Referral Hospital, which will be followed by one-on-one mentorship from our team of senior nurses for 1 year. The program is supported by Cairdeas IPCT and the Management of Mulago National Specialized hospital. 
• Finally, was lovely to host Dr. Cheryl  for 2 weeks and Dr. Oladayo for 1 month; the team learnt a lot from both and they had many lessons to takeback home. 

See our educational activities in pictures at the end of the report.  

Research activities 

We are pleased on work with the University of Coimbra – Portugal on a project titled EOLinPLACE -Choice of where we die, the PcERC team is involved in the supervision of a PhD student as well as support data collection for this project. 

There are several upcoming research projects which are undergoing the national Ethics Committees review. We hope to have more details for you next time once the research is approved.

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 team.