Covid-19 Bringing Hope Through Palliative Care

We are delighted to share with you our second report this year, we thank all our supporters from Uganda and around the globe. The year is progressing well with our services including patient care for patients and families, teaching other professionals and hosting colleagues from other institutions and countries for placements and sharing our research. The country has now embraced COVID-19 as the team continues to protect itself and the patients by using masks and social distancing. 

Please enjoy reading our updates for this period of April to June 2023 below. 

Patient care 

Patient and family care remain the centre of our service, the medical team alongside our volunteers have cared for 121 patients both on the Mulago and Kiruddu hospital sites, with 1,163 physical reviews and 902 telephone calls to provide ongoing support after discharge or bereavement to the grieving families. 

We are grateful for your continued support towards, masks, sanitizers, food and nutrition support, soap and some medicines and investigations to the patients which make a difference in the quality of their lives while in hospital. 

Please see below for charts on the patient demographics from April to June 2023.

Jackie’s story, as told to and written by Teddy 

“Diagnosing me with advanced lung disease has been the worst experience in my life.” Teddy, one of our social worker volunteers in Kiruddu Hospital shares this from a patient named Jackie* who has been hospitalised for more than two years and is now oxygen dependent. Jackie is 27 years old, comes from Western Uganda and has an eight-year-old daughter (in school, thanks to sponsorship from a teacher) as well as her sister who takes care of her.

She narrated her story about the day she was diagnosed with lung disease. She says this affected her badly and she remembered episodes of panic attacks as well as depression. She counted herself as a goner – a lost cause – and did not have any desire to stay alive.

However, after Jackie was introduced to our palliative care team, she reports feeling more “at home” at the hospital and less depressed. She even said that she has no worries at all: “I have got a special team to help me and to check on me on a daily basis … it’s to the extent of that I even forget that I am an orphan.”

Jackie says that she prays that God will strengthen and reward the palliative care team. She also prays and wishes that all the other patients on her ward could be cared for by palliative care team, because, as Teddy explained, she sees that the other patients are missing out on a lot. In addition to regular visits and reviews for pain and symptom control, the team brings her a more concentrated form of oral morphine, which is not always available in the hospital.

Teddy, pictured below, shares that Jackie’s response and prayers encourages her to continue serving with our palliative care unit. And we thank Teddy—and the rest of the team in both Kiruddu and Mulago Hospitals—for their continued efforts in administration, clinical and social work, education, administration, and advocacy to promote palliative care for all.

*Jackie is not the real name of the patient; name changed for privacy reasons.

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. 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; 

• We have hosted 11 undergraduate students from Makerere University for a 1 week’s rotation in the palliative care unit. 
• We have also hosted 19 nursing students from the Mulago Nursing school between April-May for their hands on practical experience following their classroom lectures. 
• In April-May we  hosted 18 medical undergraduate students from the Islamic University in Uganda for their Palliative care placement, this included both lectures and hands on experience with the patients on the wards. 
• Through our international collaborations we have also been privileged to host 2 international students from the University of California and Tulane University (both in the USA) each on a 4-week rotation in palliative care. 
• In the month of June, we completed the final session of Health Workers Palliative Care training at Kiruddu hospital for 15 professionals and was facilitated by the PcERC team with funding from Cairdeas International Palliative Care Trust (Cairdeas IPCT),and the training will be followed by hands on experience for all participants working alongside our specialist team. 

We are also providing ongoing mentorship and support for 16 trainees on the Uganda Children’s Palliative Care Nurses Leadership Fellowship Programme (UCPCNLFP) that we are currently running in conjunction with the International Children’s Palliative Care Network (ICPCN) and University of Edinburgh with funding from the Burdett Trust for Nursing. 

On the 13^th September we will be holding a Pre-conference workshop as part of the 4^th Uganda Conference on Cancer care for the 16 participants. 

Research and Conference activities

We have had 5 abstracts from our work accepted for presentation at the 4^th Uganda Conference on Cancer and Palliative Care conference, due to take place 14^th-15^th September in Kampala - the team is very much looking forward to being part of this conference. 

The abstracts include; 

1. Uganda Children’s Palliative Care Nurse Leadership Fellowship Programme
2. The lived experiences of people with serious chronic illness among the refugee and host communities of Obongi districts
3. Telling our story; experience of living with a chronic illness; community generated data using Photovoice in Adjumani and Obongi districts 
4. Mobile technologies for palliative cancer care in Uganda: Qualitative secondary analysis of health professional perspectives 
5. Understanding VHTs experiences of providing palliative care and offering mentorship to other VHTs to provide Palliative Care in refugee and host communities of Obongi and Adjumani districts.

We look forward to sharing at this conference.  Please look out for highlights from the conference in our next updates report. 

Fundraising activities

We continue to put in place strategies to raise funds in support of our activities and have recently partnered with a Charity Organisation “The laughing tribe” who support charities through comedy and so we will work with them for any fundraising initiatives that they may have locally.  

We hope you have enjoyed our update! If you have any questions or feedback, please do email us at info.pcerc@gmail.com  and we will be very pleased to engage with you. 

Best wishes from the  PcERC team.