Covid-19 Bringing Hope Through Palliative Care

This being our very first report in the new year, we wish to say a happy new year to 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. We have also now survived the Ebola outbreak and the country is now declared free from the epidemic. We hope you enjoy reading our updates from the last months (January to March) below. 

Patient care 

Patient and family care remain the centre of our service, the medical team alongside our volunteers have cared for 108 patients both on the Mulago and Kiruddu hospital sites, with 856 physical reviews and 581 telephone calls to provide ongoing support after discharge or bereavement to the grieving families. 

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

Patient story: Life after COVID-19, as told to the palliative care team (written by the patient).

I am a female Ugandan, 33 years old, and you can call me “P.” My health issues began in 2017 as a severe cough, while I was working overseas as a housekeeper in Dubai. I was treated for tuberculosis (TB), but I never fully recovered. Finally, in 2020, the Mulago Lung Institute found that I have COVID Stage IV, and they managed my symptoms better so I was still able to work.   

My health worsened in 2021 during my pregnancy: I developed asthmatic painful conditions, terrible pneumonia, very severe post covid symptoms, and pulmonary hypertension. In the past two years I have been hospitalized nine times and have become oxygen dependent. 

My main problem is that I experience shortness of breath during any activity. But it is difficult to stay at home because oxygen refilling is expensive, and I cannot afford it. I am not working currently and no longer have financial support from family, so this is how I joined this palliative care unit for assistance with daily needs. 

The burden goes further than my physical health and finances. My illnesses have cost me loss of relationship (with my children’s fathers) and while in the hospital, I am far from my children. To my family I felt like I have become a curse or a bad omen. I do have good friends though: I have been assisted socially and financially by the palliative care team, which has given me some relief. I am feeling hopeful now since my health is in the right hands of this family, the hospital-based palliative care unit. I realized also that I feel better when supplementing my medication with vitamins. However, these immunity boosters and food supplements are expensive and difficult to buy. 

It feels bad to be in the hospital without my children, I therefore call on assistance from the management at the hospital or with the palliative care unit to help financially unstable patients with oxygen concentrators at home or oxygen cylinders refilling and transport charges. 

Otherwise, I am so thankful for the services rendered to us by the palliative care team.  Thank you so much for understanding what patients like me go through during such sickness, and for holding their hand for assistance. Life still continues after COVID-19, but I am weak and still require working to earn a living which is so hard with this breathlessness. I request skill building lessons from home to assist patients earn some income. 

Conclusively, may God heal all patients and provide necessities in all aspects of life. May God still use good people to fund the organisation so that patients can smile. 

Educational activities 

Our training and education section has been quite busy in this period with lots of training activities, we have continued our partnership with Makerere University to provide training.

We have hosted 5 intern doctors on a 2-week rotation each in the Palliative Care Unit, 16 participants on the Palliative Care Initiators course of Hospice Africa Uganda who are from the Francophone countries for a 1-day placement, 3 international visiting doctors attached to Naggalama hospital to see our work for 1 day, 15 students on the BSc Palliative Care of Hospice Africa Uganda -Institute of Hospice and Palliative care, 7 undergraduate students each week for 5 weeks on their rotation in the Palliative care unit. We also completed a 1-day refresher training in Paediatric PC for our hospital volunteers supported by funding from our friends at Uganda Cancer Trust UK (UCT-UK). 

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

Below we share some quotes from the medical  students who rotate through our Unit.  

“Prior to my rotation in Palliative care Unit Mulago, I had a lot of misconceptions about Palliative care. I have learnt a lot and enjoyed the fact that it is holistic medicine that looks at the whole patient, there is a lot of empathy involved which is not like other spheres of medicine that only look at the clinical aspect of the disease. Special thanks to the Doctors and Senior House Officers (SHOs) and interns who sacrificed time to teach us and YES  I have left a better doctor” Andrea, Medical student, IUIU

Rotating in palliative care has taught me that each and every patient as a whole deserves maximum dignity regardless of who they are and where they come from.  I have learnt to inform patients fully of their condition and diagnosis by communicating exclusively with these patients, I am glad I met all the health workers in this rotation since I have learnt from each one of them”.  Amelia, Medical student 

Research and Conference activities

We were honoured to participate at Indian Association of Palliative Care Conference (IAPCON), we had representation from 3 of our team including Dr. Mhoira, Prof. Julia and Dr. Peace together with other partners from India.

Fundraising activities 

We are excited to have participated in the GlobalGiving “Little by Little campaign” and thank all our friends who supported the project. Locally we are also approaching individuals and corporate companies to support our work to the services that we give to the community can continue. 

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

PcERC team.