Dr Jack Turyahikayo completed a master's degree in palliative care supported by a scholarship from Cairdeas. In this blog, Jack shares how the training impacted his role as a doctor and continues to impact the lives of others through his work. If you would like to donate to support further training scholarships like Jack's, follow this link. 

Training as an internal medicine physician, I had high expectations of pursuing palliative care medicine as my career path. This vision still hangs in the balance due to the absence of palliative care positions among public institutions in Uganda. This situation is soon changing, following a commitment by the Ministry of Health to avail consultant positions in teaching public hospitals.

My master’s training in Makerere University, College of Health Sciences was quite eventful and academically intense but equipped me with the necessary knowledge, skill and attitude to provide impactful services. I reflect on this experience with gratitude and gladly appreciate Cairdeas for the scholarship provided for the master’s program.

My journey post-master’s training has been a humbling experience as I continue to improve care for patients with great palliative care need in Uganda and Africa.

I currently work as a part time physician providing palliative care services in the Mulago National Referral hospital and Kiruddu Hospital, an axillary facility currently mandated as a training hospital for both under- and post-graduate students of the College of Health Sciences, Makerere University. I participate in teaching and supervising students rotating in the palliative care service and mentoring future leaders in palliative care pursuing various levels of qualifications at the Institute of Hospice and Palliative Care in Africa (IHPCA). My hope is to improve capacity and build a critical mass of great leaders to place palliative care at higher levels in Africa.

Last year, I conducted a study in collaboration with a resident student from Stanford University. We looked at diagnostic and prognostic awareness among patients with advanced breast cancer and their family members. This study yielded key findings about this important subject which were presented at the APCA conference last month. Thoughtful insights were shared with interested partners and stake holder for future implementation. The APCA conference also provided the opportunity to engage, interact and network with distinguished researchers about future collaborations and partnerships with our palliative care service in Mulago.   

As a palliative care service, sustainability has been a big challenge in the last few months. Many services have scaled down or completely halted their services. For sustainability, we expanded our services to include 2 private facilities (Nakasero hospital and Aghakan clinic). I run a weekly outpatient clinic at Nakasero hospital but also attend to admitted patients that have palliative care needs referred to the clinic.  My colleague, Dr Namukwaya Elizabeth provides similar services at Aghakan clinic. Our expectation is that we can generate some resources that can help sustain the service for the many who cannot afford.

Huge challenges of sustainability still exist for several palliative care services in Uganda and Mulago/Makerere Palliative Care Unit is not exempt. We work very hard to provide palliative care to those in need and sincerely hope for potential collaborators, partners and donors to support this much needed care to several patients not only in Uganda but also Africa at large.

If you would like to support more scholarships like Jack's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list. 

Esther Nantongo Muyinga, is a Registered Nurse who was sponsored by Cairdeas to pursue a degree in palliative care at Makere University in Uganda. Esther had worked for many years on the wards but had never considered the need for patients to be cared for in a holistic way. In this blog, Esther shares what she learned from the course and how important palliative care is to the patients she cares for. 

I am so grateful to Cairdeas Trustees and Supporters for the scholarship which was gifted to me in my first year pursuing a Bachelor of Science in Palliative Care at the Institute of Hospice and Palliative Care in Africa. The course has helped me to understand the role of palliative care in improving the quality of life of patients with life threatening illness and their families.

Through the course I gained knowledge and skills which enabled me to assess and assess, diagnose and manage the pain and symptoms of patients. I learned to communicate effectively when sharing information with patients and their families, gained an understanding of the different medications that can be used to address symptoms, and also shared with my workmates the assessment and management of these patients so as to improve their quality of life.

There is a difference between palliative care and curative care. Although both involve caring for a patient, palliative care takes a much more holistic view of this care. It involves the family and support networks of patients and requires communication skills to share information with patients and their families whether that is good or bad situation. It also involves assessing the pain of a patient. Following the course, I am now able to take a comprehensive pain history and record the details in the patient’s pain assessment chart. 

As a result of this course, I have seen reduced stay of patients on the hospital wards after thorough assessment, as those who can benefit from the Home Based Care (HBC) are discharged and linked to HBC providers. The number of admissions has been reduced, because the patients have understood their diagnosis and management, and they understand when to come to the hospital and when to go to palliative care centers (Hospice).

Palliative care practice reduces the workload in the hospitals, saving money, time and resources.

A story of a patient that Esther has cared for...

Patient X was a 32-year-old female, married with two children. She had been unwell for 8 months with a complaint of right abdomen pain, which was treated as peptic ulcer disease (PUD) but with no relief. This later developed progressive abdominal distension associated with reduced appetite, weight loss and dyspepsia proceeding abdominal pain.

In October 2018, Laparotomy and Oophorectomy was done and a biopsy taken off. Histology results showed Krukenburg tumor. Following the results, she was initiated on chemotherapy in November 2018 and received seven (7) cycles with poor response. The tumors continued growing bigger and she became weaker and developed ascites.  Because of poor response, chemotherapy was deferred. Frequent paracentesis was done and also pleurocentesis done once. At first the primary care team thought that the primary was the ovary, but then later it was discovered that the primary was the pancreas.

Patient X is employed by a law firm as an office messenger but she has not been working for 6 months now, and is worried of losing her job. She is cared for by her mother who is a tailor by profession, though because of the added responsibility is also no longer working. Her husband is a self-employed IT worker. X complains that when her husband visits her in the hospital he spends most of his time on the computer rather than talking and caring for her.

When I visited patient X she looked a young lady, very sick with mouth sores and a distended abdomen. I was able to offer various medication to help treat her symptoms, including oral gel to relieve the mouth sores. I advised her carer to give patient X the type of food she would like but in small quantities and to avoid fried foods and sweetened and citrus based drinks. The patient, the mother and the husband were given clear explanations about the diagnosis and management, and the husband was told of the importance of his availability and care to the patient. 

We were able to discuss the financial burden with the patient and her family and linked them to the social worker for further support. She received continuous support through counselling. I was also able to pray with the patient and linked her with a spiritual leader for further spiritual support. 

Patients with life limiting illness have to face difficulties that go beyond the physical symptoms of their illness. Through my course I now understand how, as a nurse, I can help to relieve these stressors and manage the pain and symptoms of a patients - physical, psychosocial and spiritual. 

If you would like to support more scholarships like Ivan's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list. 

I am Toko Friday Santiago, the Volunteer Coordinator for the Palliative care Education and Research Consortium (PcERC) at Mulago Hospital, Uganda. 

I would like to thank Cairdeas Palliative Care Trust for giving me the opportunity to pursue a Bachelor’s Degree in Social work and Social Administration. Being able to excel with good grades without needing to do any retakes has been one of my greatest highlights and achievements since I began my studies. The course has been very interesting and encouraging to me in many ways. I have been able gain experience, improve my social work skills, and broaden my understanding and knowledge.

The course has also contributed to my development as a person through gaining analytical and practical skills and knowledge. This has helped me to make a difference in the lives of patients and their families at Mulago Hospital, especially those with life limiting illness.

Some of the challenges I have encountered include the expense of photocopying notes of all the lectures, and that transport keeps fluctuating during certain days especially during the rainy seasons.

However, since beginning my course I have built my confidence and assertiveness as a student leader in charge of the social work faculty. I also act as the Minister of Health within the Makere University Student Guild where I represent the students’ views and challenges and provide support during the class assessment presentations.

If you would like to support more scholarships like Ivan's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list.