When Palliative Care Association of Uganda (PCAU) first encountered Stephen Kasula, he was juggling school, caring for his terminally ill mother, while at the same time working to earn a living for them both.
As the main caregiver, he had to create time to take his mother to hospital, refill her medicine whenever necessary and to make sure she was cleaned.
Kasula’s struggles also included lack of money for basic needs such as food, fees, and over 22 killometres that constituted his daily commute to and from school.
Despite these challenge, which on their own can hinder school completion for the average person, Kasula was determined to make it in the medical field, so that he could serve patients like health workers in Bombo military hospital and Mulago hospital had done over a period of eight years for his mother.
Kasula who graduated with a bachelor’s degree in medicine and surgery from King Ceasar University on March 23, 2023, is now awaiting a decision on when the Ministry of Health will deploy interns before he can serve the year that will enable him become a certified doctor.
His dream, as voiced at his most recent graduation party is to one day become an oncologist surgeon, so that he can contribute to reducing the high mortality rate of cancer patients in Uganda. Oncology is important for Kasula, who has spent over a decade either living or working with cancer patients.
Erina Nanfuka, Kasula’s mother suffered cervical cancer before her death in 2013. Ms Nanfuka had tested and discovered she was HIV/Aids positive in 2004.
She started taking her anti-retroviral therapy (ARTs) and normally going about her business of selling sweet bananas and cassava in Bombo town and raising the son.
Then in 2008, she suffered tuberculosis, also known as Pott’s disease and later cancer of the cervix piled on making her helpless. At some point during the course of treatment for the Pott’s disease, Kasula, who was a student at Bombo army secondary school, and his mother Erina Nanfuka, decided it cost too much in both time and money to stay in hospital.
They decided together to go back home.
“I had seen health workers injecting my mother with medicine and I thought to myself that it looked like something I could do,” he says.
Kasula says once they went back home, he didn’t immediately try to inject his mother with the medicine, as he would go out and do odd jobs that included digging in people’s gardens to earn enough money to pay a nurse.
He, however, explains that he didn’t always have the money to pay a nurse since he had to combine working, caring for his mother who needed help to do even the most basic things like bathing or using the toilet.
Ms Nanfuka later suffered from cancer of the cervix making her even more dependent on her son, since it had always been the two of them for most of Kasula’s life.
His father and only brother had died within two years of each other in 1996 and 1998 respectively so it was up to Kasula to take his mother to hospital, get her treated, become her main caregiver, while at the same time remaining in school.
PCAU started by delivering medicine whenever Ms Nanfuka needed it in 2010. The delivery of medicine and neighbours chirping in to do chores like laundry reduced some of Kasula’s burden, allowing him to complete his secondary school education.
With secondary education done, Kasula was not sure what to do next, as he had not raised the points to make it for government sponsorship at tertiary institution level.
It is at this point in 2012, that PCAU started the Road to Hope project and then chose Kasula to become one of the pioneer beneficiaries.
PCAU working in partnership with the Center for Hospice Care (CHC) in the United States of America.
Road to Hope (RTH) supports children from financially poor backgrounds to access basic needs for their families and continue with education while caring for their chronically ill parents.
“Road to Hope is a program for childcare givers, who are facing similar challenges of looking after their parents or guardians who are sick,” explains Mark Mwesiga the current PCAU Executive Director.
Mr Mwesiga adds that the majority of these children later become orphans since most of the patients who receive palliative care and are therefore under the ambit of PCAU are often terminally ill.
PCAU has so far supported 64 children including Kasula who lost his mother, when he was at Kabale Institute of Health Sciences, Clinical Medicine and Community Health (KIHCMCH) studying to become a clinical officer.
The World Health Organisation has recognized palliative care as important for the global health, at a time when populations are aging in most parts of the world, but Mr Mwesiga says Uganda has a shortage of resources.
It is therefore often difficult for Palliative Care service providers to look beyond the provision of pain management services. But PCAU’s role is to help, their members deal with challenges that palliative care service providers face.
Road to Hope was born out of this this role and it is intended to reduce the number of children maturing before their time because of the burden of caring for terminally ill patients.
Rose Kiwanuka, one of Uganda’s pioneer palliative care health workers and PCAU’s former Executive Director, explains that she first got the idea of finding grants to pay schools fees and foster children with terminally ill parents when she met George Bazaire.
“We had gone to Kibale to follow up the healthcare workers we trained when we met George [Bazaire],” she says.
By her estimate, Bazaire who has now spent a good chunk of his life in Mrs Kiwanuka’s home was about four years when she first met him caring for his father.
Mrs Kiwanuka says Bazaire’s father had tuberculosis of the skin and it had eaten up to the tibia fibula making the bone visible.
Bazaire, who is now 20 years old and studying construction, lost his father when he was about six years. At the time of his father’s death, Bazaire was the only one in the house and it fell to that six year old to figure out what happened and to start informing neighbours.
Despite a hard beginning to his life, Bazaire comes off as a soft-spoken young man that says his greatest lesson over the years has been that PCAU, always reminded him to be kind.
Kindness is a feature that both Kasula and Bazaire share. In the case of Kasula, people who have encountered him in hospitals, clinics and hospices, all say he is kind and very helpful, despite working in Uganda’s health system that is often harsh and cynical.
Faridah Kembabazi, a patient whose children are benefiting from RTH is one of those that says Kasula turned her life around.
“I used to wish for death all the time, but I didn’t act on my thoughts because I had young children with no one to raise them,” says the single mother of four girls that is living with both HIV/Aids and cervical cancer.
Ms Kembabazi had been on what would have been her deathbed, when an organization offered to help support her family with necessities such as food and school fees for her children.
She says not enough money was reaching her, until she met Kasula, who was working at Rays of Hope hospice as a clinical officer.
With funding from PCAU, Kasula’s was coordinating Rays of Hope’s program to support patients like Kembabazi. Since then, PCAU has taken over management of RTH, all of Kembabazi’s four girls are in school and she now looks so health you would never tell she is living with a terminal illness.
Kephas Kato the Internal Security Officer for Kalagala Sub County in Luweero district also says Kasula’s willingness to help without asking for money or resorting to the rampant corruption that is rife in Uganda’s health system is a unique quality.
Kato encountered Kasula when he took his wife to give birth at Mulago Hospital’s maternity wing in Kawempe.
“My wife had spent days on a waiting list of those who had to get caesarean section when I met Kasula in the corridors,” says Kato.
Kato says Kasula helped in moving the wife to number three on the waiting list, which represented better odds, when it came to making it into surgery. As expected of many public hospitals in Uganda, the health workers were overwhelmed by the many arriving patients and in the end, Kato’s wife never made it for the cesarean section.
Kato considers his wife’s failure to make it for the cesarean section a blessing, as he went back to Kasula for more help.
Kasula, who was working at Kawempe as part of his training for the bachelor’s degree in medicine and surgery from King Ceasar University consulted doctors and supervisors before advising Kato to buy some medicine that would induce labour.
“By this point I had no money, so I came back home [to Luweero] sold a few assets, went back to pharmacies in Wandegeya and bought the medicine that made it possible for my wife to give birth naturally,” says Kato.
Kato, who comes Kagala Sub County, is one of many locals that appreciate Kasula coming from the same area. Similar appreciative stories about Kasula include treating old women in his village free of charge and offering simple acts of kindness like giving young children lifts on their way from school.
All this speaks, to the 30 year old, Kasula, beating the odds of hardship he encountered as a child to become someone that members of his community appreciate and with some suggesting he should be elected to represent his constituency in Parliament.
