The ibis, cloaked in his dark, feathery coat, struts across the lawn behind the Naggalama Hospital guest house, challenging me with his black eyes and scythe-shaped beak, reminding me of the illustration of a medieval plague doctor that hangs in my office. With the distant groan of rainy season thunder, he flaps his way to the shelter of a nearby tree as I sit here watching the downpour and reflecting on our current travels which will soon come to a close. After a year-long pause due to Covid travel restrictions, this is our second trip in 4 months back to Africa.
I haven’t written in quite some time, my pen quelled by Covid even though our work in Uganda has continued. Long overdue, it is time to let you know how we weathered the pandemic storm and where our organization is headed. Coming into our 10th year of work, we have accomplished so much of what we initially set out to do, but as time has passed, our mission has taken on more breadth as needs came into focus.
Palliative Care for Uganda, Inc., (PCFU) the organization we started nine years ago to support palliative care services in an under-resourced area of rural Uganda has grown from a small NGO intended to help a 3-person team of Ugandan healthcare workers at a 100-bed hospital into an organization supporting programs that are poised to be used throughout Africa and even in countries in the Middle East, Far East, Europe, and North America.
Palliative care (PC) is a medical specialty whose focus is to reduce suffering in patients with life-changing and life-limiting illnesses and aims to improve the quality of life of patients stressed and distressed by the symptoms of their illness and the medical treatments they may be undergoing. Given the medical, pharmacologic, psychological, spiritual, and socioeconomic aspects of palliative care, mastering the skills to deliver quality palliative care requires specialized education. Not surprisingly, there are not enough doctors and nurses who have been properly trained to provide palliative care to suffering patients, especially in the developing world.
In Uganda, only 11% of those who require palliative care have access to it. When we first started PCFU, our mission was to help Naggalama Hospital in rural Uganda to build a self-sustaining Palliative Care program with one palliative care trained nurse and 2 assistant nurses to serve a single district of 300,000 people.
Along the way, there have been many challenges, especially during Covid when the president of Uganda put the country into lockdown, prohibiting vehicular travel, closing all schools and many businesses for almost 2 full years. The economy crashed, healthcare and consequently health suffered. Poverty, as abject as it was prior to the pandemic, became even more pervasive. Yet the Naggalama PC team made adjustments to their routines in order to continue to serve those in dire need despite many threats and obstacles. Over the years, this little PC Team has cared for well over 400 patients who would otherwise not have access to this essential care.
The Naggalama PC team is now recognized by many palliative care organizations. as a model for sustainable delivery of palliative care in rural Africa. The team leader, Prossy Nafula BSN, DPC is now consulted by others for her expertise in rural palliative care program development in order to help other organizations start their own PC programs in under-resourced areas.
Just this week, The St. Francis Naggalama Palliative Care program was recognized at the 7th International African Palliative Care Conference for “Contribution to Improving Access to Palliative Care Services in Africa”, this little hospital in rural Africa sharing the honor with other awardees that included large national and international service organizations.
While the pandemic raged, and we were unable to travel to Africa, PCFU, aware of the need for more trained providers of PC, used the time to develop with a documentary filmmaker a video based educational curriculum to help train more healthcare workers in skills needed to provide PC to other rural areas, not just in the Mukono district where Naggalama Hospital is situated. We forged partnerships with other African based PC organizations, to help disseminate the curriculum not only to educational institutions in Uganda, but to other countries in Africa, free of charge. Randi, PCFU’s medical director, has recently been appointed Visiting Faculty at the Institute of Hospice and Palliative Care, the educational arm of Hospice Africa Uganda, the major source of PC education across Africa to help train PC educators in the use of our video-based curriculum. Additionally, in an effort to expand PC education through digital modalities, a necessity in the age of Covid, PCFU has been engaged to provide educational content for monthly webinars through the African Palliative Care Association to countries throughout Africa and the world, all free of charge.
As you can see, as PCFU approaches its 2nd decade, our mission has significantly expanded.
We have grown from a local organization serving a small community hospital to a developer of educational program providing content for PC education internationally. Moving forward, the core of PCFU’s efforts will encompass further development of PC educational curricula, and efforts to broaden distribution through partnerships with larger PC institutions including Hospice Africa Uganda, Palliative Care Association of Uganda, and the African Palliative Care Association. Self-sustainability of programs is paramount to their design.
There is no cost to users of our programs. All that PCFU does, both patient care and education, is totally donor supported, with every dollar going to patient care and educational programming. Administrative costs are covered entirely by our voluntary board of directors. Thank you to all of our past and future supporters; you are what makes all this happen.
As we emerge from the pandemic and move into the future, we continue to actively explore and develop new ideas to further enhance access to palliative care in Africa:
- A formal Global Health Palliative Care track within a US medical school to train US physicians, nurses, social workers and chaplains, philanthropically supported.
- A Stroke and Spinal Cord Injury Rehabilitation Program at Naggalama Hospital in Uganda
- An Inpatient Hospice and PC unit at Naggalama Hospital, something relatively unheard of in Africa, accepting referrals from other hospitals and districts.
- Tuition Support for PC education for more nurses and doctors to become certified specialists in PC.
- Development of technology-based learning modalities that work better in rural areas.
- Expansion of the Naggalama PC team’s reach to a wider geographic area due to great demand.
- Support for bringing Ugandan physicians and nurses to the US to learn from their PC colleagues in the US and broaden our understanding of palliative care needs in the developing world.
Finally, with all of these changes, we realize it is time to rebrand PCFU to reflect its broader purpose. Within the coming year we will announce when the new name Palliative Care and Education, Uganda Inc. (PC&ED Uganda) comes into effect. While we will never neglect our initial task to help relieve the suffering of individuals, we aim to fulfill our expanded mission to train more healthcare workers in the community to provide PC services to more people who are suffering.
As the storm passes and the sun comes out, the ibis lands softly back on the lawn and looks at me as if to say “I see we are both still here.”
Howard and Randi