In June, the World Health Organization (WHO) released a study showing that prevention and treatment for non-communicable diseases (NCDs) had been severely disrupted by the COVID-19 pandemic. Dr Tedros Adhanom Ghebreyesus, Director General of the WHO said, “Many people who need treatment for diseases like cancer, cardiovascular disease and diabetes have not been receiving the health services and medicines they need since the COVID-19 pandemic began.”
The Palliative Care Association of Uganda (PCAU) is working to ensure this is not the case in Uganda. It is estimated that at least 50% of the patients seen by hospice and palliative care organizations in Uganda present with a primary diagnosis of cancer. Others diagnoses include HIV/AIDS, diabetes, sickle cell anemia, chronic respiratory diseases, burns, and cirrhosis of the liver. Care for these conditions cannot pause during a pandemic.
The first case of COVID-19 was detected in Uganda in March and the government quickly implemented a country-wide lockdown. While this was important to slowing the spread of COVID-19, it created barriers for access to hospice and palliative care.
PCAU had anticipated some of the challenges and began planning in early March to address them. They worked with the government to help palliative care organizations acquire permits for patients and clinicians to access and offer care in homes during the lockdown. They knew providers would struggle acquiring personal protective equipment (PPE) and they began sourcing for funding to help their members purchase in bulk. PCAU members – hospice and palliative care organizations in Uganda – looked to PCAU for guidance and assistance with the continuation of their critical services.
Knowing the importance of PCAU’s leadership during an emergency like this, and their already shoestring budget, Center for Hospice Care (CHC) immediately responded with a grant to help with PCAU’s COVID-19 response. CHC has been partnered with PCAU through Global Partners in Care for more than 12 years. The partnership has received significant support from our community and only donations designated by the donor for partnership initiatives are used to support PCAU.
With the grant, PCAU developed an overarching strategy for responding to the COVID-19 pandemic with five focus areas:
1. TECHNOLOGY: Supporting continued operations of the PCAU staff working remotely.
2. ADVOCACY: Since the start of the pandemic, PCAU has advocated for integration of palliative care into the national COVID-19 response. This includes participation in the national pandemic committees.
3. CONTINUITY OF CARE: Palliative care as an essential health service was not initially recognized. Because of PCAU’s advocacy, the President of Uganda issued directives to District Health Officers to support palliative care and ensure hospice and palliative care organizations obtained travel waivers during the lockdown.
4. RESOURCE MOBILIZATION: COVID-19 has impacted donor funding for palliative care in Uganda. In addition, the country does not have a budget line item for palliative care. Hospices are in dire need of support. Most have scaled down operations, with some at below 50%. PCAU offered grants to member organizations for PPE, food relief, medicines and communication needs to help ensure minimal disruption in their services. They are also working on collaborative funding appeals to support palliative care services and have appealed to the government to support palliative care services through the National COVID-19 Fund.
5. TRAINING: The rapidly evolving COVID-19 situation necessitated an urgent need for continuous clinical education, especially for frontline health workers. With support of a Zoom license provided by Global Partners in Care, PCAU has hosted weekly virtual discussions with the palliative care fraternity to share knowledge and resources. PCAU has also worked with the Ministry of Health (MOH) to develop standard operating procedures for hospices during a pandemic.
CHC has worked with PCAU to strengthen their IT infrastructure – a move that has proven invaluable during the pandemic. PCAU has been well equipped for ‘work from home’ as each staff member has a donated refurbished laptop from CHC. Part of the financial grant was used to purchase communication data for PCAU staff.
It is evident people living with palliative care needs are some of the most affected by the pandemic. PCAU will continue working with the MOH and other partners to assure that people with palliative care needs are included in the COVID-19 preparedness/response activities.
Road to Hope Update
As conversations around COVID-19 increased, children on the Road to Hope (RTH) program worried about the disease. Since schools shut down in March, PCAU has stayed in touch with each child. An estimated 15 million children are currently staying home – including the 56 children on our Road to Hope (RTH) program. This comes with its own risks as children lose focus on school. For vulnerable children there are more serious concerns of domestic violence, sexual abuse and early pregnancy. Hunger is a major issue. Many of the RTH children come from impoverished households and their biggest struggle during the lockdown is access to food. As is sometimes the case in the US, families rely on children receiving nutritious meals from school. PCAU is helping find ways for them to access at least one meal a day while at home.
PCAU pivoted their focus to supporting the children at home and making sure they continue with their studies. The Ministry of Education and Sports publishes curriculum and lessons in local newspapers and on the radio and TV. PCAU’s community of volunteers help deliver learning materials to each child as well as food and basic needs for the RTH families. PCAU is also creating ways to engage the children further with additional books to read and identifying tutors in the communities where the children live.
During the lockdown, most RTH children are helping around the home and garden with chores. Some have also resumed their caregiving roles for sick parents or guardians. PCAU continues to help them balance these activities.
Meet the New PCAU Country Director
In November of 2019, Mark Donald Mwesiga was selected by the PCAU board as the new country director of the Palliative Care Association of Uganda (PCAU). Mark followed Rose Kiwanuka, the founding director of PCAU and a tireless advocate for palliative care access globally. Many of you have met or worked with Rose and you know these were hard shoes to fill. But Rose did an excellent job of mentoring Mark before her retirement.
Prior to leading PCAU, Mark spent nearly five years as the programs manager there. He worked closely with Rose to advance programs and learned the organization. This led to a smooth transition, especially with the partner organizations (including CHC) with whom PCAU collaborates. The RTH children know him well as he has been deeply involved with the program. Even in his new role, he is in frequent contact with the children, offering them guidance and support.
When Mark officially took the reins of PCAU earlier this year, COVID-19 was hardly on the radar – but it quickly turned into the focal point for nearly every aspect of PCAU’s work. During the pandemic, PCAU has stepped into a key leadership role. Mark has ensured that PCAU’s voice is heard; they have focused on ensuring palliative care services continue during the pandemic and have been included in national conversations and committees on managing the pandemic. This is in no small part due to Mark’s leadership and the wonderful team at PCAU.
Mark is currently finalizing his Master of Public Health degree at Uganda Martyrs University. He holds a Master of Management Science as well as a post-graduate diploma in human resources management and a degree in social sciences. He has various short course qualifications in project planning and management, drug policy, and diplomacy and public health from The Graduate Institute in Geneva. Having started his employment work as a volunteer with health programs at the rural Uganda community level, he appreciates the need for palliative care services to reach everyone in need and is inspired by the vision of PCAU.