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. Other 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 inMarch 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 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)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, thePresident of Uganda issued directives to DistrictHealth 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 NationalCOVID-19 Fund.
5. TRAINING: The rapidly evolving COVID-19situation 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, PCAUhas hosted weekly virtual discussions with the 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-19preparedness/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 56children 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.