The suffering and distress among chronically ill patients in most African rural areas is intense as they often have limited access to good health care systems and treatment. In most places palliative care is also simply not available. With little or no help, patients are faced with untold pain and suffering, usually worsened by the abject poverty that they face. In many cases, costs related to treatment take priority over all other family expenditure, leading to increased poverty, thereby compounding the suffering. The 3 districts (Buyende, Namayingo and Bugiri) where Rays of Hope has recently expanded its operations are no exception to these challenges.
Through the True Colours Trust Small Grants Programme administered by the African Palliative Care Association, Rays of Hope Hospice Jinja received a small grant to scale up its palliative care services to these 3 previously unreached rural districts from May 2017.
Upon entry into this area, Rays of Hope witnessed that though poverty in Busoga region is harsh, it reaches a new low in this area. The levels of vulnerability of patients and their families is high, and probably worsened by consecutive dry seasons that affect harvests. Access to palliative care services was therefore received as a lifeline and source of hope for patients faced with life limiting illnesses and their families.
During this 12-month project, a total of 88 community volunteer health workers for the districts of Bugiri (32) Buyende (33) and Namayingo (23) underwent basic palliative care training to equip them with basic information about Hospice Jinja, chronic illnesses and the role of community health workers in identification, referral and support for patients with life-threatening and life-limiting conditions in their communities.
A further 198 health workers from the 3 main health facilities and hospitals received Continuous Medical Education (CME) for palliative care which aimed to improve the referral pathways for patients with palliative care needs to Hospice Jinja.
Throughout the project period, radio spot messages were run on the local community radio stations in each of the districts, (Busoga 1 Radio, Basoga Broadcasting and Nabeta Broadcasting Services). They aired twice a day at prime time and mid-morning shows in English and the local languages. This created widespread awareness that led to a rise in the number of patients seen both at the hospice and at hospitals for palliative care services from 700 to more than 1000 patients in the 12 months of the project.
Part of the small grant was used to conduct palliative care sensitisation meetings with 28 religious leaders drawn from the Anglican, Catholic, Orthodox and Islam faiths, and also with 20 district, local government, media houses, Hospitals Management officials.
Information, Education and Communication (IEC) materials including staff T-shirts, 500 fliers for religious leaders, 700 fliers for health workers and 3,000 brochures were printed and distributed and all participants committed to disseminate information and refer patients. Community awareness activities were conducted at 10 selected outreach centres every 2 weeks by the trained community health volunteers.
Home based care program
The grant also enabled Rays of Hope Hospice Jinja to establish a home-based care program for the three districts through which a team of clinicians visited patients twice every month, and ensuring that 257 adults and 37 children received palliative care in the 12 months. Of these 229 received pain and symptom medicines.
The long distance between the hospice and the districts as well as low levels of awareness about the hospice services presented a challenge. Rays of Hope Hospice Jinja partnered with Uganda Bikers to help spread the message in the communities.
Key lessons learnt were that;
- It is possible to provide palliative care and pain relief to patients with life limiting illnesses in the rural areas through the engagement of all community structures, and with a small amount of funding. However, running rural based palliative care programs can be costly as it requires 4×4 vehicles, high fuel and staff costs.
- Though many chronically ill people were facing serious pain and were in deep suffering, they often had other limitations hindering them from seeking for palliative care. Poverty, ignorance and distances to health facilities are among the key limitations to accessing palliative care services.
- Late detection compounds palliative care needs, particularly for cancers that could be treated. Palliative care needs in the rural area are huge and far beyond the physical pain, and further compounded by poor health care systems.
- Apart from pain medication, the need for social support for patients and their families is equally great.
This project has had significant impact on the lives of many patients in the rural districts in Uganda, as one of the beneficiaries shared;
Baisi is 45 years old and has cancer of the cervix. She is a farmer, and she has seven children between 30 and 4 years. “For a long time I was in much pain and distress and had no access to relief. I was so happy to receive the medicines that have taken away most of my pain and the foul smell, and I also appreciate the food assistance as I was struggling to stay well-nourished.”
Rays of Hope Hospice Jinja palliative care teams deliver hope and aim to keep the patients as comfortable as possible; easing pain, reducing suffering and helping patients live with comfort, dignity and love for as long as they can.
Our palliative care work presents a great opportunity to help people in need whether they are sick with cancer, HIV & AIDS or any other life limiting illnesses. We continue to welcome and value partnerships in achieving this goal.