Guest post: Christine Katusiime, RHD Patient Support Group-UHI
The RHD Patient Support Group in Uganda was started in 2015 by a group of patients diagnosed with rheumatic heart disease (RHD) attending the Uganda Heart Institute (UHI) cardiac clinic in Kampala. This group is composed of patients who have had different experiences with RHD. Some have undergone surgery while others have not yet required it. They are supported by the UHI doctors and nurses in a continuum of care for their disease. The group’s mission is to support people living with rheumatic heart disease and fight RHD in Uganda through awareness programmes by bringing hope and giving a voice to patients, caregivers and communities.
People who live with a chronic illness are faced with psychological and emotional challenges. Unlike other chronic illnesses like HIV/AIDS and cancer, where patient counselling and support services are well established, counselling services have not yet been prioritised for RHD patients. The increasing number of RHD patients and shortage of specialised health practitioners has limited the time a doctor or nurse can spend with a single patient. Too many patients make their way home with a lot of unanswered questions about this new disease they have been diagnosed with. The caregivers of these patients, many of them parents or guardians of young children, are worried and anxious as they lack the knowledge or experience to care for a patient living with RHD.
“Am I the only one in this situation? How many more years will I live with RHD? Will I manage by taking these drugs for the rest of my life? I think the doctor and this nurse are just comforting me – they do not understand what I am going through. It’s only someone going through this same situation who can understand me. Who can I trust to give me true and practical information that understands the community and challenges of where live?”
We at the RHD Patient Support Group-UHI believe that the emotional and psychological wellbeing of a patient is the first step toward a steady recovery. We address this need through peer-to-peer support where patients come together and share their experiences. This activity bridges the knowledge gap among patients and focuses on providing emotional and moral support for one another. The support group fulfils many functions, such as educating patients and their families, providing the platform to share the illness experience, providing strength to its members, and raising public awareness through community outreach activities.
We realised we were only impacting patients and communities around the city of Kampala and a few rural areas neighbouring the central region of Uganda. Many other patients and communities distant from the central region of the country remained unsupported. We knew that awareness and support activities would be best done by patients who live in those regions if those patients could be empowered to create their own organised formal RHD patient support groups.
That is why we were inspired to create a single platform for all RHD patients in Uganda by creating and empowering other patient support groups in the network of satellite clinics supported by the Uganda Heart Institute. We targeted five existing satellite clinics in Kampala, Entebbe, Mbarara, Gulu and Lira and started the initial work of helping them create their own local support groups. Creating these patient support groups in satellite clinics where RHD patients are cared for in their districts was our long-awaited objective following the encouraging achievements of the RHD Support Group at Uganda Heart Institute at Mulago Hospital. These patients have been empowered with knowledge about RHD with the help of their satellite clinic nurses and the RHD support group-UHI.
The Rheumatic Heart Disease Support Group at Uganda Heart Institute received a small grant from World Heart Federation in 2020 to create new RHD patient support groups and empower those that already had been formed. Then the COVID-19 pandemic struck and, along with the rest of the world, we had to take a step back and create an alternate strategy to navigate the new order. We therefore produced a documentary highlighting the impact of RHD on people’s lives and how our patient groups are helping to improve their quality of life, in an effort to reach out to a bigger audience during this pandemic.