THE EXPERT PATIENT PROGRAMME
Great things can be achieved when we utilise existing resources in an innovative way. This is exactly what our Expert Patient Programme taught us.
The benefits of this programme ran both ways by both reducing the strain on clinical staff and boosting the self-esteem of the Expert Patients themselves. In 2013 it was listed as one of the Rockefeller Foundation’s Top 100 Innovations.
Back in 2006, One to One Children’s Fund supported the Paediatric Aids Treatment for Africa (PATA) Forum. Here, staff gathered from clinics across the continent to discuss the challenges they were overcoming, measure their progress and come up with new solutions. One of the key issues identified was that clinics had too many patients and not enough staff. This meant that doctors and nurses were unable to provide adequate care to the people they were treating, or follow-up with people who had stopped taking drugs. Additionally, it became clear that patients in rural areas were having problems accessing medical assistance because of the distance to the clinics, along with problems resulting from the inadequate provision of resources and attention to the needs of HIV and AIDS patients from the government. What could we do to help solve these problems?
“I was very sick in bed and I had no one to help me. One Expert Patient happened to be around my area and found me in this state and led me to the hospital. She is now my sister.”
One delegate had a suggestion. People living with HIV could help clinical staff with their duties, and who could be better placed to counsel someone living with HIV? Together with PATA, we developed this idea into the Expert Patient Programme, which launched in 2007. The Expert Patients had a unique ability to encourage communities to seek HIV testing and care, provide peer support and promote drug adherence. They became role models in the clinics and their communities, demonstrating to their peers what can be overcome and achieved, inspiring and giving hope to many people living with HIV. Male Expert Patients were particularly successful at reducing stigma and encouraging other men to get tested for HIV. After witnessing the amazing success of this project, the training and employing of people living with HIV as Community Health Workers has become a widespread idea.
IMPACT
Boosting the self-esteem of Expert Patients, enhanced their employability and increased their income.
Providing additional resources to 65 health facilities across 18 countries and reached over 50,000 children.
Meeting the emotional needs of people living with HIV and reducing stigma attached to HIV.
Providing additional resources to 65 health facilities across 18 countries and reached over 50,000 children.
In 2013 it was listed as one of the Rockefeller Foundation’s Top 100 Innovations.
The Expert Patient Programme methodology continues to be refined and underpinned REACH and our work in Zambia and Zimbabwe.
““The expert patient program makes me feel fulfilled, instructed and hopeful. At present, I look at life in a very positive way. In my family, they are aware that one can live longer with HIV/AIDS.””
HOW LINA BECAME AN EXPERT PATIENT…
29 year-old Lina from Kenya had her life turned upside down when she became a widow very young. After her in-laws abandoned her, Lina was left with nothing and no one to turn to. Lina’s health was deteriorating. She fell seriously ill a number of times. Eventually, Lina went for Voluntary Counselling and Testing (VCT). She found out she was HIV positive. Her son Ryan tested negative. She knew that he could only thrive if she continued to live. “Despite the hatred, discrimination, and resentment all around me, I did not worry – I just continued to struggle through the daily life.”
Lina enrolled in the HIV care program , she started on antiretrovirals (ARVs). She experienced difficult side effects but the doctors and nurses encouraged her to keep going, stay focused and never to lose hope. Lina’s health started to improve. After ARV Adherence Counselling training as part of our Expert Patient Programme, Lina started volunteering as a peer educator at the Suba District Hospital. Six months later, Lina was employed as a Community and Clinic Health Assistant (CCHA). She greatly enjoys working with everyone and is happy to live positively: “I dream of one day purchasing land to provide my son with a place to truly call home and see him through school.”