Expanding haemophilia diagnosis and care to the north of the country
Expanding haemophilia diagnosis and care beyond the capital city to include the north of the country was the key focus of the third NNHF project in Uruguay. This was achieved by providing healthcare professionals and people with haemophilia in northern Uruguay with the required diagnosis capacity and training for dedicated haemophilia care.
Identifying areas for improvement
In 2017, when the project started, haemophilia care was concentrated in the capital city Montevideo. This situation forced people with haemophilia and their families living in the northern part of the country to travel long distances to access diagnosis and care.
NNHF partner Dr Teresa Faguaga, from the Tacuarembó Regional Hospital, identified improving diagnosis and empowering people with haemophilia as two areas for improvement that would make a significant difference to haemophilia care in the north of the country.
Improving diagnosis
As part of the project, Tacuarembó Regional Hospital were able to establish a haemostasis laboratory and train their healthcare professionals in diagnosis. They are now able to test many people for the type and severity of their haemophilia without them having to travel all the way to the south of the country.
Training for better haemophilia care
Through the project, training sessions were held in Tacuarembó and the city of Rivera located almost at the border with Brazil to expand knowledge of haemophilia care. The sessions included multidisciplinary training for healthcare professionals as well as educational and self-infusion workshops for people with haemophilia and their families.
“The overall objective was empowering people with haemophilia to learn how to manage their haemophilia and improve their health,” said Dr Maria Teresa Faguaga González, Transfusional Medicine specialist at Tacuarembó Regional Hospital, and project partner.
The project resulted in an important positive impact on adherence to treatment by people with haemophilia. Before the project started, people with haemophilia did not attend many consultations as they did not consider them particularly useful as most care was provided in Montevideo. There was a distinct shift in mindset as a result of the project as they now know that they can receive quality care and meet other people with haemophilia in their region. They can see the significant benefit this has brought to their quality of life. The trust that has come about as a result of this change has significantly improved the relationship between people with haemophilia and their care provider in northern Uruguay.
“This project has truly changed the lives of the children and young adults we have seen to date, as adherence to treatment permits them to better manage their haemophilia,” summarised project partner Dr Maria Teresa Faguaga González.
“It has truly made a change in their quality of life,” she concluded.
