In order to understand the World Federation of Hemophilia (WFH) Hemophilia Centre Twinning partnership between Khartoum (Sudan) and Basingstoke (United Kingdom), as part of the WFH Twinning Program, it is important to reflect on and consider the context.
Sudan has a long history of conflict and turmoil: from gaining independence, to the first civil war from 1955–1976, the second civil war from 1983–2005, and the crisis in the Western region of Darfur. It is estimated that 1.5 million people died during the decades of fighting in both civil wars.
When the Twinning partnership between Khartoum and Basingstoke began in 2011, the nation was divided in two, with South Sudan becoming an independent country. War and conflict has left repercussions across every sector of the country. Political tensions, sanctions, and economic recessions have also left its lasting marks on the country. Any health system does not effectively work in isolation from politics and economics.
It is within this setting that this Twinning partnership began. The original goals were to improve the standard of hemophilia care in Sudan, spread the services to areas outside of Khartoum, and increase the number of identified patients. After four years of working in collaboration, Khartoum and Basingstoke have made great strides. Effective lobbying and advocacy was an immediate priority. Working with the Sudanese Ministry of Health and the Ministry of Social Welfare has allowed the partners to promote the needs of patients with bleeding disorders, in addition to advocating for an increased budget for hemophilia care and improved access to treatment. Capacity building has been another area of focus with the completion of physiotherapy workshops and improved laboratory diagnosis.
There are elements of the Twinning partnership that have left a lasting impression on both treatment centres. The Twins have recognized each other’s strengths and how this can provide learning lessons, from collaboration with patient organizations, to the effective use of resources and innovative ways of operating on patients with complex pseudo-tumors.
According to the WFH 2013 Global Survey, there were 780 identified people with hemophilia in Sudan, 199 with von Willebrand disease, and 216 with other bleeding disorders. With a population of nearly 38 million, the work continues in Sudan to identify more people with bleeding disorders. Equipped with skills and knowledge from the WFH Twinning Program, the Khartoum Teaching Hospital is dedicated to improving care within their community.