Susan Warren and Joan Rae have just returned from a fact finding trip to Lilongwe and Blantyre in Malawi to discover what Haemophilia Scotland can do to support a newly founded Haemophilia Society for Malawi.
An estimated 1 in 1,000 people worldwide live with a bleeding disorder (this ratio is the same the world over) but 75 percent of these still receive inadequate care or no treatment at all; their condition remains undiagnosed. In Malawi, proper diagnosis and treatment is non-existent; the baseline infrastructure, resources, and time do not exist to tackle chronic conditions like bleeding disorders and there is a lack of knowledge amongst health care professionals resulting in premature death. Two cases were reported to us during a Haemophilia Workshop we hosted. The first case involved a 14 year old boy with swollen knees whose bleeding could not be controlled after a clinical officer performed a knee aspiration whilst trying to rule out arthritis or gout. The other case involved an 18 year old boy who was put on three different treatments including that of Tuberculosis yet the boy’s condition was haemophilia. Both boys died.
We had a full week visiting hospitals (including wards, lab, physiotherapy), the Malawi Blood Transfusion Service, Kamuzu College of Nursing, the Ministry of Health, College of Medicine and meetings with various potential stakeholders. Although few people in Malawi have been diagnosed, we did meet a mother and her two sons, and a 23 year old young man, clinically diagnosed with haemophilia. None have received a laboratory diagnosis, nor do they receive treatment other than Fresh Frozen Plasma (FFP) occasionally, and pain killers for which they are charged.
Nothing could have prepared us for the harrowing conditions patients have to endure at Kamuzu Central Hospital In Lilongwe. Wards are overcrowed as no patient is turned away. Well used, damaged mattresses are lined up along the floor of the corridors. Bedding is not provided so patients need to bring their own, as well as a guardian who delivers their basic day to day care, make their food etc. The sick and the dying lie side by side in the blistering heat. It got worse in the paediatric ward where there were three children to a bed where we saw one parent hand bagging his child. At least here there are many doctors (especially from developed countries) working in the ward.
As the week progressed we were able to meet with the Deputy Minister for Health and speak to him about the service we receive in Scotland and the role of our patient organisation. He has offered his support to the newly formed Malawi Association. At the end of the week we hosted a Haemophilia Workshop which was attended by members of the College of Nursing and College of Medicine as well as the mother and young man affected by haemophilia. We attended the first meeting of the Directors of the new Association and identified their priority; which is to identify people with a bleeding disorder and diagnose them though laboratory tests. I hope we will be able to help with that.
Although a difficult trip, our visit provided the catalyst for bring people together who can help set up a service for people with a bleeding disorder in Malawi. Susan Warren