Maluk Timor is working in conjunction with East Timor Hearts Funds .
Our Rheumatic Heart Disease (RHD) program has been gathering speed in recent months. In December 2017, while the regular visits to Letefoho and other centres in Ermera continued, the team hosted an education forum for patients and their families in Dili.
Kids line up to have the painful penicillin injection every month.
The event was well attended, with our RHD team explaining the mechanics of the disease and the importance of the penicillin treatments. It was impressive to hear the detail and sophistication of the questions being raised, both about the disease itself, and how to best access treatment.
Interestingly there was a strong sentiment among participants that the government health services should be doing more to promote community awareness and provide treatment. This is a core pillar of this program: demonstrating to the Ministry of Health how this condition can be effectively diagnosed, treated and even prevented, so that the government may eventually agree to fund and expand the program themselves.
This kind of community engagement offers real hope for the future of the program. The team have now run several similar events, mostly in Ermera, attracting a lot of interest and making solid progress in promoting community awareness about the condition, particularly among the families, friends and schools of affected patients.
The more we can tell the story of RHD, the better chance we have of mobilising community (and ultimately government) action to eradicate this preventable condition.
The team has also been studying more about RHD to prepare themselves for an echocardiography training course. As part of the upcoming PEDRINO study (to be conducted in April 2018), Timorese doctors and health care workers are being trained in basic echocardiography (heart ultrasound) to detect RHD in the field. The team have all completed an online module on RHD and echo scanning, and in early February attended a week-long training workshop in Darwin.
They are now ready to contribute to the PEDRINO study – finding new cases of RHD that can be commenced on life-saving penicillin treatment – but have also grown enormously in their understanding of the mechanics of RHD, and will be much better equipped to explain and demonstrate to patients and their families how the disease works, and how it can be effectively treated.
Meanwhile, the team are working hard to improve their systems of patient follow up and data collection. They are overseeing the penicillin treatment of patients not only in Ermera but in wider Dili. Accurate recording of patient compliance is a crucial part of this program, and the team have been learning from a number of different visiting volunteers about how to improve their database and follow up. With expansion of the program expected after April, it will be even more important to have a robust system of patient tracking and follow up in place.
In recent weeks our team has been working with the ETHF visiting surgical team on Operation GoodHearts. The team performed life-saving cardiac surgery on ten patients at Dili National Hospital in a single week, more than they would usually do in a whole year. T
he trip was a great success in every respect, and are proud of our team’s contribution.