Who could better evaluate the quality of medical services? Only those who used these services. Who can tell more specifically about the problems encountered by patients? Only patients themselves: those who are still being under treatment, or have already completed treatment. Who can convey more accurately what families, where someone fell ill with a disease that frightens others, had to overcome? - Only relatives and friends of such patients. However, as a rule, these people are separated, and a single person, as you know, is unable to conquer alone. At the same time, their personal experience, past suffering and acquired knowledge are truly an invaluable source of information, they help not only their companions in adversity to defeat the disease, but also to society in general – to ensure necessary changes in the health service delivery and social support, to revise deeply-rooted views and approaches. That is why the Public Movement Ukrainians Against Tuberculosis Fund, as a TB-REP grantee, decided to unite volunteers from among former TB patients and their families into an independent organization: All-Ukrainian Association of People Had Tuberculosis.
A simple event, at first glance - a workshop on advocating the transition to an outpatient model for the tuberculosis treatment was held on April 28, 2016 at Kiev Municipal Social Services Center for Family, Children and Youth. To participate in it, former TB patients from various regions of Ukraine were invited: mostly people who, by that time, have underwent themselves the challenging treatment, who tried to help others, who created mutual support groups, and who communicated with relatives of those who still continued their treatment. This small group of 15 people became the core of the “All-Ukrainian Association of People Went Through Tuberculosis”, a decision taken at that workshop.
One of the Association’s first steps was to develop and publish a memo for people affected by tuberculosis. One would think, what could be new and of particular interest in a thin brochure with such a traditional name - “memo”? Indeed, it was based on essential information about tuberculosis, recommendations for preventing the disease for TB patients’ family members. But the very fact that this information was shared with potential readers by people who have already went through fighting the disease and defeated it, and the fact that for the first time in Ukraine the former patient not only did not hide his name, but also had his photo on the cover, attached value and authenticity to the brochure. "We were able to succeed – so you are, just do not give up", this was the leading idea of the publication.
Other former patients and their entourage started joining the Association. Surely, it is premature to speak of mass joining. But the members of the Association do their utmost to raise their voice, to use their experience not only to support other patients but to help changing the current model of the disease treatment. They believe their main purpose is the quickest possible implementation of the outpatient model of care, putting the patients and their families’ interest and needs at the focus of the medical, social and other services.
In 2016, the volunteers of the Association took part in two round tables related to the advocacy of the outpatient treatment model (June 29 in Zhitomir and July 14 in Kherson). Their speeches, comments, suggestions gave food for reflection for a score of reasons and prompted those on whom development and approval of regulatory documents depend towards a change in attitude to the proposed innovations, an attitude that was sometimes not just skeptical but undisguised hostile.
Founding such Associations is not an easy task: former TB patients often prefer to quickly turn this page of their life and forget about it, but they can light the problems encountered by TB patients, their relatives and friends, change attitudes towards the patients and disease.