Leprosy Mailing List – February 20, 2022
Ref.: (LML) Paradigm shift: how leprosy workers lost their skills and leprosy became an NTD
From: Ben Naafs, Munnekeburen, the Netherlands
Dear Pieter,
I would like to emphasize the "cri de Coeur" of Henk Eggens in LML dd January 4, 2022 , where he shared his observation of the quickly disappearing knowledge and clinical skills in leprosy in the field and even at central management level. In a presentation on infoHansen https://bit.ly/32V6Fpw , he analyses the reasons and provides suggestions for improvement.
The most important way to arrive at a solution, he argues, is to find the root of a problem. As an example, he uses a patient with an undiagnosed leprosy reaction. An example also shown by Salvatore Noto in LML (LML – January 7, 2022). His method works with why's. This is a way of solving problems and it's the way many people think unknowingly. But it is important to become aware of the way you arrive to an answer. His answer on this observation was: " it is the political commitment".
I fully agree with him. In the 1980th, over 40 years ago , the knowledge to prevent and treat leprosy was present and with the introduction of MDT expanding and increasing in the field. Twenty-five years ago, the patients were better off than at present. What went wrong and why was the political commitment lost?
There are two important reasons:
- The first was the responsibility of the WHO, because it needed new publicity after the elimination of smallpox in 1980. The fight against leprosy went well at that time and leprosy was "chosen". It was decided to eliminate leprosy. But with the way the administration of the implementation was done, such an elimination was not possible within the time until the year 2000. As a result, because the goal must be reached, definitions were changed, treatments shortened, patients taken off the books, and leprosy control projects felt pressured to report fewer and fewer new patients. Yet it was not possible to eliminate leprosy as a public health problem in the year 2000 and the period to achieve it was extended to 2005 and lo and behold, it was achieved worldwide.
During this period, the emphasis came on early diagnosis to stop the transmission and not so much on treatment other than providing MDT. (Just to remember: the main objectives of the leprosy control program before were to cure people with leprosy, to stop the transmission of the infection and to prevent disabilities).
- Secondly after the year 2000, governments concluded that leprosy control programs could stop and integrated in general health care. Clinical leprosy teaching was neglected because it was expected that science would take over and they had many other problems. After that time the emphasis of WHO and ILEP was directed to the disabled leprosy patients and their introduction in society, a good argument to ask for contributions from the public.
For experienced leprosy workers it became less interesting because more and more the emphasis went from clinical skills and skin smears to serological laboratory diagnosis and later PCR's. Much of the available money and attention was directed to this way. Clinical diagnosing and the clinical skills in follow-up were neglected. Experienced leprosy workers and supervisors were assigned to do other jobs as well and went to more profitable fields like TB and HIV programmes. Thus, many left the field of leprosy control.
When it was noticed that patients were diagnosed late and therefor the disability among the diagnosed patients increased and the percentage children went up, stigma was blamed. To concerned people, it was obvious that there was hardly clinical knowledge left, except as Henk Eggens mentioned in a few centres of excellence. Most of the supervisors with clinical knowledge were gone and the health worker could not get teaching on the job anymore. The supervisor had become an administrator and leprosy a Neglected Tropical Disease. Vertical lines for advice and referral had disappeared or became for disadvantaged patients impossible to access.
With teledermatology and smartphones the concerned try at present to fill the gaps. But for this you need time and knowledge too. Moreover, you need experts to give advice. There are so few left that it may have become impossible. ILEP and WHO involve administrators, epidemiologists, immunologists, infectiologists, public health specialists, psychologists but no in the field experienced leprologists to manage leprosy. These leprologists you need to diagnose complications in time and treat appropriately. Giving care and prevent complications will bring patients to come forward in time, because they will notice that they get the proper attention. Then pictures of deformity are not anymore to bring stigma about.
Ben
Dear Ben,
I am not commenting specifically on your write up, but my comment is more general that can apply partly to what Henk had written and what you are saying. I feel that in some ways, talking about the past, before pre-1980s and even 1990s, is like talking of another world. It is not just leprosy diagnosis and treatment have changed, the whole world has changed and in ways which seem incredible.
Just think of leprosy associations - all their worlds of big fund collections, doctors, and hospitals everywhere, missionaries - everything is gone. I have seen the changes in AIFO, it is a completely different organisation working very differently than even 15 years ago. Countries have lost their health budgets and recent Covid pandemic has highlighted fault lines in such a stark way.
We talk of PHC and universal health access - leprosy would need to find a place somewhere inside there. But I don't think that we have yet renewed our ideas of PHC and universal access that can fit in this new world. I feel that we all are still enclosed in the old way of thinking, and we have difficulties in imagining how to change with this new world.
In Asia and Americas and increasingly also in Africa, people look for everything on internet, through Google or YouTube. In a way LML takes advantage of that new world, but how can doctors, health workers and patients themselves use the new technologies to learn and provide services for leprosy is a key question.
As I said, it is not a specific comment but a more general one.
Warm regards,
Sunil Deepak
Dear Sunil,
I fully agree with what you write: my comments are too cramped, and I realize that. The World and its mentality have changed indeed, particularly into controlling the people who do the actual work. The working force has to surrender to "administrators" whose knowledge on organizing the work may be excellent, but who miss the potential to do the actual work themselves. Even if they know how to perform, they miss the skill. Therefore, they are no good in teaching these skills. They know so much that they have to concentrate on one subject, e.g. serology, epidemiology, etc., and applying that in the field. But that only theoretically, since they cannot do the work in the field because they lack the skills. They will tell others to do it and then control them and check on them. They are relatively better paid and more appreciated. Thus, if you as a "worker" want to move up you need to develop the ability to control and can forget your skills.
In this process I will not mention the empathy that has disappeared. It's gone because if someone makes mistakes and you as a controller don't punish it, you're not doing your job right. The missionary thoughts are laughable. Peace corps? Even Doctors without Borders is being run by administrators, and clinicians turned to administrators.
It is like the Covid epidemy run by administrators and even those who are clinicians turn to administrators. For the patients there are still workers but exploited for the goal for which we have no definition.
Indeed, we as moderators of LML and our writers are part of it. We write it for the patients and for the workers. But do we? Or do we only want to show what goes wrong, our excuse being we are involved in other things and become too old to do it ourselves.
Ben
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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