Leprosy Mailing List – June 29, 2013
Ref.: (LML) Preventing Disease and Disability through Innovative Collaboration across Diseases
From: Mary J Geyer and Linda Lehman, American Leprosy Missions
Dear Pieter,
Could you publish this letter, which you can find also on the ILEP website, on the Leprosy Mailing List.?
In Hansen's disease/leprosy, other neglected tropical diseases (NTDs), and many disabling chronic conditions, unnecessary morbidity and disability can be prevented when problems are identified early and appropriate actions taken. These include good basic care at the community level and appropriate referral when needed. From a patient's perspective, a lasting cure does not merely mean the absence of disease but functional recovery that permits successful performance of routine daily activities and full social participation. Thus, basic care must be integrated within disease control activities to achieve a complete cure. Unfortunately, this is rarely the case. Global collaborative efforts to eliminate NTDs over the past decade have focused almost exclusively on preventive chemotherapy through mass drug administration (MDA) while scaling-up interventions for NTDs related morbidity and disability lag far behind. However, that is about to change if American Leprosy Missions' technical experts, Linda Lehman and Mary Jo Geyer, have their way. The two presented on the need for integrated (not disease-specific) care at an ILEP meeting held in conjunction with the NTD 2020: Uniting to Combat NTDs: Translating the London Declaration into Action, Washington DC, November 17-19th, 2012.
Addressing morbidity and disability is a necessary part of a continuum of prevention, care and treatment for individuals suffering from the consequences of disabling diseases and chronic conditions. Morbidity and disability is often lifelong which leads to significant hardships for the affected individual, their families, and communities. People suffering from chronic health issues must have access to continuing care and may require support throughout their lives to properly manage their disease, and to prevent the progression or worsening of their condition.
Recent research has demonstrated the positive synergistic effect of community-based health education and basic care on efforts to prevent and control NTDs. Basic care at the community level is strikingly similar across diseases. Common elements of care provide opportunities for collaboration among stakeholders with technical expertise and experience in morbidity management and disability prevention. Thus, those working with Hansen's disease/leprosy can expand their sphere of influence through innovative collaboration with NTDs and other chronic conditions. Never has the timing been more critical for leprosy organizations and workers to collaborate in shrinking the circle* of those affected by leprosy through management of morbidity and the prevention of disability across diseases.
To this end, collaborative efforts by various ILEP Members and stakeholders from diabetes and other NTDs have coalesced around the "Legs to Stand On" initiative. This initiative is dedicated to the prevention of disability through evidence-based, patient and community-centred care across diseases in less-resourced settings. Examples of care issues that cut across disabling diseases and conditions include: early detection of disease and adequate management of issues such as; water, sanitation and hygiene; nutrition; skin, nail and scar care; wound care and reduction of swelling; pain management; preventive footwear; maintenance of movement and mobility; preservation of vision; empowerment and reduction of stigma related behaviours. These care issues have been identified by community health workers and persons affected by Hansen's disease, lymphatic filariasis, Buruli ulcer, other NTDs and chronic conditions such as diabetes.
Thus far, the LTSO initiative has focused on two goals, 1) the development of integrated training modules and implementation guidelines and 2) the establishment of an open access, electronic repository and archive for materials on integrated care and the prevention of disability in less-resourced environments. When fully operational, the archive will provide free global access to all through the Internet. The ILEP Technical Commission endorsed the Legs to Stand On (LTSO) initiative in 2010 and various ILEP Members have participated in the development of these materials and the archive since that time.
Because "real collaboration skills are interpersonal" (Rosenberg 2010), the LTSO initiative formalized its long collaboration with technical experts from American Leprosy Missions in January of 2013. LTSO remains an independent program under the American Leprosy Missions umbrella. American Leprosy Missions serves as an incubator for the LTSO initiative and actively promotes its activities. Dr. Geyer, who has led the initiative since its inception, now serves as a technical consultant for American Leprosy Missions and remains the primary driver of the initiative.
The American Leprosy Missions presentations in Washington DC emphasized the importance of including the affected person, their families and their community in the proper management of their disease, the prevention of disability and the progression or worsening of their condition. Examples from leprosy, Buruli ulcer, onchocerciasis, lymphatic filariasis and other NTD programs were used to demonstrate key components of successful community-based care: 1) the affected person and their family are central, 2) disease control must be combined with care, 3) common problems must be identified at the community level and basic care integrated across diseases, 4) all levels of health workers including community health workers and volunteers must learn to work together and be taught to be effective health "coaches", 5) self-efficacy must be developed in affected persons, their families and communities and 6) the utilization of self-care groups, community-based rehabilitation and socioeconomic development must be used to empower individuals, improve access to services, and increase quality of life. Delegates were also updated on progress with LTSO modules and guideline development and provided with information on the archive.
Although LTSO initially focused on care issues identified with impairments of the foot and lower limb, the scope has never been limited to one area of the body. Empowerment is implied by the phrase "legs to stand on". The initiative is currently in the process of expanding to be more inclusive of all NTDs, disabling diseases and conditions in less-resourced environments. The rebranding of the LTSO initiative will begin with the restructuring of the archive in the fall of 2013. Although many components of the integrated training modules have been implemented, evaluated, and modified in community programs previously developed by American Leprosy Missions, the core set has not yet been implemented with fidelity in multiple countries. A critical component of previous training initiatives was the training of upper level and community health workers as well as persons affected by the disease together as a "team". Pilot projects are planned for the near future to evaluate the effectiveness of the approach and the degree to which the training interventions are delivered as intended.
As ILEP is actively searching for synergies with other partners and other diseases where there are similar needs for innovation in combining disease control with intensive disease management, this is an excellent window for ILEP and its Members. Windows of opportunity arise from the favourable confluence of problems, possible solutions, and political circumstances and do not remain open indefinitely. It is time for ILEP Members to form a coalition and take the lead in developing solutions for combining disease management and disability prevention across diseases.
Best regards,
Mary J Geyer, PT, PhD, FACCWS, C.Ped, Technical Consultant;
E-mail: mjgeyer@leprosy.org
Linda Lehman, OTR, MPH, C.Ped, Technical Director, Programs
American Leprosy Missions; E-mail: llehman@leprosy.org
LML - S Deepak, B Naafs, S Noto and P Schreuder
The link for the LML archives is http://www.aifo.it/english/leprosy/mailing_list/index.htm
Contact: Dr Pieter Schreuder << editorlml@gmail.com >>.
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