Original Article

Community care of the physically disabled due to leprosy

R. Ganapati

Director Emeritus, ABSTRACT Bombay Leprosy Project, 6/27, Amar Bhuvan, This preliminary presentation based on extensive field studies carried out by Bombay Leprosy Project, a Sion (E), Mumbai, research-oriented NGO, portrays the alarming dimensions of the disease burden felt by rural communities and Maharashtra, India recommends a cost effective field model. This study in an adopted rural population in Shahapur “taluka” of Thane District assumes tremendous significance and is worthy of replication in comparable situations. This is particularly so in the background of the absence in the literature of any similar field studies based entirely on community care of the physically disabled due to leprosy. The magnitude of the problem posed by leprosy patients with disabilities and their rehabilitation is highly challenging and is expected to pose a heavy burden on the community as well as unprecedented strain on the PHCs managed by the government. The health planners should rethink on future strategies in such a manner that human rights of the downtrodden patients suffering from the “neglected disease” of leprosy are not sidelined

Key words: Community, door step services, leprosy disabilities

INTRODUCTION emphasis to disability care in the “post-elimination era.” The publication of operational guidelines on Leprosy “elimination” based on mass “Disability prevention and Medical Rehabilitation” chemotherapy is believed to be one of the most is an evidence of this. Though this theoretical successful public health programs in India. document is used widely for training particularly However, dependence on bactericidal drugs the Primary Health Center (PHC) staff, the impact alone and expectation of any significant impact in of the shifted policy is not evident. preventing nerve damage and sequelae proved to be unrealistic from the point of view of reaching This preliminary presentation based on extensive Access this article online field studies carried out by Bombay Leprosy Website: www.idoj.in the objective of “eradication” or ultimately DOI: 10.4103/2229-5178.85994 the goal of “World Without Leprosy.” Still, the Project, a research-oriented NGO, portrays the Quick Response Code: health planners seem to be quite complacent. alarming dimensions of the disease burden felt Unfortunately, devising a mass strategy to by rural communities and recommends a cost- save the affected nerves and the devastating effective field model. complications was not their priority. FIELD OBSERVATIONS (PHASE Though the subject of Leprology is a part of I AND II - 2007 TO 2008) Dermatovenereology in India, the neurological aspects of leprosy have not received the attention A crash drive of rapid surveys was organized in Address for they deserve at the hands of most dermatologists. Thane district by using community volunteers correspondence: Lack of field experiments on comprehensive who identified visible disabilities due to leprosy Dr. R. Ganapati, Director Emeritus, community-based leprosy work, especially with (grade 2, WHO) in rural “talukas” (subdivision of Bombay Leprosy Project, reference to disability prevention, is a setback district) adjoining the megalopolis of Bombay in 6/27, Amar Bhuvan, for reaching the goal of CBR (Community-Based 2007-2008. Physical care was limited to provision Sion (E), Mumbai Rehabilitation).[1] of simple splints and footwear only, as long-term 400022, Maharashtra, care was not the object off the study. India. E-mail: Government of India has rightly taken a serious [email protected] note of the changing scenario and has shifted the A startling figure of 3 000 (approximately) such

70 Indian Dermatology Online Journal - December 2011 - Volume 2 - Issue 2 Ganapati: Care of the physically disabled due to leprosy patients living in some pockets led to intensive observations 1. Prefabricated low-cost aids and appliances with on a population of 480 000 in three talukas. A total of 1 250 physiotherapy patients were identified in this population covered by 11 PHCs. 2. Wax therapy by physiotherapists and volunteers in village PHC of the government was taken as a unit because leprosy is centers integrated with primary healthcare in India and leprosy disabled 3. Grip aids for mutilated hands for a few selected cases are expected to be the offered service at these centers. The (Prepared out of easily available cheap araldite material mean prevalence rate (PR) of deformities was 26/10 000; PR mixed with hardener) of active disease needing specific chemotherapy was about 4. Standard microcellular footwear for simple and moderately 3/10 000 (see maps attached). advanced plantar ulcers. 5. Moulded footwear for complicated deformity. FOCUSED SURVEYS FOLLOWED BY 6. Ulcer dressing kits for home self care and dressing of plantar LIMITED SERVICES IN SHAHAPUR ulcers at door step by experienced dressers. TALUKA 7. Dressing of plantar ulcers at door step by experienced dressers 8. Care of intractable foot problems, including application of (Phase II - 2009) plaster of Paris casts by trained dressing teams. The next objective was to limit the surveys and to focus on just 9. Amputation in highly specialized institutions in rare cases. one taluka called Shahapur which has eight PHCs covering a population of 212 104. More than 500 patients were unearthed Maintenance of proformas and documents, calculation of cost during 2009, the PR being 27/10 000. The PR in four PHCs in of service to each patient*, album of photographs of every [2] particular in this taluka has been documented. It was realized patient, field maps of location of patients to understand the that to provide ideal services at the community level to such epidemiological and logistic implications, computerization of large number of patients in the whole of Shahapur taluka, data, etc., form the special features of this unique investigation. most of them being tribals living in hilly terrains, will pose The impact of the intervention on the clinical condition of tremendous financial and logistic problems. It was therefore patients is studied at specific intervals. decided to intensify services to already identified patients in one of the PHCs. EXTENSION OF SERVICES TO PATIENTS IN 3 MORE PRIMARY HEALTH CENTERS INTENSIVE PHYSICAL CARE AT THE (PHASE IV - 2011) COMMUNITY LEVEL IN VASHIND PRIMARY

HEALTH CENTER It was felt important to gain more personal experience and that of the supervisory team and service providers, and confidence (Phase III - 2010) in establishing a “Cost Effective Field model of Community The aim of the study was now to concentrate on manageable Service to Disabled Leprosy Patients.” The model should be number of patients and transfer the disability care technology sustainable and the technology should be transferred to the to the community with the ultimate object of reaching the government staff of PHCs. The study therefore is extended to concept of CBR. The significance of this study lies in the a population of about 90 000 housing about 300 patients. The fact that work at the grass root level is carried out entirely 140 patients already recruited in Vashind PHC will be followed by the volunteers derived from the same rural areas where up for ensuring compliance. patients were residing. This was done with the ultimate object of empowering the community to take over responsibility CONCLUSIONS without too much of reliance on expertise from other sources. In the areas under investigation, no other community-based This observation of this study assumes tremendous significance organizations engaged in leprosy work or even general public as a cost-effective field model worthy of replication in health were functioning. The question of involving any “sister NGos” did not arise. comparable situations. This is particularly so in the background of the absence in the literature of any similar field studies based As a part of Phase III, one PHC called Vashind with 52 466 entirely on community care of the physically disabled due to population was adopted in 2010 and 140 patients were targeted leprosy. No models are therefore available for comparison. It for intensive physical care and long-term follow-up. is however possible that community-based works with different objectives are reported. DOORSTEP SERVICES OFFERED (*The analysis of cost of services offered to patients will form the Figures 1-6 subject of a separate communication)

Indian Dermatology Online Journal - December 2011 - Volume 2 - Issue 2 71 Ganapati: Care of the physically disabled due to leprosy

1 2

3 4 Figures 1-4: Gruesome deformities in rural communities. 110 patients receive door step physical care under LPRF in some PHC areas

72 Indian Dermatology Online Journal - December 2011 - Volume 2 - Issue 2 Ganapati: Care of the physically disabled due to leprosy

5 6 Figures 5 and 6: Services offered at the community level

The complacency over the decline in PRs of leprosy which is a clear indication, however, that provided such programs prompted the government to integrate total leprosy management are encouraged to function consistently as models for longer with general health services is not justified. Though leprology is periods in PHC areas, the handing over of technology to the included in the specialty of dermatovenereology, the importance PHC is possible. This will ultimately meet the policy of WHO given to the neurological sequelae at the community level by the and the government aiming at total integration. experts is not quite satisfactory. The technology of physical care of the disabled leprosy patients which is confined to hospitals The magnitude of the problem posed by leprosy patients and institutions has not penetrated into the community and with disabilities and their rehabilitation is highly challenging doorstep of patients. and is expected to pose a heavy burden on the community as well as unprecedented strain on the PHCs managed In view of the preliminary nature of this report, it is too early to by the government. The health planners should rethink on predict how far the whole community on a large scale can be future strategies in such a manner that human rights of the empowered to carry out the activities described here. downtrodden patients suffering from the “neglected disease” of leprosy are not sidelined. Though the PHCs have accepted and even appreciated the services offered to patients, it may still take far more time for ACKNOWLEDGEMENT the workers to perform the disability care activities themselves. There are some instances of “ASHA” workers (of the “National I am indebted to the Managing Committee of Bombay Leprosy Project Rural Health Mission”) who have assisted our volunteers, but (BLP) for recognizing the research wing of the Project called “Leprosy we cannot generalize on the basis of limited experience. There Patients Relief Fund” to raise donations for the field investigations as

Indian Dermatology Online Journal - December 2011 - Volume 2 - Issue 2 73 Ganapati: Care of the physically disabled due to leprosy well as the Director and all the staff of BLP for their cooperation. The REFERENCES rural volunteers working under the supervision of Mr. BO More provided efficient field services. 1. Ganapati R. Community Based Comprehensive Leprosy Work in Rural Maharashtra. Lepr Rev 2010;Chapter 41:542-4. This investigation involving massive unprecedented field operations 2. Ganapati R, Pai VV, Tripathi A. Can primary health centres offer care would not have been possible without “pooled” donations from several to the leprosy-disabled after integration with general health services?--a philanthropists from India and abroad. I am particularly indebted to: study in rural India. Lepr Rev 2008;79:340-1 (1) Dr. and Mrs. Klaus Winter of HDZ, Germany, (2) European Academy of Dermatology and Venereology (EADV), (3) Dr David Kearns of Georgia, USA Cite this article as: Ganapati R. Community care of the physically disabled due to leprosy. Indian Dermatol Online J 2011;2:70-4. Mr. Rahul Gupta and Mr. Sanjay Kulkarni offered competent computer Source of Support: Nil, Conflict of Interest: None declared. assistance.

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