Community care of the physically disabled due to leprosy.

This preliminary presentation based on extensive field studies carried out by Bombay Leprosy Project, a research-oriented NGO, portrays the alarming dimensions of the disease burden felt by rural communities and 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.

INTRODUCTION

Leprosy “elimination” based on mass chemotherapy is believed to be one of the most successful public health programs in India. However, dependence on bactericidal drugs alone and expectation of any significant impact in preventing nerve damage and sequelae proved to be unrealistic from the point of view of reaching the objective of “eradication” or ultimately the goal of “World Without Leprosy.” Still, the health planners seem to be quite complacent. Unfortunately, devising a mass strategy to save the affected nerves and the devastating complications was not their priority.

Though the subject of Leprology is a part of Dermatovenereology in India, the neurological aspects of leprosy have not received the attention they deserve at the hands of most dermatologists. Lack of field experiments on comprehensive community-based leprosy work, especially with reference to disability prevention, is a setback for reaching the goal of CBR (Community-Based Rehabilitation).[1]

Government of India has rightly taken a serious note of the changing scenario and has shifted the emphasis to disability care in the “post-elimination era.” The publication of operational guidelines on “Disability prevention and Medical Rehabilitation” is an evidence of this. Though this theoretical document is used widely for training particularly the Primary Health Center (PHC) staff, the impact of the shifted policy is not evident.

This preliminary presentation based on extensive field studies carried out by Bombay Leprosy Project, a research-oriented NGO, portrays the alarming dimensions of the disease burden felt by rural communities and recommends a cost-effective field model.

FIELD OBSERVATIONS (PHASE I AND II - 2007 TO 2008)

A crash drive of rapid surveys was organized in Thane district by using community volunteers who identified visible disabilities due to leprosy (grade 2, WHO) in rural “talukas” (subdivision of district) adjoining the megalopolis of Bombay in 2007-2008. Physical care was limited to provision of simple splints and footwear only, as long-term care was not the object off the study.

A startling figure of 3 000 (approximately) such patients living in some pockets led to intensive observations on a population of 480 000 in three talukas. A total of 1 250 patients were identified in this population covered by 11 PHCs. PHC of the government was taken as a unit because leprosy is integrated with primary healthcare in India and leprosy disabled are expected to be the offered service at these centers. The mean prevalence rate (PR) of deformities was 26/10 000; PR of active disease needing specific chemotherapy was about 3/10 000 (see maps attached).

FOCUSED SURVEYS FOLLOWED BY LIMITED SERVICES IN SHAHAPUR TALUKA

(Phase II - 2009)

The next objective was to limit the surveys and to focus on just one taluka called Shahapur which has eight PHCs covering a population of 212 104. More than 500 patients were unearthed during 2009, the PR being 27/10 000. The PR in four PHCs in particular in this taluka has been documented.[2] It was realized that to provide ideal services at the community level to such large number of patients in the whole of Shahapur taluka, most of them being tribals living in hilly terrains, will pose tremendous financial and logistic problems. It was therefore decided to intensify services to already identified patients in one of the PHCs.

INTENSIVE PHYSICAL CARE AT THE COMMUNITY LEVEL IN VASHIND PRIMARY HEALTH CENTER

(Phase III - 2010)

The aim of the study was now to concentrate on manageable number of patients and transfer the disability care technology to the community with the ultimate object of reaching the concept of CBR. The significance of this study lies in the fact that work at the grass root level is carried out entirely by the volunteers derived from the same rural areas where patients were residing. This was done with the ultimate object of empowering the community to take over responsibility without too much of reliance on expertise from other sources. In the areas under investigation, no other community-based organizations engaged in leprosy work or even general public health were functioning. The question of involving any “sister NGos” did not arise.

As a part of Phase III, one PHC called Vashind with 52 466 population was adopted in 2010 and 140 patients were targeted for intensive physical care and long-term follow-up.

DOORSTEP SERVICES OFFERED

Figures 1–6

Figures 1-4

Gruesome deformities in rural communities. 110 patients receive door step physical care under LPRF in some PHC areas

Figures 5 and 6

Services offered at the community level

Prefabricated low-cost aids and appliances with physiotherapy

Wax therapy by physiotherapists and volunteers in village centers

Grip aids for mutilated hands for a few selected cases (Prepared out of easily available cheap araldite material mixed with hardener)

Standard microcellular footwear for simple and moderately advanced plantar ulcers.

Moulded footwear for complicated deformity.

Ulcer dressing kits for home self care and dressing of plantar ulcers at door step by experienced dressers.

Dressing of plantar ulcers at door step by experienced dressers

Care of intractable foot problems, including application of plaster of Paris casts by trained dressing teams.

Amputation in highly specialized institutions in rare cases.

Maintenance of proformas and documents, calculation of cost of service to each patient*, album of photographs of every patient, field maps of location of patients to understand the epidemiological and logistic implications, computerization of data, etc., form the special features of this unique investigation. The impact of the intervention on the clinical condition of patients is studied at specific intervals.

EXTENSION OF SERVICES TO PATIENTS IN 3 MORE PRIMARY HEALTH CENTERS (PHASE IV - 2011)

It was felt important to gain more personal experience and that of the supervisory team and service providers, and confidence in establishing a “Cost Effective Field model of Community Service to Disabled Leprosy Patients.” The model should be sustainable and the technology should be transferred to the government staff of PHCs. The study therefore is extended to a population of about 90 000 housing about 300 patients. The 140 patients already recruited in Vashind PHC will be followed up for ensuring compliance.

CONCLUSIONS

This observation of this study assumes tremendous significance as a cost-effective field model 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. No models are therefore available for comparison. It is however possible that community-based works with different objectives are reported.

The complacency over the decline in PRs of leprosy which prompted the government to integrate total leprosy management with general health services is not justified. Though leprology is included in the specialty of dermatovenereology, the importance given to the neurological sequelae at the community level by the experts is not quite satisfactory. The technology of physical care of the disabled leprosy patients which is confined to hospitals and institutions has not penetrated into the community and doorstep of patients.

In view of the preliminary nature of this report, it is too early to predict how far the whole community on a large scale can be empowered to carry out the activities described here.

Though the PHCs have accepted and even appreciated the services offered to patients, it may still take far more time for the workers to perform the disability care activities themselves. There are some instances of “ASHA” workers (of the “National Rural Health Mission”) who have assisted our volunteers, but we cannot generalize on the basis of limited experience. There is a clear indication, however, that provided such programs are encouraged to function consistently as models for longer periods in PHC areas, the handing over of technology to the PHC is possible. This will ultimately meet the policy of WHO and the government aiming at total integration.

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.