Leprosy mailing list – May 10^th,  2006

Ccn:     all.
Ref.:    The Impact of Prevention of Disability (POD) Services

From:   Ganapati R., Pai V.V., Mumbai, India

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Dear Dr Noto,

 

Some of the points raised by Mr Douglas Soutar (LML - May 4^th, 2006) have already been dealt with by us (LML - March 14^th, 2006) in our reply to queries on the abstract titled “Have we understood the epidemiology of disabilities?”. We thank him for the opportunity he has given us to explain the principles of our work in greater detail.

 

We wish to reiterate that the whole object of the study is to answer the following five very simple questions in relation to the distribution pattern in two rural pockets about 40 to 80 kms from Bombay.

 

1)  How big is the load of only visibly disabled leprosy patients (grade II) in these two pockets (‘Talukas’) of rural population of about 200,000 to 300,000 i.e. to work out the crude prevalence rate of visibly disabled patients per 10,000 population)?

 

2)  Can “Community volunteers” (CVs) derived from the villages working under the supervision of conventional “paramedical workers” (PMWs) identify such visibly disabled leprosy patients in a rural set up after simple training?

 

(The identification of grade I disabilities was not the object of the study, though such patients whenever encountered, were given appropriate treatment so that they did not progress to grade II.  Grade I was intentionally not included because in our earlier experience even trained PMWs were not accurately identifying such patients under both urban and rural field conditions. They are however able to assist assessment and treatment procedures practiced in our clinics among patients referred to us or those reporting voluntarily.  As Mr Douglas has rightly stressed we do realize how important prevention of disabilities progressing from grade I is)

 

3)  Can CVs apply simple adaptations like splints, footwear etc and offer dressing at the door step of grade II patients and counsel them so that there is no worsening of disabilities (“POWD” which Mr Douglas is referring to)?

 

4)  Can CVs working under supervision, make simple assessment of the disabilities to study the impact of the interventions practiced in a rural set-up?

 

5)  Can the staff of PHC and sub centres identify grade II disabilities in their small population and offer simple aids referred to above?

 

We could get answers to all these five questions and some of them are highlighted in the abstracts of LML.  We propose to deal with these issues in greater detail in the forthcoming publications.

 

As regards the disparity in the number of patients referred to, though we reported on 839 patients in the first instance, assessment results were available on some more new cases.

 

We believe that the “deformity” which is obviously visible among the patients living in the community unattended to, is primarily responsible for the stigma, as common people go by any abnormality which is obviously seen by them.  Mental association of such “deformities” with infectivity introduces fear of leprosy.  While obvious distortion, disfigurement, mutilation and malformation are quite easily perceivable by any one, “malfunctioning” of the affected parts, i.e. “disabilities” resulting from such malformations are generally not so strikingly perceived by the public.  In fact some enlightened people  prefer to use the term “differently-abled” as even the term disability is not acceptable to them.  We accept that we have used the term disability and deformity interchangeably. After all, deformity is not a term as derogatory as the word “leper”.  We however appreciate the advocacy of the term disability by Mr Douglas “wherever possible” and his quotation of William Shakespeare is truly thought provoking.

 

Disability refers to “any restriction or lack of ability (resulting from impairment) to perform an activity in the manner as within the range considered normal for a human being” (Reference:  van Brakel WH. 1994, Peripheral neuropathy in Leprosy,- The Continuing Challenge, Introduction: Leprosy: a Neurological Problem? Appendices, Chapter 1,  pp15-17).

 

We repeat that mere identification alone of the visible structural change of eye, hand or foot resulting from impairment and offering simple adaptations was the aims of the study.  We do not lay claims for any taller objectives, which would have been next to impossible in the deprived rural terrains where we carried out this study.  

 

An interesting observation in the course of this study is the fact that since the volunteers were derived from the same rural communities and as they were physically handling leprosy patients (offering of splints, footwear, ulcer-dressing etc) at their door step, the family members and the neighbourhood, who were witnessing this, overcame the fear associated with the disease. This observation indicates that the actual practice of physical care by handling deformed subjects in their homes (and not in a hospital or clinic set-up) is more important to reduce stigma than preaching that leprosy patients should not be ostracized.

 

We intend to confirm the validity of this observation by a questionnaire study, funds permitting.

 

Thank you

 

Dr R Ganapati and Dr V V Pai

 

 

PS:

We have not come across any population-based studies focussing on the prevalence rates of grade I disabilities or acute/silent neuritis and the impact of treatment in any community including involvement of PHCs. If Mr Douglas can quote any references it will be helpful to the NOTO readers, particularly to our group of workers and volunteers. If so the field methodologies employed will be of special interest to us.