Leprosy Mailing List – November 7th, 2011
Ref.: “Community care of the physically disabled due to leprosy”
From: R. Ganapati, BLP Mumbai India
Dear Dr Deepak,
Thank you for your comments (LML November 7th, 2011). I am extremely glad that you have taken interest in this piece of study. This crucial community based investigation has evoked no response from any dermatologist or specialists in community medicine. (Pardon my not using the words "persons affected by leprosy" throughout the text of the article).
(1) The study aims at POWD (Prevention of Worsening Disability) rather than POD. The work is totally carried out by village level youth including a few young cured leprosy patients. They are a part and parcel of the villages where the patients are derived from and they are familiar with the local logistics. Recently a donation of 2 to 3 motorcycles has greatly facilitated their mobility and has brought down the cost of commuting to remote corners of the taluka.
After simple training they surveyed the villages and identified visible disabilities under the supervision of experienced paramedical workers mostly retired from govt service. Diagnosis was confirmed by the staff of Bombay Leprosy Project. As detection of grade I disabilities will involve eliciting history and physical examination, this was not given the priority. As the prevalence of frank, uncared for mutilated limbs were rampant (prevalence rate of grade 2 disabilities alone being about 25 per 10,000) and needed doorstep services, we limited the object of the study to care of the already disabled (POWD) rather than identifying and diagnosing grade 1 which is too much to expect from the volunteers. However, whatever cases came to our knowledge during surveys were examined by senior staff and handed over to the PHC with due advice on how to manage the patients. The follow up of such cases was beyond the scope of this part of the study. Now that some volunteers are motivated and experienced we may take this up as a separate investigation provided we get donor support.
(2) Almost all patients had completed the course of MDT. The list of patients released from treatment (RFT) was obtained from the PHCs. It was difficult to identify from the rudimentary details obtained from old records. This list had very few patients, whereas surveys by the volunteers were the main source of patients. Very few patients under active treatment did have grade 2 disabilities. As they were expected to attend PHCs we could only "advice" the govt staff on care of limbs (which was mostly not followed) and our staff had to offer domiciliary care. Offering MDT was not the aim of the study as PHCs were expected to take care of this.
(3) All the grass root level work was carried out by rural workers receiving remuneration on the days they worked. Physiotherapists and trained staff specializing in ulcer dressing were used for offering training to volunteers in the local language. Demonstration of the techniques like dressing and, simple exercises, usage of MCR footwear and wax therapy by the expert team was easily picked up and practiced. Plantar ulcer is the biggest problem and most of the simple ulcers are attended to by the volunteers. Physiotherapist and dresser are needed for refractory ulcers needing minor surgery under aseptic conditions. This is also practiced at the door step to the maximum extent possible. Occasionally plaster casts have also been applied. Patients beyond the scope of domiciliary service are brought to Bombay in the vehicles for special footwear and amputation etc.
(4) As for "home self care", among young, motivated, health conscious patients we have found this is practised after proper counselling. Most of the elderly patients (many of whom are alcoholics) hardly care for their limb protection if left alone. There were instances where family members offered care after counselling. I believe attitude towards self-care is a special subject and in the areas adopted it is possible to study this.
(5) I fully share Dr Sunil , your apprehensions about the PHC staff taking over these activities. At present they are passive observers from a distance. However if the health planners among the govt officials study the "Shahapur Model" as it is now called and adopt it seriously, this may be a break through and will benefit the community in the distant future.
(6) This is just a preliminary venture in a deprived tribal population living in inaccessible hilly terrains. We have started an independent assessment by a social scientist through a questionnaire method in a total of 656 disabled patients in Shahapur taluka, though donors do not seem to be interested in evaluation. A sample has been selected consisting of patients, household relatives, nearby community members, volunteers etc. and the interview is in progress. The impact of the physical care from a medical angle on deformity status is also in progress. As the cost of every item is carefully recorded, cost analysis is also contemplated. A Research Committee of experts has been formed to offer guidance. It is also possible that the service after some months may have to be abruptly withdrawn for want of donor support. Research in this neglected aspect of the care of the disabled hardly has any glamour attached to it.
I don't claim that we have carried all the technical knowledge available in institutions into the community. This is just an attempt to understand the implications of grass root level work by local village youth in the back ground of the Utopian concepts of CBR as enshrined in the definition.We have shown that penetration of technology into the remote areas is possible to some extent and it is cost effective.
If there are any further clarification is needed by LML readers, I will be pleased to answer.
With best wishes
Dr R Ganapati
Bombay Leprosy Project
