Vol. 14 - No. 1
Leprosy is regarded as a serious public health problem special attention remained a niggling problem. The number mainly because of the disabilities it produces in some of of patients with disability presenting themselves at the those affected with it. It is, therefore, regrettable that very clinics was so many that leprosy continued to be regarded little attention has been given to one of the principle facets as a disease that produced horrifying disability and suffering.
of leprosy control, prevention of disability. Every year This negative image contributed to stigma and discrimination.
about 1000 to 5000 new cases with disability are detectedin India. The numbers can at best be conservative since Leprosy disease burden has come down thanks to the there may be considerable underreporting of disability in efforts of thousands of health workers. Transition from some areas. The country is estimated to have one million focused action by the vertical programme to intensified patients with leprosy-related disabilities. Even if it is an extension of MDT service coverage through the involvement overestimation, as suggested by some, the number would of the General health service has been smooth and has not by any means be small. It is unfortunate that the contributed to a large extent to the present leprosy situation.
leprosy-disabled are neglected by themselves, ignored by While integration has brought in rich dividends it has also their families and forgotten by the programme.
brought into focus unsolved problems in leprosy control.
of bandage, cotton and antiseptic cream was the health staff with too many responsibilities which otherwise ‘POD activity’ carried out by the leprosy control staff at the will impede them from participating in basic activities.
so-called mobile MDT clinics. Temporary hospitalisation Prioritisation based on established levels of competence wards established to address specially the disability problem and on compulsion of reaching the predetermined target succeeded in providing only temporary respite to a few is understandable but this in no way should deter us from patients. Management of persons with complications looking at benefits from the individual patient’s point of including disabilities related to the disease was, therefore, view. A programme which is more than 50 years old should confined largely to specialised institutions mostly run by be able to provide a broad spectrum of service that caters Non Governmental Organisations (NGO). Since the number to patients with different set of problems. There should be of such institutions was limited, coverage of patients requiring no room for excuses like, “They are not well-equipped to Editorial Office : Damien Foundation India Trust, New No. 14, Venugopal Avenue, Spur Tank Road, Chetpet, Chennai 600 031.
Telephone: 2836 0496, 2836 1910 • Fax : 2836 2367 • E.Mail : damienin@vsnl.com, damienin@touchtelindia.net Dr. P. KRISHNAMURTHY
deal with consequence of leprosy”, “It is not !It is unfortunate that a priority”, “It is difficult to implement.” Prevention of disability should start with early Associate Editor :
diagnosis and prompt treatment of incident cases. It has been three years since integrated Mr. D.V. PREMKUMAR VELU
leprosy service delivery was initiated. After Advisers :
several campaigns and training sessions, both Dr. CLAIRE VELLUT
formal and informal, general health staff appear to be competent enough to manage leprosy.
But management of complications including Dr. JACOB MATHEW
satisfactory. This is because of two reasons: the staff may not be competent to Dr. T. PRABHAKAR RAO
manage complications and a back up referral system with centres to manage patientswith different problems is not yet established. There are reports of patients with complications getting no treatment or getting treatment which is far from what is minimally acceptable and expected. Chronic or recurrent reactions which are due mainly to mismanagement of cases are becoming increasingly common. Since about 15% of MB cases and 2% of PB cases are likely to get reaction there should be a mechanism in place whereby these patients are identified timely and treated promptly to avoid the development of deformities. Every Medical Officer in the general health should be able to identify reaction but the treatment of reaction cases,depending on competence, may be the prerogative of the Medical Officer or referral CONTENTS
foci within the district identified for this purpose. The referral centre may be the district hospital or sub-district hospital or NGO project.
What do we do for patients already with deformities? The principal aim is to ensure that the deformity does not deteriorate or it is as much limited as possible. Also the possibility of reversing the deformity through reconstructive surgery should beexplored. For the first group of patients what is required is self care under the guidance of health worker. Properly trained health worker will be able to providethe necessary guidance and counseling to patients with deformity so that they are able to take care of their disabilities. Since in a district each health worker may hardly have one to 5 cases with deformity it is not difficult for the worker to take up this task. The patient can be monitored and provided guidance during the routine villagevisits at least once a month. District hospital could be trained to manage complicated ulcers including septic surgery. Experience suggests that these things can be done better with the involvement of an NGO as a facilitator. Trichy and Salem districts in Tamil Nadu are standing examples of excellent collaboration between Governmentand NGO project which has resulted in the basic health workers in 20 PHCs in Trichy and 30 in Salem taking up POD activity seriously and implementing prevention of disability in their areas on their own (This will be extended to the remaining PHCsalso so that by the end of 2006 all the PHCs in these two districts will be fullyimplementing POD).
Each district in the country may have an average of 500 persons with leprosy-relateddisability (it may vary from 100 to 3000). At least 20% of them will be eligible forcorrection of their deformity. Since majority of tertiary care centres are confinedto the South, coverage is a serious problem. It is unfortunate that no major hospitalat the state headquarters has taken up this responsibility. There are very fewGovernment Institutions which are catering to the important segment of the community.
Under the circumstance the establishment of reconstructive surgery service for leprosy-affected persons at Medical College hospital inPatna and Dharbhanga in Bihar through the coordinated effort of Government and Damien Foundation India Trust(DFIT) is indeed a laudable initiative. Surgeons and physiotherapists in these two centres were identified by theGovernment and trained by the visiting surgeon and physiotherapist from Damien Foundation India Trust. A set of surgical instruments was provided. Cases requiringsurgery were continuously fed by the District TechnicalSupport Team through the District Leprosy Officer. Following Finally, all the health facilities in the State should be provided 3 to 4 supervisory training visits by the visiting surgeon and with the list of referral centres managing reactions or physiotherapist the staff in the two centres are able to disabilities or reconstructive surgery so that patients needing manage patients on their own. Effort should be made to specialised care could be referred to these centres for establish at least one such centre in every State preferably in a Government institution for the sake of sustainability.
This is possible only if NGOs play the most important role The aim of leprosy control should be the reduction not only of facilitators rather than implementers. A network of tertiary of disease burden but of disability burden too. This will care centres run by Government or NGO across the country have a positive consequence on the perception of the would fulfill the needs of hundreds of leprosy patients with disease by the community and improve the possibility of their active participation in the programme.
Village Health Nurses bring meaning to leprosy affected Holy Family Hansenorium (HFH) project which is located The project adapted the two adjacent districts-Trichy in Fathimanagar, a village about 18 Kms from Trichy town and Pudukottai. The project first had a discussion in Tamil Nadu, has been providing service to with the District Leprosy Officer (DLO) and sought leprosy-affected for the past five decades. The activities of permission to facilitate POD in the district. The intentions the project related to Leprosy and TB control are supported of the project were not clear to the Government staff- by Damien Foundation India Trust (DFIT). From Survey they thought that the project was interested in taking Education Treatment (SET) activities implemented in a over leprosy control activities in the district. The field staff field area allotted by the Government with hospital back- from HFH had to overcome initially the suspicion up support through a large workforce of unipurpose workers in the minds of the vertical staff who were still possessive to a programme, with limited staff, of supporting and about the programme and reluctance on the part strengthening the Government programme following of the General health staff to take up ‘additional integration the journey for the project has been exciting responsibility’. Persistence paid off. The project was asked and gratifying. It has helped the Government in Trichy to train the staff for implementing POD as per Government district to establish Prevention of disability (POD) care of India (GOI) guideline. The Medical officers and former services. How the project has succeeded in accomplishing this is an interesting story worth sharing.
In spite of that POD was not implemented in the districts.
(pot, stone, washed cotton ribbon cloth -for bandage-, oil) Then the project with permission from the District Health was the key intervention. The whole process took almost Officer identified one block in each district to facilitate the introduction of POD. The key field staff of the HFH thenmet the staff of each Primary Health Centre (PHC) and The enthusiasm of the VHNs is unbelievable. When asked discussed with them the possibility of introducing the POD what made them accept the responsibility and involve component in their field area. List of cases treated before themselves in the programme their stock response is, “We integration was not available. Initial list of cases who had never knew that we could bring so much difference to the been managed by the HFH before integration was handed lives of these people. They also did not know that such over to the PHCs. Patients with disability were identified simple procedures could reduce their suffering and give from the list by the Village Health Nurses (VHN) accompanied meaning to their lives. The benefits from our efforts are by the project field worker. Training (2003) was arranged first at the PHC and then at each Subcentre. All the MedicalOfficers were trained to manage leprosy and its complications.
The project in collaboration with the DLO has initiated All the health workers were trained to recognise and refer holistic service to leprosy affected in 14 PHCs of Pudukottai reactions and manage patients with disability. The field district and 17 PHCs of Trichy district. The total population staff from HFH demonstrated the benefits of selfcare to the covered is 659168 and 473839 in Trichy and Pudukottai patients and workers. Monthly combined field visits by the respectively. In the year 2005 a total of 68 cases (29 MB) VHN and project worker was arranged. Gradually the VHNs were detected in these PHCs out of which 26 were referred were convinced about the immense benefits in the by VHNs, 4 by General practitioners and 27 reported intervention. After 3 to 5 months of combined field visits, voluntarily. On verification of cases wrong diagnosis was on-the-job training and guidance the VHNs were happy found to be 4%. There was no reregistration. The PHCs enough to carry out the activity on their own. When the diagnosed and treated 7 cases of reaction (2 ENL) and VHNs and the former vertical staff realised the intentions 3 cases were referred to the NGO project because of of HFH and saw the benefit to patients, their initial reluctance complications. The PHCs referred 10 cases with deformity was replaced by total committed involvement.
for reconstructive surgery. Total number of VHNs in the31 PHCs is 174 of whom 159 are actively involved in Patients were contacted once a month by the VHNs to leprosy control including prevention of disability. The total monitor the status. If there was any complication the patient number of patients with disability in the 176 subcentres was immediately referred to the PHC or HFH depending covered by these VHNs is 427 (33 patients with plantar on the severity. The VHNs were helped in their work by anaesthesia, 236 with disabilities including plantar ulcers, former leprosy staff (paramedical workers). Patients with 158 with disabilities without plantar ulcers). Of these disability were not issued any gauze or cotton or antiseptic 427 patients 303 were identified by the VHNs. Of the cream to avoid dependency. Selfcare with available materials 427 patients 363 are found to practice selfcare.
In public health, service is the name the providers give;
Not the one desired by those who receive.
- Krishnamurthy
Every patient is a mirror cracked and dense.
We don’t see in it what we don’t wish to see.

- Krishnamurthy
Ms. Devi (name changed) aged 24 years from Siwan District in Bihar had a patch on her right upper arm since one and a half years and she went to a local General Practitioner (GP) who treated her with Rifampicin (450mg daily), Dapsone (100 mg daily) and Clofazimine (50 mg daily) with chalmoogra oil for local application for 2 months with no response. The patient spent Rs.500 for her The traditional dai from the village asked the lady to consult the doctor at the PHC where the Medical Officer, Dr. Sushil Kumar Singh observed that the patch was erythematous with definite sensory deficit. The right ulnar was thickened but not tender. She was correctly diagnosed as PB elbow. The patient went to the PHC where a diagnosis of Type 1 reaction leprosy and treatment was initiated. About two with ulnar neuritis was made. Prednisolone was started.
weeks after the start of treatment the patch became The PHC did not have prednisolone. Technical Support Team raised, red and there was severe pain in her right Delay in reporting to PHC (lack of awareness?) Inappropriate management of disease by the GP Referral by the traditional dai to the PHC Correct diagnosis of the disease and its complication by the MO at PHC Non-availability of prednisolone for managing reaction Take complete history from patient- useful for diagnosis, management, community interventions (IEC, training of GPs, etc) Do the sensory test correctly to elicit definite sensory deficit Examine the whole body, examine the nerves before coming to a definitive diagnosis. Every person affected with leprosy is at potential risk of developing deformity. Early diagnosis and prompt treatment saves patients from adverse consequences.
Checklist for supervision of records and reports Card is complete (all the items are filled) Contents are correct (through verification from interview of patients) Correct (through verification from interview of patients) Availability (previous months of current year and annual for the preceding years) Correct (through verification from treatment register) In its response to the letter from ILEP coordinator expressing concern on setting up expected goals for 2006 GOI vide letter dated 29th December 2005 and signed by Dr. D.M. Thorat, DADG (L), has given the following explanation.
“It is therefore felt necessary to clarify that the goals indicated above are actually “expected outcome” by December 2005 and March 2006, results from a well managed quality leprosy programme which led to declining transmission potential of the diseases during the years. These goals therefore should not be construed as targets given to the States/UTs. However, female patients should receive equal opportunity to get diagnosed and treated and true new cases as being emphasized in all the meetings should not be left out of registration.
There is need for State / District authorities and DTSTs working in field to ensure that operational factors as being reported by NIHFW conducted LEM exercises, are minimal and in addition the States should strive to provide quality leprosy diagnostic and treatment services at all health facilities” We thank the Government for the prompt response and clarification.
Why some TB patients do not come for follow-up examination? Microscopy Centre is not accessible.
MO-PHC/ANM to make alternate arrangements: Sputum samples collected at patient’s residence Centre (or) sputum smears are prepared and Microscopy Centre is not functioning.
Ensure that sputum microscopy is done and results are despatched to concerned PHC in time.
Sputum result is not entered in records at PHC.
MO-PHC to review the sputum result and ensure that results are entered in patient record with DOT provider; action is initiated based on the sputum results Adequate counselling of DOT provider at start of procedures / does not refer the patient.
Mark dates for follow up in patient record with Patient is not aware of follow up procedure.
Adequate counselling of patient at start of treatment by Patient is not aware of need for follow up Sputum cups should be supplied along with RNTCP medicine pack. DOT provider and patient should know the procedure; Patient should collect early morning sputum sample and report to Microscopy Centre where spot sample would be collected. Two samples could be given on a single visit to Microscopy Centre.
Periodic visits to patients and DOT providers by any of the health staff (MO / MPHS / ANM / STS).
STS to check follow up examinations done at MC / Sensory test for identifying nerve dysfunction

Source: http://www.damienfoundation.in/updates/update/DFIT_Update_Jan_2006.pdf

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