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Swedish International
Development Authority
(SIDA)
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Evaluation Study
of the Multi-Drug
Therapy Program in India
APPENDICES
April 1994
■■
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___________
Swedish International
Development Authority
(SIDA)
Evaluation Study
of the Multi-Drug
Therapy Program in India
APPENDICES
April 1994
Queen's University, Kingston, Ontario, Canada K7L3N6
SWEDISH INTERNATIONAL DEVELOPMENT AUTHORITY
(SIDA)
EVALUATION STUDY OF THE
MULTI-DRUG THERAPY PROGRAM IN INDIA
TABLE OF CONTENTS
SIDA Terms of Reference
Appendices
Appendix 1:
Appendix 2:
Appendix 3:
Appendix 4:
Appendix 5:
Appendix 6:
Appendix 7:
Appendix 8:
Appendix 9:
Appendix 10:
Appendix 11:
Appendix 12:
Page#
SIDA Supported Districts and Operational Data
for the MDT Program
Epidemiological Data
Performance Related to Duration of MDT Program
Selected Districts: New Case Detection Rate
Proportion of MB Positive Cases
Cumulative Incidence of Reactions
Voluntary Reporting
Leprosy Profile in Female Cases
Deformity Data: Selected Districts
Relapses
Screening in SIDA MDT Districts
Organization Showing Line of Command and Flow of Funds
1
5
7
7
8
8
9
9
10
10
11
12
Individual Reports of Team Members
Lillemor Brolin
Ranaswamy Ganapati (& Chandrakant R. Revankar)
A. Colin McDougall
Malcolm Peat
Jean Watson
15
35
45
59
65
SIDA TERMS OF REFERENCE
1993-11-02
EVALUATION OF THE MULTI-DRUG THERAPY PROGRAM IN INDIA
TERMS OF REFERENCE
Background
Sweden has been supporting the National Leprosy Eradication Program (NLEP) in India
since 1978 and the Multi-Drug Therapy (MDT) Program since its inception in 1981. These
programs have been given top priority by the Indian authorities, since leprosy is considered
a national health problem. At one time the disease affected some four million people in
India, and India is still the country with the highest number of sufferers from the disease,
but the incidence is going down and a virtual eradication of the disease may be expected.
In the highly endemic areas, 16 out of 1 000 had an active infection, but this has been
brought down to less that a tenth. MDT, which replaced the original long term Dapsone
medication, is supposed to be one of the reasons for this improvement coupled with an
effective control mechanism.
The original agreement between Sweden and India has been renewed on two occasions and
was extended to terminate in March 1994. The SIDA supported program has reached 19
districts and has been channelled through WHO. (During one period the support was
channelled through UNICEF in three districts). The MDT program is now being extended
to all districts with endemic leprosy, and the World Bank plans to enter in as a major
contributor.
Several reviews have been carried out (1987, 1989 and 1991). Although the epidemiological
effects on the whole have been excellent, there are still questions about the MDT and drug
efficiency, side effects, the organizational set up of the program in relation the Primary
Health care structure, its social impact and the situation of the leprosy cases medically
cured. The evaluation may provide answers to some of these questions.
Reasons for the Evaluation
The Multi-Drug Therapy program is important by its magnitude, by its addressing of a
national priority and by being the first of its kind in India, which motivates an extensive
evaluation. There is a wealth of experience and information within the NLEP, which needs
to be summed up, analyzed and passed on to those continuing the control program or with
services to leprosy affected.
Scope and Focus of the Evaluation
The evaluation shall comprise but not necessarily be limited to the following aspects:
the epidemiological and public health impact of the Multi-Drug Therapy program
related to control and eradication of leprosy.
the utilization of funds and the cost-efficiency of the program
the infrastructure and logistics of the Swedish program and how it may be adapted
to the epidemiological changes in each area in relation to the PHC structure.
the quality of drugs and their handling as well as side effects and their treatment
the social effects of the NLEP with respect to attitudes among the public and with
respect to community participation in the program.
the disability index, according to the guidelines of WHO, eg. the relationship between
newly detected cases and the ones with disability among those, and the prevention
of the dehabilitation of new cases in the future as well as the possibilities to
rehabilitate those physically and socially disabled.
The lesson to be learned from the NLEP for the future operation of the program. Clear
recommendations should be made on the aspects of the program, including possible other
donors for future financing.
Methodology, Evaluation Team and Time Plan
The evaluators shall review agreements, national plans and reports. Documentation from
similar projects like those of Danida Assisted National Leprosy Eradication Program
(DANLEP) shall be studied. Interviews shall be made with the respective leprosy officers
on State and District levels as well as the leprosy consultants belonging to the project.
Interviews shall also be made with field workers as well as examination of a sample from
the target group in at least three districts. (The districts shall be selected to be
representative of the leprosy situation and of the socio-economic position). This
examination may be complemented by a sample survey to test the reliability of the
epidemiological data furnished and by a laboratory control of the drugs used.
The evaluation team will comprise expertise within the following fields:
leprology, microbiology, pharmacology;
epidemiology, public and community heath;
evaluation of health and social projects;
development co-operation in the health sector and in PHC; and
disabilities in leprosy and rehabilitation.
Team members will be required to possess a solid experience and knowledge of India, as
India is a country with special characteristics with regard to the problem described.
The team leader will be responsible for contacts between SIDA and SIDA/DCO and the
team for practical purposes, distributing material, communicating questions and further
requests, organising meetings for the mission, etc. The team leader will also compile the
report from the individual contributions and be responsible for the final report in
accordance with the SIDA guidelines.
The time plan will be as follows:
The evaluation will be carried out between November 1993 and February 1994. A desk
study will proceed the mission to India, which will take place in January - February 1994,
during four weeks.
Reporting
A summary report shall be presented to the SIDA/DCO and authorities concerned in New
Delhi before the mission leaves India. The final report (following the model specified in
Reports on SIDA Evaluation Studies - A Standardized Format) shall be submitted to SIDA,
Stockholm not later than 15 March 1994. The final report shall be forwarded to SIDA in
five copies and shall be typed on an IBM-compative word processor in MS Word and be
accompanied by a diskette.
The Team leader, together with the Swedish team member, shall present the findings and
results of the evaluation at a seminar to be held at SIDA, as part of their assignment.
•••••••••
• •••
Appendix -1 (a)
SID A Supported Districts and Operational Data MDT
December 1993
SR.
NO.
DISTRICT
1 Krishna
2 Vizianagaram
3
4
5
6
7
8
9
10
Srikakulam
Vishakhapatanam
Deogarh
Baroda
Belgaum
Dharwar
Amaravati
Wardha
11 Chandrapur
12 Bombay
13 Ganjam
14 Puri
15 North Arcot
16 Tanjavur
[
17 Chengalpattu
18 Purulia
19 Varanasi
TOTAL
POPULATION
(1991
Census)
3693179
2110136
2321126
3272110
918233
3194692
3583606
3503150
2008568
1065589
1768958
9909847
3158764
3590026
4997666
4526701
4620967
2217423
4798729
65259470 if
MDT
START
DATE
10/1987
1/1983
1/1983
1/1986
1/1985
6/1984
4/1986
4/1986
2/1985
10/1981
11/1987
9/1992
3/1983
11/1985
5/1983
10/1988
4/1986
9/1982
8/1985
FINANCIAL
SUPPORT
(Years)
7
8
8
5
9
8
8
8
8
8
6
3
8
5
8
5
6
8
9
NO. OF CASES BEFORE MDT
■
MB
6541
5368
4474
3899
2483
4823
2839
3819
1988
2107
2496
3838
5171
7146
10000
6212
6424
]
6251
3645
89524
PB
’15404
18275
26266
20256
5179
7152
7608
9221
7316
6866
14725
14564
31533
24070
58351
20484
37344
21003
11338
356955
Total
21945
23643
30740
24155
7662
11975
10447
13040
9304
8973
17221
18402
36704
31216
68351
26696
43768
27254
14983
446479
% OF
MB
CASES
29.81 f
22.70 I
14.55 |
16.14
32.41
40.28
27.18
29.29
21.37
23.48
14.49
20.86
14.09
22.89
14.63
23.27
14.68
22.94
24.33
20.05
NO. OF NEW CASES
DETECTED
MB
PB
Total
5449
26973
32422
6172
23805
29977
6195
18258
24453
4168
21709
25877
5312
6406
11718
5043
11107
16150
3156
12458
15614
5506
14490
19996
2300
28017
30317
3208
29309
32517
3095
28737
31832
3806
15881
19687
7057
42926
49983
23231
7317
30548
7567
57620
65187
3576
33586
37162
66793
4977
71770
13792
45960
59752
13343
18718
32061
111039
525984
637023
% OF
MB
CASES
16.81
20.59
25.33
16.11
45.33
31.23
20.21
27.54
7.59
9.87
9.72
19.33
14.12
23.95
11.61
9.62
6.93
23.08
41.62
1743
Appendix -1 (b)
SIDA Supported Districts and Operational Data MDT
December 1993
SR.
NO.
DISTRICT
1 Krishna
2 Vizianagaram
3 Srikakulam
4 Vishakhapatanam
5 Deogarh
6 Baroda
7 Belgaum
8 Dharwar
9 Amaravati
10 Wardha
11 Chandrapur
12 Bombay
13 Ganjam
14 Puri
15 North Arcot
16 Tanjavur
17 Chengalpattu
18 Purulia
19 Varanasi
TOTAL
TOTAL (OLD + NEW) ACTIVE
CASES (OLD + NEW)
CASES ON RECORD
____ BROUGHT ON MDT
MB
Total i|
PB
Total
MB
PB
11990
42377
54367
11079
36519
47598 If
11540
42080
53620
9341
28610
37951
11025
48678
59703
9806
24609
34415
7265
32767
40032
6890
30345
37235
7795
11585
19380
7795
11585
19380
9866
18259
28125
9737
17800
27537
5995
20066
26061
3964
16362
20326
8525
23711
32236
8093
23259
31352
4413
37214
41627
4413
37214
41627
5315
36175
41490
4958
29308
34266
5519
43462
48981
5086
39405
44491
7644
30449
38093
7019
33276
26257
11415
51017
62432
10732
44432
55164
14924
46840
61764
14769
37954
52723
17580
115958
133538
14384
67783
82167
9671
54070
63741
8669
45222
53891
11401
104137
115538
10034
69127
79161
20043
63954
18700
83997
40635
59335
45624
|
16989
30056
47045
16665
28959
198915
852855 1051770
182134
655385
837519 |[
• •••
• •••
% OF MDT COVERAGE
MB
92.40
80.94
88.94
94.84
100.00
98.69
66.12
94.93
100.00
93.28
92.15
91.82
94.02
98.96
81.82
89.64
88.01
93.30
98.09
91.56
PB
86.18
67.99
50.55
92.61
100.00
97.49
81.54
98.09
100.00
81.02
90.67
86.23
87.09
81.03
58.45
83.64
66.38
63.54
96.35
76.85
Total
87.55
70.78
57.64
93.01
100.00
97.91
77.99
97.26
100.00
82.59
90.83
87.35
88.36
85.36
61.53
84.55
68.52
70.64
96.98
79.63
••••••••••
• •••
Appendix -1 (c)
SI DA Supported Districts and Operational Data MDT
December 1993
SR.
NO.
DISTRICT
1 Krishna
2 Vizianagaram
3 Srikakulam
4 Vishakhapatnam
5 Deoghar
6 Baroda
7 Belgaum
8 Dharwar
9 Amaravati
10 Wardha
11 OChandrapur
12 Bombay
13 Ganjam
14 Puri
15 North Arcot
16 Tanjavur
17 bhengalpattu
18 Purulia
19 [Varanasi
[TOTAL
CASES COMPLETED MDT IT
MB
7230
7031
7588
5375
4794
7342
3369
5822
3128
3657
3801
3510
8029
9870
10586
4303
6938
12745
11282
126400
PB
30506
24943
21697
25896
6671
15640
15860
17386
32654
24710
36222
19842
40404
30340
51135
10709
57400
35046
23907
520968
Total
37736
31974
29285
31271
11465
22982
19229
23208
35782
28367
40023
23352
48433
40210
61721
15012
64338
47791
35189
647368
% OF CURED CASES
MB
65.26
75.27
77.38
78.01
61.50
75.40
84.98
71.94
70.88
73.75
74.73
50.01
74.81
66.82
70.66
46.63
69.14
68.45
67.69
69.39
PB__
8353
87.18
88.16
85.33
57.58
87.86
96.93
74.74
87.74
84.32
91.92
75.56
90.93
79.94
75.31
23.57
83.03
86.24
82.55
7950"
Total
79.28
84.25
85.09
83.98
59.16
83.46
94.60
74.02
85.95
82.78
89.96
70.17
87.79
76.26
74.44
27.75
81.27
81.79
77.13
77.29
TOTAL CASES DISCHARGED
SINCE BEGINNING
MB
PB
Total
11513
48176
59689
17482
65604
83086
9585
43394
52979
7920
40457
48377
7117
9452
16569
9068
17832
26900
5389
19512
24901
7948
22566
30514
2393
8094
10487
5082
35258
40340
4837
41295
46132
3565
12516
16081
9700
47280
56980
12299
42897
55196
15253
111122
126375
8627
51038
59665
109603
9854
99749
16792
63408
80200
29401
44953
15552
179976
809051
989027
BALANCE OF CASES ON
RECORD
MB
PB
Total M
4012 j
1597
2415
1213
1295
2508
1084
1130
2214
656
1229
1885
1815
996
2811
849
426
1275
606
1160
554
2007 [
1048
959
1904 |
389
1515
1006
269
1275
754
2167
2921
2879
3773
6652
1715
3737
5452
3943
6568
2625
7163
2327
4836
1350
3187
4537
1547
4388
5935
3499
3555
7054
1437
655
2092 I
27659
41766
69425 H
Appendix -1 (d)
SIDA Supported Districts and Operational Data MDT
December 1993
SR.
NO.
DISTRICT
1 Krishna
2 Vizianagaram
3 Srikakulam
4 Vishakhapatnam
5 Deoghar
6 Baroda
7 Belgaum
8 Dharwar
9 Amaravati
10 Wardha
11 Chandrapur
12 Bombay
13 Ganjam
14 Puri
15 North Arcot
16 Tanjavur
17 Chengalpattu
18 Purulia
19 Varanasi_______
fTOTAL
CHILD CASES AMONG
NEW CASES
No.
%
10727
32.08
4859
16.20
7413
30.31
8179
31.60
I
1480
2322
3675
3373
10267
8647
8601
6623
14540
9323
21387
12488
25751
10685
5599
175939
• ••
12.60
14.38
23.53
16.87
33.80
26.59
27.02
33.64
29.08
30.52
32.81
33.60
35.88
17.88
17.47
26.62
GRADE II DEFORMITY
CASES AMONG NEW
No.
__
1117
3.44
1790
5.97
705
2.88
813
3.14
1183
10.09
1131
7.00
533
3.41
770
3.85
53
0.17
98
0.60
101
0.31
1244
6.32
1975
3.95
301
0.98
3115
4.77
434
1.16
1445
2.01
3147
5.26
1537
4.79
3.38 [
21492
SMEAR POSITIVE
CASES AMONG NEW
No.
%
1759
7526
N.A.
684
N.A.
1883
1087
842
1916
3208
2131
3806
1355
474
2968
1969
1637
1587
3282
38114
• •••
5.40
25.10
N.A.
2.64
N.A.
11.66
6.96
4.21
6.32
9.86
6.69
19.33
2.71
1.55
9.16
5.29
2.28
2.65
10.23
6.34
••••••
• •••
• ••••
Appendix - 2 (a)
Epidemiological Data
December 1993
SR.
NO.
1
DISTRICT
Krishna
2 Vizianagaram
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
Srikakulam
Vishakhapatanam
Deogarh
Baroda
Belgaum
Dharwar
Amaravati
Wardha
Chandrapur
Bombay
Ganjam
Puri
North Arcot
Tanjavur
Chengalpattu
Purulia
Varanasi
tn
REGISTERED PREVALENCE RATE
_________ PER 1000
Before MPT
Current
%
Estimated
Regd.
Change
11.30
9J0
1.08
88.13
16.00
13.20
1.19
90.98
16.20
15.70
0.95
93.95
9.30
9.37
0.58
93.81
20.00
10.88
3.06
71.87
7.80
4.31
0.39
90.95
6.00
3.47
0.32
90.78
4.80
4.40
0.57
87.04
6.85
5.00
0.95
81.00
10.09
9.68
1.19
87.71
12.23
12.14
1.65
86.41
3.50
1.86
0.67
63.98
15.57
13.57
1.73
87.25
12.80
10.50
1.83
82.57
18.35
15.25
1.52
90.03
16.00
6.50
1.00
84.61
13.60
12.10
1.28
89.42
14.69
14.69
3.06
79.17
10.00
6.40
0.44
93.12
NEW CASE DETECTION RATE
PER 1000
Before
Current
%
MPT
Change
2?45
0.67
72.65
1.49
0.68
54.36
1.31
0.48
63.36
1.09
0.67
38.53
5.38
1.89
64.87
0.86
0.41
52.33
0.63
0.33
47.62
0.98
0.49
50.00
2.11
1.51
28.44
2.96
1.81
38.85
2.99
2.64
11.70
0.70
0.70
0.00
1.80
1.75
2.78
1.13
1.43
26.54
1.09
0.71
34.86
0.56
0.85
51.78
2.18
0.81
62.84
2.12
1.16
45.28
2.66
0.26
90.23
MB RATE (%)
AMONG NEW CASES
Before
Current
%
MPT
Change
19.67
13.70
3(135
26.42
23.50
20.21
15.75
18.51
17.52
24.87
13.45
45.92
37.67
45.17
19.90
32.53
30.86
5.13
23.01
21.16
8.04
5.49
24.52
346.60
7.04
5.18
26.42
12.86
6.00
53.34
9.76
7.73
20.79
17.85
17.85
0.00
19.81
15.91
19.68
27.98
19.06
31.88
28.02
54.70
12.68
13.56
8.90
34.36
7.81
8.44
8.07
41.23
26.58
30.27
35.81 ]
50.32
32.30
cn
Appendix - 2 (b)
Epidemiological Data
December 1993
SR.
NO.
DISTRICT
1 Krishna
2 Vizianagaram
3 Srikakulam
4 Vishakhapatanam
5 Deogarh
6 Baroda
7 Belgaum
8 iDharwar
9 Amaravati
10 Wardha
11 Chandrapur
12 [Bombay
13 [Ganjam
14 I Puri
15 North Arcot
16 panjavur
17 Chengalpattu
18 Purulia
19 Varanasi
DEFORMITY RATE ( Gr. 2)
AMONG NEW CASES
Before
%
Current
MDT
Change
3.52
3.19
<138
7.43
2.42
67.43
4.85
1.88
61.24
7.22
2.89
59.97
19.59
2.58
86.83
8.61
4.91
42.97
4.28
3.13
26.87
3.21
2.95
8.09
2.59
0.39
84.94
0.63
0.00
100.00
0.81
0.71
12.35
5.35
5.35
0.00
16.18
1.63
89.93
0.54
0.79
46.30
6.71
1.97
70.64
8.56
2.31
73.01
3.19
1.12
64.89
3.29
1.74
47.11
13.29
11.18
15.88
CHILD RATE
____AMONG NEW CASES
%
Before
Current
MDT
Change
22.62
32.43
43.37
74.40
18.75
74.80
28.63
26.68
6.81
23.97
28.53
19.02
11.58
14.77
27.55
9.48
18.71
97.36
18.46
26.24
42.14
12.07
20.63
70.92
9.73
164.50
25.74
22.01
26.66
21.13
9.34
27.03
189.40
37.61
37.61
0.00
20.29
36.24
78.61
5.12
30.99
505.27
30.44
42.44
43.36
49.36
42.78
13.33
5.08
47.59
836.81
17.90
21.04
17.54
8.92
13.71
53.69
•••••••
• ••••
• ••••
• •••
Appendix - 3
Performance Related to Duration of MDT Program
SR.
NO.
INDICATOR
DURATION OF MDT PROGRAM
II
6-8 YEARS (8 DISTRICTS)
% Change I Before
Current % Change
< = 5 YEARS (2 DISTRICTS)
1 Registered
Prevalence Rate /1000
2 New Case
Detection Rate /1000
3 MB Proportion
%_______________
4 Child Proportion
%_______________
5 Deformity Proportion
%
> = 9 YEARS (9 DISTRICTS)
Before
Current
% Change
077
-89.06
7?62
(192
-87.93
Before
11.97
Current
f04
T43
-88.05
0.77
0.74
-3.90
2.18
0.77
-64.68
1.76
0.94
-46.59
16.71
14.67
-12.21
24.23
15.1
-37.68
25.09
17.57
-29.97
40.70
39.45
-3.07
11.47
30.8
168.53
20.16
27.82
38.00
6.21
4.27
-31.24
3.75
2.18
-41.87
10.55
1.75
I MONO
PB
CASES
LESION
CASES
TOTAL
NCDR /
PB
NCDR/
MONO
NCDR/
1000
114
04?
MB
NCDR/
1000
0J3"
467
808
0.33
0.49
1.52
0.07
0.25
0.37
Appendix - 4
Selected Districts: New Case Detection Rate
SR.
NO.
DISTRICT
TOTAL
NEW
CASES
_______
1 llBaroda
2 feelgaum
3 Dharwar
4
5
6
7
Amaravati
Ganjam
Puri
Varanasi
][tqtal
I
1325
1181
1725
3046
5518
5146
1269
19210
MB
CASES
409 M
916
250
423
931
1308
158 II
878
981 I
410 ||
3509 |[
2888
4640
”
981
2717
4165
1779
859 ______ 90
15701
6956
1000
1.75
1.43
0.26
oeF
0.12
0.08
0.28
0.27
_0.09
0.15 (
1000
0?28
1.44
1.46
1.16
0.18
(166
CL040.13
0.23
0.59
0.86
1.16
0.02
0.29 |
00
Appendix - 5
Proportion of MB Positive Cases
SR.
DISTRICT
NO.
FlKrishna
2 Baroda
3 Belgaum
4 Dharwar
5 Gan jam
6 Puri
7 North Arcot
8 Chengalpattu
9 | Varanasi
BEFORE
MPT
3J90
13.89
11.96
2.10
7.05
2.80
9.60
3.88
11.78
"[[TOTAL
3.13
CURRENT
2.95
12.30
6.50
5.60
0.52
0.29
2.14
1.77
0.55
T34
%
CHANGE
-24.36
-11.45
-45.65
166.67
-92.62
-89.64
-77.71
-54.38
-95.33
-67.18
Appendix - 6
Cumulative Incidence of Reactions
SR.
NO.
||
DISTRICT
Baroda
pharwar
•
M/ardha
4 Chandrapur
5 phengalpeth
6_______
Varanasi
[[TOTAL
I
TOTAL CASES NO. OF PATIENTS
OFMDT
WITH TYPE I & II
REACTION
27537
382
31352
529
34266
238
44491
152
79161
58
45624 ___________ 1601
262431
2960
%
1.39
1.69
0.69
0.34
0.07
3.51
TT3
Appendix - 7
Voluntary Reporting
SR.
NO.
TOTAL
NEW CASES
DETECTED
32422
24453
25877
11718
16150
15614
19996
30317
32517
31832
37162
71770
59752
32061
441641
DISTRICT
1 Krishna
2 Srikakulam
3 Vishakhapatanam
4 [Deogarh
5 Baroda
6 Belgaum
7 Dharwar
8 Amaravati
9 Wardha
10 Chandrapur
11 Tanjavur
12 Chengalpattu
13 Purulia
14 ||Varanasi________
][TOTAL
VOLUNTARY
CASES
12708
12982
9567
7994
9696
3847
9001
9482
12926
13358
8323
16318
17071
11636
154909
%
39.20
53.09
36.97
68.22
60.04
24.64
45.01
31.28
39.75
41.96
22.40
22.74
28.57
36,29
35j08
Appendix - 8
Leprosy Profile in Female Cases
SR.
NO.
DISTRICT
TOTAL
NEW CASES
1 Vishakhapatanam
2 Baroda
3 ||Wardha
fTOTAL
25877
16150
32517
74544
][
FEMALE
CASES
AMONG NEW
CASES
10861
7056
_______ 9532
27449
% OF
FEMALE
CASES
41.97
43.69
29.31
36132
Appendix - 9
O
Deformity Data: Selected Districts
SR.
DISTRICT
DEFORMITY (GRADE 2) CASES IN OLD AND NEW LEPROSY CASES
NO.
1 <rishna
2 Srikakulam
3
v'ishakhapatanam
4
Deogarh
5
3aroda
6
3elgaum
7
Dharwar
8
Amaravati
Tanjavur
12 Chengalpattu
13
Purulia
| 14Jvi'aranasi
F
II
CUMULATIVE
NCDR OF
TOTAL
P R. OF
NEW
DEFORMITY
(OLD +
DEFORMITY
CASES
/1000
1499
477
242
1838
1156
1187
982
25
1075
219
5268
4570
624
1504
20666
9 Wardha
10 Chandrapur
11
OLD
CASES
][rOTAL
HTF
030
705
0.30
0.25
1.28
0.35
0.15
0.22
0.03
0.18
0.06
0.00
0.31
1.42
0.32
032"
813
1183
1131
533
770
53
98
101
434
1445
3147
1537
13167
NEW)
2616"
1182
1055
3021
2287
1720
1752
78
1173
320
5702
6015
0.71
0.51
0.32
3.29
0.72
0.48
0.50
0.04
1.19
0.18
1.26
1.30
3771
1.70
3041
0.63
33833
osF
Appendix -10
Relapses
DISTRICT
MDT
RELAPSE
TOTAL
142
168
163
66
1 [Krishna
2 BSrikakulam
3 k/ishakhapatanam
4 Baroda
MONO
RELAPSE
TOTAL
148
354
158
110
5
3elgaum
116
14
6
Wardha
65 U
64
7
Tanjavur
10
103
8
Chengalpattu
438
551
3urulia
10 [paranasi________
406
1334
2946
___ 0
9
][TOTAL
)[
• •••
106
1570
• •••
• ••••
Appendix -11
Screening in SIDA MDT Districts
SR.
NO.
DISTRICT
1 llKrishna
2 Deogarh
3 Dharwar
4 Amaravati
5 Chandrapur
6 Varanasi
TOTAL
H
I
TOTAL NO. OF REGISTERED CASES
ON RECORD BEFORE SCREENING
MB
PB___
Total
||
28036 If
6576
21460
11067 |
2634
8433
13263 |
3916
9347
10487 |
2393
8094
2642
19737 I
17095
17025 |
3645
13380
21806
77809
99615 f
ACTIVE CASES AFTER
SCREENING
MB
PB
Total
6541
15404
21945
2483
5179
7662
3819
9221
13040
1988
7316
9304
2496
14725
17221
11338
3645
14983
20972
63183
84155
DELETION DURING
SCREENING
MB
PB
Total
35
6056
6091
151
3254
3405
97
126
223
405
778
1183
146
2370
2516
____ 0
2042
2042
834
14626
15460
% OF
DELETIONS
21.73
30.77
1.68
11.28
12.75
11.99
15.52
APPENDIX - 12
Organization Showing Line of Command and Flow of Funds
FUNDING AGENCY
MINISTRY OF HEALTH
FLOW OF FUNDS
DGHS
WHO
DDGHS
i
i
\\
X
i
DHS
I
I
1
NLEP CONSULTANT
SLO
DLS
DISTRICT
DLO
COLLECTOR SECRETARY
CHAIRMAN
DLO
Responsible at
District Level
CONSULTANT
LEPROLOGIST
(MDT)
CONSULTANTS
(Surgical,
Physio Tech)
MO
Responsible at District Level
PT and NMS
Responsible at Sector Level
PMW
Responsible at Village Level
INDEX
CONTROL
12
CO-ORDINATOR
---- - FLOW OF FUNDS
• •••
• •••
Project
Document
WHO/HQ
Annual Plans
of Action
WHO/SEAR
SIDA
Allotment
Notification
PCD
SEAR Leprosy
Endemic
Countries
MO-LEP
BUD
I
Technical
Clearance
Finance &
Budget
Technical
Consultations
Authorize WR
Bangladesh
Bhutan
Indonesia
International/
National
Consultants
Maldives
Fellowships
Myanmar
Training/
Workshops
Seminar
India
Nepal
Sri Lanka
Thailand
Monitoring &
Evaluation
GOI
DDG/LEP
WR, INDIA
DSP
MSU
Purchases &
Supplies
Local
International
Sticker No.
PDM Cards
Abbreviations used
WHO: World Health
Organization
SEAR: South-East
Asia Region
SIDA: Swedish
International
Development Agency
WR: WHO
Representative
GOl: Government of
India
DDG: Deputy
Director General
LEP: Leprosy
MO-LEP: Medical
Officer (Leprosy)
PCD: Provention &
Control of Diseases
DSP: Director,
Support Programme
BUD: Budget
MSU: Medical
Supply Unit
L. BROLIN
1.
THE ORGANIZATIONAL SET-UP
LB’s Comments: This is a summary of my notes and I suppose that Malcolm has a lot more
to add. My observations and conclusions are but one input in the discussion within the
team, and might very well be questioned if other team members have made other
observations.
The Pros and Cons of a Vertical Program
The NLEP has been carried out as a strictly vertical program with a special cadre of staff.
There seems to be a mutual understanding among the Ministry of Health and Family
Welfare, WHO, UNICEF, and representatives of the NGO-sector that the verticality of the
program has been necessary up till now.
The informants consider that the program would have been much less efficient if it had
been integrated in the primary health care system. The main reasons being that leprosy and
care of leprosy patients is considered issues of lowest priority within the Ministry of Health
and Welfare. Consequently, the Ministry would not have provided enough resources to
attain the goal of eradication of leprosy if earmarking had not existed. "The majority of the
resources would have been used for family planning" was a common opinion among the
informants.
The informants further stressed the difficulty to find health care personnel who would like
to work with leprosy if they did not receive incentives as this kind of work has a very low
status in the Indian society.
Another consideration was that the primary health care system as such is of a very
rudimentary quality. Some informants expressed this situation drastically; "There has been
no primary health care to be integrated into". Such views are common. In a Conference held
in 1991, Professor Deodhar from Pune stated for example that the rapid expansion of the
health services infrastructure has implied considerable loss of quality, capability and
effectiveness.This has in turn resulted in a lost credibility and poor use of health services.
(Document from IAL National Workshop at Karigiri, 1991, p 8-9). Similar views were
expressed by SIDA staff in India.
One negative consequence of having a vertical program has often been mentioned; the
stigma of leprosy and of the leprosy patients increases. Patients do simply not want to be
identified as leprosy cases but as any ill person. Many have experienced that when
neighbours and relatives observe that somebody visits the special leprosy clinic, or is visited
by a special leprosy worker, then the person is provided a long-lasting stigma.
17
There is a general worry about the future development of the vertical program, and this
worry often refers to the situation of the staff. The staff and the equipment was at the
beginning supposed to be transferred from one district to another with the eradication of
leprosy cases, as only the high-endemic areas in fact needed a strictly vertical set-up.
However, these plans did not function in reality, the staff did not want to move. Instead
more staff was employed. As a consequence of this development there is now a considerable
large number of persons who need to be retrained. Another problem to be solved is the
issue about incentives. The staff claims a continuation of the same conditions.
The Role of WHO
The major role of WHO within the NLEP program is to provide technical advice.
This has implied focus on detecting cases, providing drugs and giving medical treatment.
Surveys of households and examination of families in endemic areas have implied that a
large percentage of all leprosy cases have been detected. Using MDT as main strategy for
control of leprosy has turned out to be very efficient, and in this respect the technical
guidance of WHO has been of utmost importance. At the same time both the verticality and
the medicalization of the program have been reinforced by the presence of WHO, as such
a view is also predominant within the Ministry. Had an organization with a different
approach been involved in the implementation the program would have developed
differently. The Danlep commitment is but one such example.
SIDA chose WHO as channel for its financial support already from the beginning in 1979.
WHO was developing drugs for better treatment of leprosy, and the organization had
experiences of special research and training. The main reason for SIDA’s choice was
however WHO’s special privileges regarding importation of drugs and equipment. (From G.
Kronvall. Letter to SIDA, January 7, 1984)
The general opinion among the informants is that WHO’s role as financial channel could
have been carried out through any private company or public organization. The strength of
WHO is not on the administrative level but based on a highly professional, medical, manner
to implement programs.
WHO has also played a pertinent role in designing and carrying out four independent
evaluations of the program. Furthermore, WHO-consultants have been involved in the
training and supervision of certain staff categories and has supported the 40 leprosy
consultants, financed by SIDA, with training and supervision. These consultant are even
most often (wrongly) called WHO-consultants.
SIDA has however criticized WHO for not following up the SIDA support and for lack of
reporting. The Ministry has been the subject of the same criticism, although it has turned
out that agreements often have been vaguely formulated. The criticism was particularly
strong in the mid-1980s.
18
SIDA’S Role
SIDA’s role has been that of financier, while WHO has played the role of the implementor.
The support has mainly been used for purchase of drugs, which originally was not the aim.
SIDA has tried to change this a number of times but obviously not succeeded.
SIDA has also continuously suggested financing a project-coordinator. The aim of such a
post was officially to improve the information flow and the monitoring. There is a lot that
also points towards SIDA wanting more influence and control of the support. As the Indian
regulations do not allow foreigners in the Ministries SIDA came up with different
alternatives throughout the co-operation. However, no solution has been considered
satisfactory.
SIDA has questioned the verticality of the program during the years of support and has
suggested a broadening of the contents, suggestions that have not been taken into
consideration. This, in turn, may be explained by the fact that SIDA is known as a very
flexible donor and that statements made by SIDA or SIDA consultants are perceived as
unconditioned suggestions.
If SIDA had wanted to influence the design of the program more it would have been more
fruitful to use other models, for example the Danlep approach, which could be defined as
a bilateral project. Danlep is actively involved in the program but has considered it
necessary also to work with other actors outside the very program.
Such an approach would also have been more cost-efficient, as the administrative costs are
estimated at approximately 8%. WHO has claimed 13% of the total sum of the
SIDA-support for overhead costs, a sum that has often been criticized to be too high and
was one reason why SIDA searched for alternative channels in mid- 1980s.
It is also worthwhile raising the question if the SIDA support had been more efficient had
it been channelled directly to the states or the districts.
19
2.
SOCIAL IMPACT OF THE PROGRAM
LB’s Comments: The following pages are supposed to take up the question about social
impact in the TOR, page 2. Some questions that I have in mind are:
* Has knowledge about leprosy been changed?
♦
Have attitudes towards leprosy changed and the fear of leprosy vanished?
* Do people behave differently towards leprosy now?
* Have patients been involved in the design of the program
* Has the socio-economic situation for (ex-) patients changed?
My disposition of the text is approximately like this:
a. to define the problem
b. describe measures within the government program
c. actual results/changes of the program
d. SIDA’s policy and commitment to the issue
As these conclusions are only based on some interviews and documents I would be happy
if they can be corrected and completed by the rest of the team. Has Jean for example got
any impression about measures to improve the socio-economic situation of the patients?
* * * * * * * * * * * * *
Little Involvement from Social Scientists
That leprosy is not only a medical problem but has also many social dimensions is
undisputed. As long as medical technology had little to offer leprosy was mainly a social
problem with little involvement from the medical community. The problems of existing
patients were tackled by non-medical sectors.
When the dapsone therapy started and later was followed by multidrug therapy the picture
changed, and leprosy became an issue for medical experts. The major problem became how
to detect and how to treat leprosy patients. However, even if the combination of drugs was
the focus of the program it has not been possible to exclude social problems completely.
Such problems often have far more serious consequences than the medical problems as the
perception and fear of leprosy is deeply rooted in the society.
In order to bring social scientists into the field a centre for social science research on
leprosy was created in Wardha in 1985. Social scientists were invited to seminars in order
to encourage a cooperation between them and leprologists.
20
Despite these efforts there are very few traces of sociological or anthropological influence
in the government program, a natural consequence of the vertical, narrow and efficient
set-up of the program. (R. K. Mutatkar, in Document from The National Workshop, March
1991, p 14-15). The lack of involvement of social scientists is obvious in almost all program
documents, guidelines and publications about facts and figures.
The social dimension of leprosy has rather become a rest category to different medical
aspects. Different types of social issues are packed together and there seems to be little
correspondence between policy and practice. The definition of health education is such a
case.
Health Education in Policy and Practice
The official aims with health education are:
«
*
*
to create awareness on the availability of free treatment
to develop knowledge on the nature of leprosy, its amenability to cure, recognition
of early signs of the disease and prevention of deformities
to promote social integration of the leprosy patients and
to promote community commitment to the program
In order to fulfil the listed objectives an elaborated strategy is needed. Even if it is
proclaimed that health education is central to the program, in practice it continues to be a
peripheral activity consisting of films, pamphlets, and posters. (See for example Plan of
operation for SIDA/WHO assistance, April-December 1991 and Health Education Activities
during 1992-93).
With the exception of set of posters or pamphlets, there is little assistance from the central
level to states and districts. (According to the document from 1993 mentioned above 25%
of the provided amount is used for films, slide projector etc, 25% for creating public
awareness, 25% on posters, banners, and photographs and 25% for other activities). How
activities are carried out and what impact they have is very much related to local initiatives
and NGOs, and there is probably a considerable variation between states and districts.
According to most of the informants the impact of the health education implemented by the
government machinery is negligible. The impact of campaigns like "leprosy is curable" is for
example uncertain. In 1986 71% of the persons interviewed and in 1991 72% believed that
leprosy is curable. However, the perception of the spread of the disease may have changed.
In 1986, 52% thought that leprosy does not spread easily. In 1991 this figure had increased
to 59%. (From The Independent Evaluations) 1991).
21
Tackling such a problem as stigma is still more difficult as this means changing traditional
values. To what extent such changes have occurred is also difficult to know, and the
independent evaluations do hardly give any reliable answers. The percentage of leprosy
patients living together with their families was just as high in 1991 as in the mid-eighties, i
e more than 90%. A question about the inheritance introduced in the latest evaluation
showed that 57% thought that the disease is not inherited, while 20% thought it was.
Different studies have shown that many persons have a strong fear and suspicion about the
disease and believe that the disease is caused by sexual promiscuity, by visiting ancestors
banned by their sins or by something else that is inexplicable.
Yet, there is a belief within the program that only "true facts" are presented, stigma will
softly and suddenly vanish, and give way for rational attitudes and behaviours. (See for
example Duggal et al, 1988, page 10). One precondition for such a development is however
that the community is involved, and that patients are listened to. This is not the case for the
moment.
There are many testimonies of patients who find themselves devalued, discriminated,
insulted, and excluded by the society through stigmatization. And there are many with severe
constraints in schooling, employment, marriage, and old age. However, these experiences
have not been utilized in the design of the government program.
This reflects the one-way relation within the program and the lack of involvement of the
patients themselves. It also reflects the lack of involvement of social scientists, educators and
social workers in the design and implementation of the program and is a sharp contrast to
projects implemented by NGOs and Danlep.
Participatory Methods - Left to NGOs
The program has been designed as a vertical and thereby narrow program. Such a design
does not embrace community participation or social actions. The philosophy of the program
is that by delivering adequate drugs leprosy - and thereby also prejudices towards the
disease - will be eradicated.
The training of the government program staff is based on the perception that both patients
and community are receivers of service. This has often been criticized. Dr Raja, Madurai
Institute of Social Work has for example argued that schools of social work have to include
intercommunication methods.
In the strategies used by NGOs and other organizations social action and community
participation are inherent parts. Danlep is an
example of an agency that has chosen to work together with both program staff and groups
outside the program; teachers’ organizations, women’s organizations, youth organizations,
and local religious bodies. Traditional health workers like dais and anganwadi workers
function as voluntary barefoot doctors. Furthermore, Danlep makes efforts to involve staff
from the primary health care institutions.
22
Different types of communication methods and actions are used by Danlep, Unicef and
NGOs, depending on local traditions.
"The point is not that a single message is being communicated to a given receiver, rather
it is that a much wider communication is taking place, with multiple media, a continuing and
dynamic exchange of ideas, experiences, views, of sharing and a constant feedback, all of
which energize and enrich the anti-leprosy program, making it unique". (U. Butulia. No
stone unturned, Danlep, 1992.)
SIDA Urged Better Health Education
Since the beginning of the SIDA support the organization has expressed great results from
the health education in the program. The aim was formulated as "creating individual and
community awareness of leprosy". (From Preparation document for the agreement during
1984/85-1988/89)
SIDA did not entered upon how such a health education was to be carried out by
government staff, but has continuously stated that the health education was a weak part of
the program.
One of the reasons for considering to replace WHO with Unicef in the mid-eighties was that
SIDA was unsatisfied with the manner WHO handled health education. The negotiations
ended by a Unicef commitment in three of the districts, and that SIDA financed a study
about knowledge, attitudes and behaviours related to leprosy.
If it also resulted in more or better health education and community participation in the
three districts has not been possible to verify. In Unicef s budget about 1.5% was allocated
to health education.
It is however obvious that SIDA could not influence the general policy for health education
in the program.
In the project document produced for the agreement 1990/91-1992/93 SIDA was asked to
provide special funds to use folk-media as the health education earlier largely had aimed
at urban and literate population.
No Stress on Community Participation from SIDA
In the late 1970s the Indian leprosy program was presented to SIDA as different from
programs in other countries - it was a community oriented project. However, "community
oriented" simply meant that the data was collected in a way that epidemiological analyses
would be possible - not that the program aimed at community participation.
"The effect of the intensive treatment is studied not only in the individual patient but also
using epidemiological parameters in order to measure the degree of elimination of the
infectious loads in the community" (Kronvall, Memo December 1979).
23
In the original project document the main aims were expressed as
a) using different drugs under controlled conditions,
b) providing the national leprosy program with a special adhesive tape, and c)
financing locally available equipment. Special teams were suggested for monitoring
and evaluating the results. Health education should be given during surveys and the
intensive treatment period "for detection and regular treatment of bacteriologically
positive cases”.
Consequently, it was made quite clear that community orientation or community
participation was no integral part of the program. SIDA suggested that the program be more
community oriented, but no changes were made. SIDA obviously accepted this, and with the
exception of the period 1984-1985 community participation has not been an issue SIDA has
stressed.
24
3.
THE GENDER PERSPECTIVE
LB’S Comments: This is my contribution to question 5 in our model. I think that this part
could come in under the epidemiological description of the medical impact of the program.
Which categories have been reached and which have not? Is there a gender difference?
(beside geographical, age...) If so, how could this be explained and what changes are
necessary within the program?
Why More Men Than Women?
The majority of persons reporting to the program are men. WHO researchers suggest that
this is simply because the risk of developing leprosy is lower for women than for men. This
is however an explanation to be questioned. Conventionally, all para-medical leprosy
workers have been men. Considering existing norms and values in many of the Indian states
this must be seen as a severe constraint for reaching women. Social norms do not allow
women to expose their bodies to men. Moreover, women are brought up to ignore illnesses.
It can also be argued that even if the risks for leprosy are less for women than men the
disease should not only be the concern of men, and women have the same right to
knowledge about the disease.
Secondly, many women who suffer from leprosy have made cruel experiences being thrown
out of their homes when the husbands have detected the disease. Thirdly, the possibility of
early detection in a child is increased if women are involved. Fourthly, much of the
community life is carried on through the women.
In some Danlep-districts a number of efforts have been made to involve both women and
men, girls and boys. Women and girls have been trained to detect leprosy. In some places
it has turned out that women do not want to be singled out, in other places religious groups
or women groups have been active.
The leprosy workers in the Danlep districts, although very much part of the system, have
adopted a different and carefully considered approach; that of informing, involving and
empowering the entire community. A first step for them has been to become part of the
community, gradually blurring the distinction between the patient and the doctor, the healer
and the healed.
Where there is a lack of confidence, especially among the women, the leprosy workers reach
them through the existing community structures such as the Mahila Mandals, religious
groups or through more formal structures such as the Anganwadis, PHCs, vocational training
centres or institutions of learning. ( From A. Butalia. The story within the story, p 12,
Danlep, 1992).
25
SIDA’S Commitment
A general goal of all SIDA support is that it should enhance and empower both women and
men. In order to know to what extent this requirement is fulfilled SIDA generally
recommends gender aggregated statistics. This has also been the case with NLEP.
In the project document prepared for the last agreement (1990/91-1992/93) GOI promised
to modify the information system to obtain gender-wise statistics. However, according to the
design of annual and monthly reporting presented in the guidelines 1992 no gender-wise
statistics is required. So far, such statistics has only been presented for five districts. In the
last agreement it was also stated that a cooperation with women’s organizations was to take
place, but the team could not get any information about the progress.
SIDA has further earmarked resources for a seminar on women and leprosy. Such a seminar
has not yet been carried out.
Since 1984 SIDA has kept recommending that the program includes female health workers
in the leprosy team. The aim has been to increase the rate of detection of female leprosy
cases at an early stage of the disease. Swedish consultants were well aware that many
problems had to be solved in relation to female workers, but insisted in such a change. (In
some districts a single woman living in a remote area without family relations will for
example easily loose prestige and status. Life could be very difficult for her).
In the last agreement GOI assured that efforts were to be made, but yet there are still very
few female paramedical workers in the government program. The main reasons given from
the management of the program are hardly credible. The development rather shows that
neither WHO nor the Ministry consider lack of female paramedical workers as any serious
constraint for the program. Consequently, they do not consider it worth while to make any
strong efforts to change the situation.
In summary, SIDA’s recommendations have not been followed-up by WHO or the
government. The activities have so far been gender-blind. The Danlep experiences show
however that other approaches both are possible and fruitful.
26
PERSON’S MET
Ministry of Health and Family Welfare
Dr. Mittal, Director General, NLEP
WHO
Dr N K Shah, WHO representative to India, New Delhi
Dr P W Samdup, Medical Officer/Lepra, New Delhi
Dr M J George, National Program Officer, New Delhi
Dr Pattanyak, Acting Director, PCD, Searo, New Delhi
Mr A K Mitra, Budget Officer, Searo, New Delhi
UNICEF
Mrs. Geeta Athreya, Project Officer, Health Communications, N. Delhi
Dr. Tewabech Bishaw, Project Officer Health, New Delhi
Dr. L.N. Balaji, Project Officer Community Health, New Delhi
Mrs. Ann-Lis Svensson, Project Officer, New Delhi
SIDA
Mrs. Inese Zalitis, former health program officer in New Delhi
Mrs. Gudrun Hubendick, former health program officer, Stockholm
Mrs. Ingrid Cornell, present health program officer, Stockholm
Mrs. Gunilia Essner, present health program officer, New Delhi
Mr. Jan-Olov Agrell, Head of DCO, New Delhi
Mrs. Rita Sarin, Advisor, Women’s program, New Delhi
SIDA Consultant
Mr. Gabor Tiroler, International Child Health Unit (ICH), Uppsala
Danlep
Mr. Anthony T D’Souza, Associate Corrdinator, New Delhi
The Leprosy Mission
Dr. Cornelius Walter, Director, New Delhi
Leprosy Consultants:
Dr R Ganapati, Director Bombay Leprosy Project, Bombay
Dr CR Revankar, Deputy Director, Bombay Leprosy Project, German Leprosy Relief
Association, Bombay
27
REFERENCES (Documents Read by L.A.B.)
General NLEP
National Leprosy Eradication Program; Appraisal Report and Project Proposal, Oct 1984,
DANIDA
Leprosy Status Report 1985-86
Ministry of Health and Family Welfare, New Delhi 1986
Leprosy Status Report on Voluntary Organisations and NLEP, 1987
NLEP Guidelines for MDT in Endemic Districts, 1989
NLEP Operational Guidelines on Case Detection, Treatment, Follow-up and Reporting
Forms. 1992
NLEP Status Report 1992
NLEP Facts and Figures 1992
Independent Evaluations of NLEP
Leprosy NLEP Report of Independent Evaluation 1986
Leprosy NLEP The Second Independent Evaluation, Report 1987
Leprosy NLEP The Fourth Independent Evaluation, Report 1991
SIDA-Documents Regarding Support to NLEP
(Some written in Swedish, some in English)
Project Memo January 4, 1978
SIDA-Decision, January 9, 1978 (C. Wahren)
Project document, April 1978
The Leprosy Control Program. Letter from SIDA-Stockholm to DCO (1978 07 14)
Comments on the design of the program, November 1979.
Draft memorandum on continued support during the period 1983/84-1987/88, April 12,
1983 by H, Ohlin, and letter from S. Abelin, New Delhi.
28
Project document, February 1984
Letters between SIDA, Stockholm and DCO, New Delhi,
May-December 1984
SIDA-Decision to channel support through WHO (in 12 districts) and
through Unicef (in 10 districts). December 21, 1984.
Reservations against the decision by Gudrun Hubendick and Ulla-britta Segersky,December
20 1984
Project memo for continued support to NLEP via WHO 1984-1988,
December 1984
Letter to D Haxton, UNICEF (1985 01 29) and report from meeting with WHO (1985 02
26)
SIDA-Memo about the suggested administrative post (May 31, 1985)
SIDA- Decision and Agreement with UNICEF (1985-07-10)
(Beslut om stod till indiska lepraprogrammet via UNICEF)
Memo on the support to NLEP by Inese Zalitis. (Pm om SIDA-stdd till lepraprogrammet.
I. Zalitis 1986-04-27, 3 sidor)
Memo for support to the health sector in India, February 1989
by A-K Bill
Project document, June 1990. (For the third agreement)
Project-Memo (1990-12-10); Support to
endemic diseases in India 1989-1984 by A-K Bill, SIDA Stockholm
Plan of operation for SIDA/WHO assistance
April 1991 - december 1991
Annual SIDA review meeting on progress in 1992. January 1993
Consultant Assessments of SIDA’s Support to NLEP
Comments on "Pilot project for intensification of leprosy control programs in India using
multi-drug regimen" Report on a visit to Purulia and Wardha November 20-28 1979 by
Goran Kronvall, 1979
29
Short term consultant evaluation of MDT in Wardha District, Mahrashtra, May 12, 1983 by
Goran Kronvall, 1983
Comments on the development of the co-operation, January 7, 1984 by Goran Kronvall,
Bioscand AB
Progress assessment of MDT under NLEP, December 27, 1984
by Goran Kronvall, Hakan Miorner and Peter Koren
Short term consultant assessment of SIDA supported MDT program in India, April 30, 1986
by H&kan Miorner
Report of a short term consultant assessment of SIDA supported MDT program, May 30,
1987 by Hikan Miorner and Karin Norlin
Travel report, December 1989 by Hakan Miorner and Karin Norlin
Tomas Lagerwall and Gabor Tiroler. Comprehensive Rehabilitation in India - a Community
Based Approach for People Disabled by Leprosy and Others. March 1989
Gabor Tiroler. Rehabilitering for lepraskadade och andra handikappade i Indien, 1993-11-02
Reports from MHFW to SIDA
Project document for 1990-1993 (9 pages, undated. Arrived SIDA June 26, 1990), including
description of currant status 1.2)
Project Proposal, October 1990, including status report
Plan of operation for SIDA/WHO assistance April 1991-December 1991, including statistics
about progress of MDT activities
Report for the Annual Review Meeting April 5 1993, including a current status of NLEP
and budget proposal for 1993 (43 pages), March 16 1993
Sida assistance to NLEP, Status report, October 1993
WHO Documents
Project Document, (9 pages) February 8, 1985
30
UNICEF Documents
Multi-drug therapy project for leprosy control. Project design for project in India 1985-1989.
UNICEF. May 1985
Progress Report for the Government of Sweden. Leprosy Control Program. Unicef August
1987
Progress and Utilization Report NLEP. Unicef, July 1988
Progress and Utilization Report on the MDT Project for leprosy control funded by SIDA.
Unicef, June 30, 1989
Leprosy control. A report for Kap Study. Quest Qualitative Research, Bombay. Undated
Danida Documents
NLEP. Appraisal Report and Project Proposal, October 1984
NLEP. Plan of operation, undated (1985?). Separate appendices for the districts Cuttac,
Salem, Durg and Rajnandgaon.
Anthony T D’Souza. Adaptive role change: Affecting Community Health Culture and
Salience in Health Service Delivery. An example of the NLEP South Arcot District, Tamil
Nadu. Prepared for WHO IC Consultative Meeting of Leprosy Program Managers Colombo,
Sri Lanka January 27-31, 1992
World Bank Documents
Staff appraisal report, NLEP, India June 4, 1993
Memo and recommendation on a proposed credit to India for NLEP, June 10, 1993
NORAD Documents
Norad Support for multidrug therapy program for the treatment of leprosy in Nellore,
Kurnool and Prakasam Districts, Andhra Pradesh, India. Reports from short term
consultancies in India November 12-18 1990 and February 28-March 6 1993 by Gunnar
Bjune.
31
Agreements
Agreement between Government of India and the Government of Sweden, April 24 1978
Specific agreement between GOI, WHO and GOS 1984/85-1988/89, Draft 1985-02-08
Agreement GOI, GOS and Unicef July 1, 1985- June 30 1988.
June 5, 1986
Extension of agreement Unicef-SIDA, May 31 1988.
(Decision about extension of agreement to June 1990
Decision about continued support to the program 1990/91-1992/93)
Research
Ganapati, R. et al. Community based and integrated rehabilitation of leprosy patients.
Indian Journal of Physical Medicine and Rehabilitation, Volume No 6, April 1993
Duggal, R. Jesani, A. and Gupte, M. Social aspects of leprosy. Finding from rural
Maharashtra, Foundation for research in community health, March 1988.
Social sciences research and social action for better leprosy control. Papers and other
documents presented at IAL National Workshop at Karigiri 14-15 March 1991
Sanjiv Kakar. The Politics of Segregation: Leprosy in Norway and India 1880-1900. Report.
University of Delhi August 1993
Kopparty, S N M. Acceptance of deformed leprosy patients in the family: Some
observations. Article in NLO Bulletin, Oct-Dec 1993
Thomas Lindgren. New Hope in leprosy and rural community development. Minor Field
Study in India, June-August 1988
Ulla-Britta Engelbrektsson, Proposal for a study of leprosy patients and restoration of health
in Nepal. Gothenburg, January 1991
Venkateswara Rao, K. Leprosy in rural India. Manak Publications, 1992.
32
Miscellaneous
Report from the annual meeting f the voluntary organisations involved in the NLEP and
state leprosy officers. New Delin November 6-18 1993.
A series of booklets produced by Danlep, Unicef, The Leprosy Mission India, and The
International Lepra Mission
Social work education for developing human resources for leprosy control and rehabilitation
by Dr DVP Raja, Director, Madurai Institute of Social Work, Undated memo,? pages.
33
R. GANAPATI & C.R. REVANKAR
INDEPENDENT EVALUATION OF SIDA ASSISTED NLEP MDT
DISTRICT PROGRAM IN INDIA 1993-1994
1.
INTRODUCTION
The Swedish International Development Agency (SIDA), a bilateral agency in agreement
with the Government Of India, started its support to NLEP since 1978-1979. SIDA
supported 19 endemic districts with prevalence rate more than 5 per 1000 population.
These 19 districts, covering a population of 65 million (1991 census), are located in
Tamilnadu (three districts), Andhra Pradesh (four districts), Maharastra (four districts),
Gujrat (one district), Uttar Pradesh (one district), Bihar (one district) and Karnatak (two
districts). In these districts, NLEP implemented the MDT program on a uniform pattern
as described in National MDT guidelines. In these districts, District Leprosy Societies
were established, as per the guidelines, to receive MDT funds and implement the program.
The program was monitored and evaluated regularly through monthly progress reports,
review meetings and independent evaluations. Part time consultant leprologists’ services
as well as NLEP consultants’ services were made available to all these districts.
The primary objective of the program was to detect all the leprosy cases and offer MDT
and cure them to reduce the prevalence rate, bring down transmission to reduce the new
case detection rate and to reduce the deformity rate among new cases. However,
deformity care and prevention services could not be given equal importance considering
the magnitude of the problem. Wherever possible, protective footwear and reconstructive
surgical services were also provided.
2.
TERMINAL EVALUATION
SIDA took up evaluation of these districts to find out the achievements and lacunae from
an overall angle in 1993-94. Relevant epidemiological and operational data was collected
from these districts by the evaluation team members (Dr. R. Ganapati and Dr C.R.
Revankar). This data was processed to learn some of the important lessons. North
Arcoat, Chengalpattu, Baroda and Wardha Districts were visited by Dr. R. Ganapati and
Dr. C.R. Revankar so that they might have some impressions.
37
3.
RESOURCES
3.1
Infrastructure
Table 1: Infrastructure in 19 MDT Districts.
NUMBER
1. Leprosy Control Unit (LCU)
83
2. Urban Leprosy Centre (ULC)
55
3. SET Centre (Survey, Education, Treatment)
216
4. Voluntary Organization (VO)
60
5. Temporary Hospitalization Ward (THW)
44
6. Rehabilitation Centre
15
7. Reconstructive Surgery Unit
15
8. Primary Health Care Centre
1089
9. Leprosy Training Centre
15
Infrastructural facilities available in the 19 districts are satisfactory considering the total
population under Leprosy control. 60 voluntary organizations (VO) in these districts have
played a significant role in achieving positive results. The facilities like Temporary
Hospitalization Wards (THW), reconstructive and rehabilitation units and training centres
are more than adequate to provide various facilities in these districts.
1,089 Primary Health Care Centres for a population of 65 million (one PHC : 60,000
population) can provide adequate facilities for passive case detection as well as future
integration.
38
3.2
Manpower
Table 2: Manpower in 19 MDT Districts
AVAILABL
E
%
No.
TRAINED
No.
%
UNTRAINE
D
%
No.
CATEGORY
SANCTIONE
D
1. District Leprosy Officer
(DLO)
19
19
100
19
100
Nil
2. Medical Office (MO)
126
104
83
74
71
30
29
3. Non-Medical
Supervisor (NMS)
330
296
90
278
94
18
6
4. Non-Medical Assistant
(NMA)
1936
1567
81
1559
99
2
1
5. Laboratory Technician
170
116
68
114
98
2
2
6. Physiotherapy
Technician (PT)
79
52
66
52
100
Nil
7. Health Educator (HE)
42
36
86
32
89
4
11
1.
In regard to laboratory technicians and physiotherapy technicians, though forming
an important part of the MDT program, only 67 - 68% were available. However,
practically all had training in leprosy. These available physiotechnicians could be
used to train field workers for delivering field disability care.
2.
Only 74 (71%) medical officers, out of 104 available, were trained in leprosy
control.
3.
However, the manpower availability, especially DLO, MO, NMS and NMA, was
more than 80%, which is quite satisfactory.
39
4.
ACHIEVEMENTS
4.1
MDT Coverage
Before starting MDT, 446,479 cases were on record as receiving monotherapy, in 19
districts. When the MDT programe was started in 1981-82, no proper guidelines were
available to the District Leprosy Officers. Hence screening of old cases was not done
systematically. Even deletion criteria were not clear. During the "Cleaning of Registers"
Operation in Bihar, Madhya Pradesh and Uttar Pradesh, deletion critera were made more
clear as a result of the experience gained over the years and proper guidelines were given.
All those cases who were not present at the time of assessment were also deleted. These
factors account for enormous numbers being deleted (84%). This program was funded by
SIDA in addition to MDT assistance for 19 districts. As this was a time bound and well
planned and supervised program, work was done more systematically and reported.
Simultaneously, new cases were also detected. As a result, a more accurate registered
prevalence rate could be worked out before starting MDt. 20% of the 446,479 cases on
record were of the multibacillary (MB) type. Since the beginning of MDT to
November/December 1993, 637,023 new cases were detected. 17% were the MB type.
The benefit of MDT was given to a total of 837,519 (old + new) cases.
Of 1,051,770 total cases (old + new) registered up to the end of 1993. This cumulative
MDT coverage was 80%. 92% of the MB cases were brought under MDT. 647,368 (77%)
patients completed the prescribed course of MDT.
The rest have yet to complete the program. Since the beginning of SIDA program,
989,027 cases were discharged as cured (mono- and MDT), deceased and as having left the
control area, leaving a balance of 69,425 cases on record as of November/December 1993.
4.2
Registered Active Prevalence Rate
As a result of the MDT program, the registered active prevalence rate (PR) was reduced
from 6.83/1000 to 1.07/1000 in 1993. The reduction rate was 84.33%, which is very
significant and more or less similar to other districts. The current PR ranged between 0.32
and 3.06 per 1000. 15 districts have already reached PR of less than 2 per 1000, thus
qualifying as low endemic districts.
Deogarh and Purulia districts have PR of more than 3/1000 even after nine years of MDT,
which is probably due to local operational problems.
40
4.3
New Case Detection Rate (NCDR)
At the time of starting the MDT program, a total of 93,055 new cases were detected in
these 19 districts. The annual new case detection rate (NCDR) was 1.43/1000. During
1993, 53,747 new cases were detected. The annual NCDR in 1993 was 0.83/1000. The
mean reduction rate was 42%. All throughout the program, a total of 637,023 new cases
were detected. It was expected to have a reduction in NCDR almost parallel to the
registered prevalence rate. In reality, the fall was not appreciable. This was observed in
all the districts.
This rate was ranging between 0.4 and 2.64 per 1000, as the duration of MDT program
was different. An appreciable reduction was observed during the first six to eight years
and subsequently the reduction was not so appreciable. The annual case detection rate
became constant. Even though reduction was observed, the total new cases in absolute
terms remain more or less the same. However, about 47% of the newly detected cases
were mono-lesion PB cases, whose public health importance was negligible. The mono
lesion PB NCDR was 0.29/1000.
4.4
Proportion of Child Cases Among New Cases
Since the beginning of this program, a total of 175,939 child new cases were detected.
7,427 (4%) were the MB type. However, the child proportion did not show any decline.
A total of 15,605 (16.7%) child cases were detected during 1993, showing an increase in
case detection. The child proportion increased by 88%.
4.5
Proportion of Deformity (Grade 2) Cases Among New Cases
A total of 21,492 new deformity (grade 2) cases were detected, as per WHO (1988). The
cumulative deformity rate among new cases was 3.4%. However, the deformity rate
among new cases reduced from 6.4% to 2.4% (reduction rate was 62.5%) indicating that
the new cases were detected at an early stage.
4.6
Proportion of MB Cases Among New Cases
In Indian Leprosy program, all MB cases are not smear positive, as per WHO grouping’
(1985). As per NLEP guidelines, even smear negative cases with 10 or more lesions
(including nerves) are considered for MB regimen. 111,039 (17%) new MB cases were
detected out of 637,023 new cases throughout the program. 38,114 (6.3%) MB smear
positive cases were detected. (This data was not available from Srikakulam, Deogarh).
41
However the MB proportion reduced from 23.7% to 16% by the end of 1993. The
reduction rate was 32.5%. However, this proportion varies from district to district,
primarily due to different criteria being followed at different times. Smear positive new
MB proportion reduced from 3.13 to 2.34 (reduction was 67.18%).
4.7
Incidence Of Reaction
The data available from six districts indicates that the incidence of reactions seems to be
very low. This is perhaps due to the addition of Clofazimine to the MDT regimen.
4.8
Voluntary Reporting
After the introduction of MDT program, 35.1% of new cases reported voluntarily,
indicating an increased awareness and popularity of the program.
4.9 Summary
The overall achievements are as follows:
INDICATORS
BEFORE
MDT
CURRENT
% REDUCTION
1. Regd Prevalence Rate/1000
6.83
1.07
84.33
2. New case detection Rate/1000
1.43
0.83
42.00
3. Child Proportion % Among
New Cases
16.70
31.40
+ 88.00
(increase)
4. * Deformity Proportion %
Among New Cases
6.40
2.40
62.50
5. MB Proportion Among New
Cases
23.70
16.00
32.50
* Even though deformity rates (Grade 2) among new cases declined over a period of time,
the total deformity cases (old + new) increased. In 14 districts, 33,833 deformity cases
were recorded, which is a major post-MDT residual problem.
42
5.
LEPROSY AMONG FEMALE POPULATION
Data available from Vishakapattanam and Wardha showed that 27,449 (36.8%) female
patients were detected out of 74,544 new cases. In one of the districts (Baroda) 37.4% of
the Grade 2 deformity cases were female patients.
6.
DEFORMITY CARE AND PREVENTION
Routinely, health education is provided to all deformity cases regarding care of hands and
feet. Data available from 12 districts showed that 31,315 patients were provided protective
footwear. 1,397 deformity patients underwent reconstructive surgery.
7.
POST MPT RESIDUAL PROBLEMS
7.1
Deformity Problem
The deformity (Grade 2) data among old monotherapy and old MDT cases was not
available from all the districts. A special data collection made in 14 districts revealed that
20,666 (4.6%) deformed patients were recorded out of 446,955 registered cases.
Though the NCDR of deformity (Grade 2) among new cases decreased, the total
prevalence rate of deformity (old + new) is high (0.82/1000). 33,833 (4.8 %) deformity
cases were recorded in 702,323 (old + new) registered cases in 14 districts.
Though deformity rate among new cases has shown reduction, the magnitude of the
problem would be quite high, requiring special deformity care and prevention programs
using field technology after suitable task oriented training. If we consider Grade 1
(anaesthesia), this problem will increase, which will also require program attention from a
point of protection of anaesthetic limbs.
However, deformity data from these districts does not include patients with various grades
living in the leprosy colonies and leprosy homes. Before planning deformity care program,
every effort should be made to update deformity data, including leprosy homes and leprosy
colonies.
43
7.2
Relapse Problem
Over a period of time, 2,946 MDT relapses and 1,212 DDS monotherapy treated relapses
were detected in 10 districts. Though the cumulative rate over this period is very low, this
may reach an appreciable size in future. However, data on late reversal reactions from
non of these districts is available, which is likely to be mistaken for post-MDT relapse due
to inadequate training of NLEP workers.
44
c. McDougall
ITINERARY
28th December 1993
29th December to
3rd January 1994
Travelled from UK to Delhi via Amsterdam.
SIDA team meetings in Claridges Hotel, Delhi.
3rd January
Travel from Delhi to Bhubaneswar, Orissa. Meetings with
Joint Director of Health Services (Leprosy and Tuberculosis),
WHO Consultant and the Assistant State Leprosy Officer.
4th January
Travel from Bhubaneswar to Berhampur in Ganjam District.
Meetings with district level officials of the National Leprosy
Eradication Program (NLEP) for Ganjam.
Sth & 6th January
Evaluation, including field trips, of the work in Ganjam
District.
Late 6th January
Travel from Berhampur to Srikakulam in Andhra Pradesh.
Meetings with district NLEP officials and WHO Consultant for
Andhra Pradesh.
7th & Sth January
Evaluation, including field trips, in Srikakulam.
9th January
Travel from Srikakulam back to Bhubaneswar in Orissa.
10th January
Final discussions with WHO Consultant, State Leprosy Officer
and Director of Health Services in Bhubaneswar.
This concluded the district visits for SIDA. I then went on to assist the State Government
in the District of Phulbani with teaching and training workshops for the implementation of
multiple drug therapy.
25th January
Travel from Bhubaneswar to Delhi.
26th January
Republic Day (national holiday). Stay in Delhi, writing this
report for SIDA.
27th January
Briefing with Ms. Gunilla Essner in the Swedish Embassy,
Delhi, on my preliminary findings in the two districts. Courtesy
call on Dr. B.N. Mittal, Deputy Director General (Leprosy),
Directorate of Health Services, Delhi.
January 28th
Travel from Delhi to London and Oxford.
47
GANJAM DISTRICT IN THE STATE OF ORISSA
Background Information
Ganjam is one of the current total of 13 districts in Orissa, soon to be subdivided into a
total of about 30. It lies on the eastern sea border (Bay of Bengal) with Puri District to
the north, Srikakulam in the State of Andhra Pradesh to the south, and Koraput and
Phulbani to the west. The 1991 census gave a figure of 3,158,764 for the district
population, about 40% of whom are of tribal origin. Ganjam extends to about 12,556 sq
km and about 80% of the population live in rural areas.
Basic Epidemiological Indicators
These are shown in the various tables of the Appendices. Although the situation is
changing quite rapidly for the better (Ref. 1), Orissa has been highly endemic for leprosy
for many years; seven out of its 13 undivided districts have, until recently, had prevalence
rates of more than five per 1000 of the population. The State prevalence was 12.4 per
1000 in 1982 and it has now come down to 2.13 per 1000. Changes in incidence, disability
and child rates are discussed below in appropriate sections.
Staffing Structure
This is conventional, following the basic plan and guidelines in a series of publications
from the Leprosy Division of the Directorate General of Health Services in Delhi (Ref. 26). No significant modifications have been made in Ganjam.
SIDA Support For Multiple Drug Therapy (MPT) in Ganjam District
MDT was introduced in Ganjam, with SIDA support, in March 1983; it was the first
district chosen in the State of Orissa and the fourth for SIDA support in the whole
country, following Wardha in Maharashtra in 1981, Purulia in West Bengal in 1982 and
Srikakulam in Andhra Pradesh in 1983. At the outset, Ganjam had a prevalence of 13.5
per 1000 and it was partly because of this high figure and partly because of the presence of
a good infrastructure that it was chosen to be the first district for MDT in the State. The
duration of the SIDA support in Ganjam, as for the other 18 districts, was essentially for
the three years of the ’intensive’ phase but in practice sometimes extended to four years.
In the case of Ganjam, SIDA financial support was for several years channelled direct to
the District Leprosy Officer and it was not until 1989 when the District Leprosy Society
was formed that it went to the Chairman. In principle, Government of India support
ceases, and reverts to support by the State Government, when the prevalence below two
per 1000.
48
Operational and Control Program Methodology
As with the staffing structure, this is conventional, following the Government guidelines
already referenced above. The operational methodology has relied heavily on the
establishment of circuits and the availability of reliable transport to carry a medical officer,
non-medical supervisor, para-medical worker and driver, with organisation of patients at
fixed treatment delivery points, ensuring that none had to walk more than 1 km in order to
receive regular chemotherapy. The extent to which this system, devised at a time of high
prevalence but still preserved in 1994 when the workload has fallen very markedly, is still
viable and will be discussed below.
Program of Work and People Contacted During the Evaluation
I was given detailed information by the Assistant State Leprosy Officer in Bhubaneswar
and then accompanied throughout the visit to Ganjam by the Joint Director of Health
Services (Leprosy and Tuberculosis) and the WHO consultant for the State of Orissa. We
were met by the District Leprosy Officer and his supporting staff, who had organised an
intensive program, including discussions at the DLO office and field visits to see a circuit
in action. We also visited the Urban Leprosy Centre and the Leprosy Control Unit in
Berhampur, where the doctors in charge explained their respective programs of work.
During the circuit visit on the second day there was ample opportunity to examine
patients, check the patient record cards and question the NLEP staff about their criteria
for diagnosis, classification, ability to recognise reactions, follow-up of defaulters and
disability prevention.
Key Points From Discussions, Examination of the Records and Field Visits in Ganjam
Bearing in mind that most of the discussions, which were lengthy and detailed, took place
between the Joint Director of Health Services, the WHO consultant for Orissa, the District
leprosy Officer for Ganjam and myself, the following were the most important points
which emerged:
1.
Overall Contribution/Value of the SIDA Financial Contribution
Most senior staff, including the District Leprosy Officer, had first-hand
experience of the period (1983-1986) during which money was channelled
from SIDA, through WHO, to this district for leprosy work, but many others
were completely unaware of what had happened in the past, did not
specifically identify SIDA as a Swedish donor agency in India and had only a
vague idea that either the Government of India, WHO or some other agency
had provided money for the program. However, those who did identify
SIDA as the main contributor in the early 1980’s were unanimous in their
praise and appreciation for what had been done. In common with the
opinion of Dr. B.N. Mittal, Deputy Director General (LEP), Directorate
General of Health Services, New Delhi, they emphasized that a large
contribution of money had been made, without administrative delay, at a
49
crucially important point in the early stages of MDT in India and that the
results from Ganjam had greatly strengthened the Government case for
extending the same strategy to other parts of India. Understandably,
particularly in view of the diminished support for leprosy control work
generally, including serious problems with the supply of vehicles (see below),
many peopled interviewed were sad to hear that SIDA would be ending its
support for MDT programs in March/Aril 1994.
2.
Specific Contribution of SIDA to Medical and Operational Aspects
There is no doubt that the SIDA contribution enabled this district to get
moving without delay on the implementation of MDT, including the
’preparatory’ and ’intensive’ phases and the removal from the registers of
large numbers of patients, prior to MDT implementation, who did not
qualify for chemotherapy. The operational indicators for this and the other
18 districts supported by SIDA are shown in the Appendices revealing,
amongst other changes, that marked reductions in prevalence rates have
occurred and that disability rates in newly detected cases are now very low
(often zero). The child rates in Orissa generally appear to have risen, but it
has to be recognised that large scale examinations of school children have
increased greatly in recent years and that the ability of NLEP to detect early
leprosy has almost certainly improved through the years. Additionally, there
may well be an element of over- or wrong diagnosis in the recording of
single (mono-) lesion cases in children (notoriously difficult to diagnose with
certainty as being leprosy) due to the continuing of use of achievement
’targets’ given to staff of the detection of new cases each month. Finally, in
assessing the marked changes in disability rates it must be kept in mind that
very large numbers of disabled patients were cleaned (screened) from the
registers before MDT, and that these included a considerable percentage
with Grade 2 (WHO) disabilities.
In summary, it is my impression that the SIDA contribution in Ganjam a)
was greatly appreciated by those who saw it in action and b) almost certainly
contributed a great deal to the establishment of the MDT strategy in the
district thus helping to demonstrate that it could be extended to other parts
of India. Its more precise effect on medical and operational outcomes is
difficult, probably impossible to assess in precise terms at this stage (January
1994), mainly because so many years have passed since the period of SIDA
financing.
3.
50
Confirmation of Diagnosis
Particularly in view of the disappointingly slow decline in incidence/new case
detection rates, even in districts which have implemented MDT for 5-8
years, I specifically asked about the process for confirming the diagnosis of
leprosy. The answer is that in Ganjam 60% of all detected, referred or self-
reporting cases are verified by non-medical supervisors, all of whom have
had at least 10 years experience before promotion. The remainder are
confirmed by a medical officer and/or an experienced para-medical worker,
a small number of difficult or doubtful cases are seen by the WHO
consultant (there have never been any district level consultants in Orissa).
This process is probably satisfactory but a potentially weak link centres on
the training and experience, if any, of medical officers (see below).
4.
Screening Out (Removal From the Registers) Prior to MDT Implementation
In looking at the figures and overall results, SIDA should be clearly aware
that the marked reductions in prevalence rates, not only in Ganjam and
Srikakulam (see below), but also in the 17 other SIDA-supported districts,
have in large measure been due to the removal from the registers of large
numbers of patients, before MDT implementation. In Ganjam, the case
load was 36,704 prior to MDT implementation, from which no fewer than
24,255 were screened out and removed from the registers. Furthermore, it is
of considerable interest to note that a large number of those screened out
were considered to have been cured by Dapsone monotherapy.
5.
Disability Prevention and Management and Rehabilitation
Despite the official policy of the NLEP to combine these activities with case
detection, MDT implementation, etc, there was general agreement during
discussion in Ganjam that they had not been adequately addressed and that
virtually nothing of significance, on the scale needed, had been achieved in
rehabilitation. The reasons for this are complex and numerous, ut they
include a) main emphasis on case detection, diagnosis and treatment with
new and attractive regimens (sometimes provided in blister-calendar packs)
b) a lack of systematic training and supervision of NLEP staff in the
necessary procedures, all of which have been described in detail (reference 7
and 8) and c) a failure on the part of SIDA to insist that disability
prevention and management were written into the agreement at the outset,
almost as a condition of continuing support and that the defects identified by
SIDA consultants through the years were remedied.
6.
Medical Officers in the NLEP in Ganjam
The DLO drew my attention to the continuing and unsatisfactory situation
with regard to medical officers posted into and out of the district. Of the
nine who were in position about a year ago, all of whom had eventually
received some training, every one has now been posted elsewhere and their
replacements included doctors with neither experience nor training in
leprosy. Ganjam has decided, very wisely, to reduce the period of training
for medical officers from the usual three months to an intensive five days in
future.
AMO
o0CUf.V-^AT<0N
> p
) J
51
7.
Vehicle Availability in Ganjam for Treatment Delivery and Supervision
As already mentioned, the leprosy program in this district is threatened by a
shortage of roadworthy vehicles. All those in use are over ten years old,
some 11 or 12. They are now down to a bare minimum and will not be able
to maintain treatment circuits, school, general population, and contact
surveys, as required by the NLEP, unless the vehicle situation is addressed.
8.
Admission of Leprosy Patients to the Medical College Hospital, Berhampur
As on previous visits, I was impressed with the way in which leprosy patients
are admitted to a ’leprosy ward’ in the main hospital in Berhampur, where
they are attended to by dermatologists, orthopaedic specialists and others as
needed. Male patients only are admitted; the need for female admissions
appeared to be very low, but they have occasionally been admitted to
general wards (and they can routinely be admitted to the female wards of
the Central Leprosy Training and Research Institute at Aska in this district).
I was told by that there have never been any objections on the part of
administrators, medical staff, nurses or the public to the admission of cases
in the hospital at Berhampur.
9.
Compliance and Regularity of Attendance for MDT
Based on recorded attendance rates, interviews with patients and surprise
counts of tablets and capsules in villages, overall compliance has been
assessed at well over 80% and often nearly 90%. The chemical ’spot’ test
for Dapsone in the urine has not been used nor has the colour of the urine
been checked with 12 hours of supervised Rifampicin, for the presence of a
typical red colour. Blister-calendar packs for MDT drugs were sometimes
available (supplied by DANLEP) but were by no means regarded as
essential to good compliance.
10.
Voluntary Reporting of New Cases, Versus Detection by Staff
From previous levels of about 5%, voluntary reporting in Ganjam (and other
parts of Orissa) now runs at about 50%, suggesting that there is a markedly
improved attitude to seeking treatment on the part of the general public,
the figure may in fact be higher, since there is a tendency on the part of
some NLEP staff to ’convert’ a self-reporting situation into one of active
case detection, thus taking credit for the new case discovered.
52
11.
Drug Toxicity from Dapsone, Clofazimine or Rifampicin
During these brief visits, despite enquiries, I received no information to
suggest that toxic effects (ie. adverse effects on skin, liver, bone marrow,
etc.) had been of significance. Anaemia is common in the rural areas of
Orissa and might well have been accentuated by Dapsone, but this has not
been investigated. The patients on the multi-bacillary regimen which
includes Clofazimine did not complain of the typical reddish brown
pigmentation of the skin which it produces or of troublesome gastrointestinal
symptoms. In general it may be stated that in view of the fact that over four
million patients with leprosy (many of them multi-bacillary) have been
treated with MDT in India, remarkably few side effects have been
encountered.
12.
The Principle of ’Incentives’ (Additional Money in SIDA Programs)
Considerable amounts of money have been spent on incentives for those
taking part in the SIDA-supported programs. Those who have received this
extra money have obviously been well pleased, but others looking at this
element of the strategy more objectively have questioned its longer-term
wisdom for a number of reasons. Although India has long had a ’risk
allowance’ for staff working in leprosy, tuberculosis, cancer and radiology,
the principle of an additional incentive to those taking part in MDT
implementation has created some problems. Staff have been reluctant to
accept transfer from an incentive to a non-incentive area and there have also
been difficulties, for instance, in integrating leprosy work into the Primary
Health Care system.
SRIKAKULAM DISTRICT IN THE STATE OF ANDHRA PRADESH
Srikakulam is one of 23 districts in the densely populated State of Andhra Pradesh on the
eastern coast of India between Orissa in the north and Tamil Nadu in the south. The
language is Telugu, but English is widely spoken. The overall literacy rate is only 30%
with significantly lower figures in women compared to men (as elsewhere in India). The
population of Srikakulam is 2,314,442. The area is mainly agricultural; over 80% of the
population live in rural areas.
Basic Epidemiological Indicators
These are shown, together with those for Ganjam and the other 17 districts supported by
SIDA, in the Appendices. As in Ganjam, following the screening out of large numbers of
patients at the outset and the subsequent use of MDT on all registered cases, there has
been a dramatic reduction in prevalence. The disability rate in newly detected (mainly
mono-lesion) cases is very low (often zero). As already mentioned above, it is important
for SIDA to appreciate that the initial screening of the registers had a highly significant
effect on the total number of registered patients, before MDT started and that the fall in
disability cases through the years is to some considerable extent related to the removal
from the registers of many patients with disabilities.
Staffing Structure
This has been conventional. Hardly any important modifications have been made in these
patterns. Srikakulam has been unusually fortunate in that it is part of a high-endemic
leprosy State (Andhra Pradesh) where there has been a long tradition of high quality
leprosy work, including for instance, the proviso that all District Leprosy Officers must
have at least five years experience before appointment to this level.
SIDA Support for MPT in Srikakulam District
This was started in January 1983 with SIDA support and continued until January 1986. As
with Ganjam and the other districts, the money went first to the District Leprosy Officer,
later to the District Leprosy Society.
Operational and Control Program Methodology
Again, this has been conventional throughout, following NLEP guidelines, as described
above for Ganjam.
Program of Work and People Contacted During the Evaluation
On arrival I was met by the District Leprosy Officer, Dr. Sastralu and also by Dr. Rajarao,
currently DLO in Nalgonda, but previously DLO in Srikakulam for many years. We were
joined by DR. B.K. Rao, WHO consultant for Andhra Pradesh and advisor to the NLEP in
Delhi. Dr. Adeseshaiah, acting Program Manager for the State, came from headquarters
in Hyerabad. We had lengthy discussions on all aspects of the program, which is
outstandingly well documented and illustrated on a series of panels and charts in the DLO
office. On the second day we visited a number of treatment points in a typical circuit and
as in Ganjam, had ample opportunity to see patients, examine patient records and check
the performance of staff.
Later I was taken to Pogiri Hospital about 40 km from the town of Srikakulam, which was
built for leprosy work in 1962 by Danish Save the Children and transferred to Government
administration in 1972. There are 50 beds and they were mainly occupied by male and
female patients with recurrent foot ulcers , under treatment with ointment and bandages,
followed by the provision, in some cases, of micro-cellular rubber chappels, but with
limited acceptance and use by patients. This picture of weak and irregular availability of
protective footwear for such patients is the rule in most parts of Orissa.
54
Key Points Arising from Discussion, Examination of Records and Field Visits in
Srikakulam
1.
Overall Contribution of the SIDA Financial Contribution
As for Ganjam, above, the officials met were unanimous in their praise and
appreciation for what had been done; the SIDA backing was considered to
have been invaluable, at a critical point in the development of the MDT
strategy. In view of the long experience of the WHO consultant and Dr.
Rajarao, this opinion must be considered to carry considerable weight,
especially as both were familiar with events during the period of SIDA
support.
2.
Specific Contribution of SIDA to the Medical and Operational Outcome
It bears emphasis that the quality of work in this district has been so high
throughout that it has been frequently analyzed and used to influence
Government of India policy on leprosy control. However, in detailed and
specific terms, my colleagues in Srikakulam admitted that it might be
difficult in early 1994 to express an opinion on the contribution of the SIDA
support in the early 1980’s.
3.
Temporary Hospitalization Ward Attached to the Main Hospital, Srikakulam
We visited this on the first day. There were 22 patients, mostly 60 years of
age or more, with recurrent foot ulcers, under treatment with ointment and
bandages. Facilities for protective footwear were uncertain. In a program
which is in many ways outstandingly good, there were quite serious defects in
the supply of protective footwear and, on a wider scale, it was admitted by
those running the program that inadequate attention had been given to
disability prevention and management. Rehabilitation does not seem to
have been attempted on any meaningful scale.
4.
Drug Supply, Quality Control and Compliance
Examination of drug stocks, usually kept in pad-locked metal cabinets,
revealed good supplies of Dapsone, Clofazimine and Rifampicin, together
with 5mg tablets of Prednisolone for the treatment of reactions. There were
also bottles of aspirin and paracetamol (for nerve pain, etc) and ferrous
sulphate tablets (for anaemia). The origin of the MDT drugs was mixed;
many had been manufactured in India, others came from Ciba-Geigy in
Switzerland and there were some blister-calendar packs supplied by
DANLEP. Drug supply and distribution appeared to be satisfactory with no
’unexplained’ losses, notably of Rifampicin. I was not able to obtain
information on quality control (including for instance, bio-availability
studies) but it was the general impression that none had been done.
55
Compliance, using the indicators already mentioned above, ranged from 8090%.
5.
Monitoring, Assessment and Supervision by SIDA
The people I met in Srikakulam, most of them highly experienced, expressed
some surprise at the lack of systematic assessment and monitoring of the
results of SIDA support through the years. At least one official considered
that a detailed assessment should have been carried out about three years
after the start of SIDA financial support. Various SIDA reports, made
available to the evaluation team when they met in late 1993 in Stockholm,
describe visits made by SIDA consultants, with recommendations, but
regrettably with little or nothing by way of follow-up. The absence of an
effective disability prevention and management program, over a period of
years, is particularly unfortunate and should have been corrected at an early
stage, perhaps as a condition of continuing support.
6.
Present and Future Operational Strategy in Srikakulam
My overall impression from this brief visit is that an enormous amount of
high quality work has been (done) through the years and that this was
greatly helped by the SIDA contribution in the early 1980’s. The district
now faces a situation, however, in which the transport situation is weak,
many of the vehicles being old and heavily repaired, thus threatening the
established pattern of circuits and out-patients supervision. Furthermore,
the workload has fallen dramatically and there is a need to develop new
strategies and patterns of work to fit these changed circumstances. This
should include detailed training and instructions for existing staff on
disability prevention and management, particularly as many of them are no
longer fully occupied. The picture with regard to national policy on
disability management and rehabilitation is complicated by discussions
currently under way in Delhi involving financial backing by the World Bank.
Until this becomes clear it is difficult to make practical proposals for
improvement in these activities in the two districts dealt with in this report,
and the future involvement if any of SIDA in rehabilitation programs, for
instance, in Srikakulam or Wardha.
56
REFERENCES
Multiple Drug Therapy in Ganjam District, Orissa.
Achievements from 1983 to 1993. Leprosy Cell, Directorate of
Health Services, Bhubaneswar, Orissa, January 1994.
1.
Pattnaik, P.K.B.
2.
National Leprosy Eradication Programme in India, 1987.
Guidelines for Multi-Drug Treatment in Endemic Districts.
Leprosy Division, Directorate General of Health Services,
Ministry of Health and Family Welfare, New Delhi, India,
1987.
3.
Ditto
Revised Version, 1989.
4.
Mittal, B.N.
National Strategy for Elimination of Leprosy in India. Indian
Journal Of Leprosy, volume 64(4), 1992.
5.
National Leprosy Eradication Programme.
Operational Guidelines on Case Detection, Treatment,
Follow-up and Reporting Forms. Leprosy Division, New
Delhi, as above, 1992.
6.
National Leprosy Eradication Programme in India.
Revised Guidelines for Multi-Drug Treatment in Endemic
Districts, 1993. Leprosy Division, New Delhi, as above.
7.
National Leprosy Eradication Programme in India (Care of the Cured).
Guidelines for Disability Care and Rehabilitation, 1993.
Leprosy Division, New Delhi, as above, 1993.
8.
International Federation of Anti-Leprosy Associations (ILEP).
Prevention of Disability. Guidelines for Leprosy Control
Programmes. ILEP Medical Commission, Leprosy Control
Discipline, 1993.
9.
Krishnamurthy, K.V.
Protective Footwear for Leprosy Patients with Sole
Sensory Loss or Ulceration of the Foot.
Correspondence, Accepted for publication, 1994,
Leprosy Review.
57
M.PEAT
REPORT FOR THE SWEDISH INTERNATIONAL DEVELOPMENT
AUTHORITY (SIDA) ON A VISIT TO BOMBAY TO EVALUATE THE
MULTI-DRUG THERAPY (MDT) PROGRAM IN INDIA
The visit was organized by Dr. R. Ganapati, Director of the Bombay Leprosy Project, and
Dr. C.R. Revankar, Deputy Director. The visit was organized to provide a view of the
various aspects of the project, from community programs to inpatient services.
*
Department of Preventative and Social Medicine
Lokmanya Tilak Memorial Medical College
SION
(Computer Centre)
*
Vocational Rehabilitation Centre for the Handicapped
(Ministry of Labour)
*
Leprosy Ward
Adam Whyllie Hospital
(Indian Red Cross)
*
Dermatology Out-patient
Grant Medical College
J.J. Hospital
*
Urban Health Centre
L.T. Memorial Hospital
(adjacent to DHARAVI)
*
Community Leprosy Program
DHARAVI (slum area)
*
Shramik Vidyapeeth
Vocational Training Centre
DHARAVI
This is an excellent integrated program ranging from institutional care to community based
services focusing on integration, employment and acceptance.
61
Bombay Leprosy Project ■ January Sth
Leprosy Ward, Adam Whyllie Hospital
This 21 patient unit is available for patients who require inpatient care (foot ulcers and
reaction) and is also part of a drug trial research program. With an out-patient (MDT)
service also being available, the unit is run by paramedical workers who have had six
months training in administration, finance and drugs. Public support is required for the
continuation of the service.
A member of the leprosy project has completed a study on attitudes toward leprosy, a copy
of which has been requested. In addition, a related study of attitudes has identified that
relatively ’poor’ attitudes toward leprosy exist in the senior level of the medical profession,
although younger physicians are more knowledgable, making major policy changes a
problem.
A review of both patient and financial records demonstrated a high level of competency,
with the financial records having been kept with great detail. This indicated very
professional staff and high quality leadership.
A discussion of the use of drugs other than MDT, including Predisolone, indicated that the
use and application of these other drugs is generally not well understood or consistently
applied.
In the in-patient service, the financial support of each patient is 196 rupees per month
while the actual cost per patient is 750 rupees per month. All eight areas in Bombay get
SIDA support for incentives, clinic register/stationing, PT aids, training of field workers
and health education. The project pays the difference.
Grant Medical College - January Sth
This is Bombay’s oldest medical college and is highly regarded both nationally and
internationally. A visit was made to:
*
*
*
the outpatient (leprosy) clinic
the laboratory - skin smear services
rehabilitation services
- ADL and splints
- development of a disability assessment protocol
*
footwear program
This is an excellent example of a highly integrated approach to leprosy management into
a broader clinical program, with the clinic and service being located in a comprehensive
dermatology program. The disability program in this unit was also particularly impressive,
the technical level and competency of the personnel being excellent.
62
Urban Health Centre - January Sth
L.T. Memorial Hospital
The hospital provides a clinical teaching program in community medicine. The hospital is
adjacent to the major slum area of DHARAVI, which is occasionally referred to as ’Asia’s
largest slum’. From this centre a visit was made to two patients who are part of the
leprosy community based rehabilitation program; both lived, worked and were integrated
into the social and economic life of the community. One patient was a member of a
family who had a ’small scale pot making industry’ and demonstrated appliances which
enable him to adapt tasks to his abilities and so function effectively in the work
environment. The second patient was a vendor of sugar cane and also demonstrated an
understanding of disability, using hand splints to enhance function. Both patients, their
families and their communities demonstrated the value and potential rewards of a
commitment to integration.
Shramik Vidyapeeth, January Sth
Vocational Training Centre
This centre was needs oriented for both the community and the patient, providing training
in such crafts as screen printing and tailoring, with emphasis on self-employment skills.
The patients also included physically disabled from other causes, making it an example of
integrated rehabilitation. The agency is supported by a number of organizations such as
the government, the Bombay Leprosy Project and the Lions Club. Some of the major and
most popular courses include Beautician (1st), Hand Painting (2nd) and Wireman (3rd),
with others such as welding being sponsored by industry. The average age of the
participants is 15-30 years of age, with a 50% ratio of men to women. Leprosy patients
are integrated into the vocational training.
Department of Preventative and Social Medicine ■ January Sth
Lokmanyo Tilak Memorial Medical College, SION
This facility concentrates on computer program development, supported by DANIDA,
having one computer plus its accessories and two personnel, a programmer and an
operator. The objective is to become the central statistical resource for leprosy for all of
Bombay District.
Vocational Rehabilitation Centre for the Handicapped
R. Narasimham is the Senior Superintendent of this facility, which is similar to 17 others
in India under the control of the Ministry of Labour. Leprosy patients are less than 5% of
the total number at this facility, however, it is a model of integration.
63
J. WATSON
TERMS OF REFERENCE
The evaluation shall comprise but not necessarily be limited to the following aspects:
the epidemiological and public health impact of the Multi Drug Therapy
programme related to control and eradication of leprosy.
the utilisation of funds and the cost-efficiency of the programme.
the infrastructure and logistics of the Swedish programme and how it may be
adapted to the epidemiological changes in each area in relation to the PHC
structure.
the quality of drugs and their handling as well as side effects and their
treatment.
the social effects of the NLEP with respect to attitudes among the public and
with respect to community participation in the programme.
the disability index, according to the guidelines of WHO, e.g. the relationship
between newly detected cases and the ones with disability among those, and
the prevention of the dehabilitation of new cases in the future as well as the
possibilities to rehabilitate those physically and socially disabled.
to assess what data is available to describe the baseline situation in 1986, its
adequacy for programme planning and outcome measurements, and its utility
for administrative and auditing purposes
to describe programme inputs; to describe programme outputs; to describe
programme outcomes; to assess whether objectives were achieved.
The lessons to be learned from the NLEP for the future operation of the programme. Clear
recommendations should be made on the aspects of the programme, including possible other
donors for future financing.
67
ITINERARY AND MEETINGS HELD
1.
December 28th/Arrive Delhi midnight
December 29th - January 2nd/Evaluation team discussions in Delhi
2.
January 3rd/Fly Delhi-Calcutta
a.m. Met in Calcutta by the State Leprosy Officer, Dr. Chatterjee, We
travel together by train to Purulia, arriving shortly before midnight.
January 4th/Day 1 : Purulia
1.
2.
3.
4.
Meet the DLO and National and State Leprosy Consultants.
Visit Kuda DDP (Drug Delivery Point).
Visit DLO Office. Discussions with Varanasi team and consultants.
Evening meal hosted by Dr. Ghosh. He and Dr. Mahapatra are
to depart tomorrow morning.
January 5th/Day 2 : Purulia
1.
2.
3.
4.
Visit Kanditah DDP, under Balarampur LCU (Govt.).
Visit Chatu Hasa DDP, also under Balarampur LCU (Govt.).
Visit Balarampur Control Unit Office, the State HQ of the
Gandhi Memorial Leprosy Foundation.
Discussions with the CMO and with team members at the
circuit house.
January 6th/Day 3 : Purulia
1.
2.
Visit DDP Purulia Block-I in Pichasi sector.
Discussions with CMO, and Consultants at Circuit House.
January 7th/Day 4 : Travel to Bankura District
1.
2.
3.
68
Visit the Regional Training and Research Institute of the
Central Government and the State Government Leprosy
Hospital which is on the same compound.
Discuss training facilities.
Participate in the monthly meeting of senior Leprosy Control
staff of Bankura District.
Return to Purulia.
January 8th/Day 5 : Purulia
Discussions with Dr. Rajan Babu, Mrs. Margaret Mahato and Dr. Kiran at the
TLM Referral Hospital in Purulia.
January 9th
Travel by TLM jeep to Tatanagar and thence by overnight train to Varanasi.
3.
January lOth/Day 1 : Varanasi
Arrive 8.30 a.m. by train from Tatanagar.
Driven to Government Tourist Guesthouse.
1.
2.
9.30 a.m. Meet consultants and colleagues and visit 3 DDPs.
p.m. Visit Varanasi District Leprosy Office to see data and have
discussions regarding the programme.
January llth/Day 2 : Varanasi
Visit more DDPs.
January 12th/Day 3 : Varanasi
Visit more DDPs. Examine 6 former patients having a disability problem at
the DLO office. Go to airport to await flight to Delhi, but this is cancelled.
Overnight in Varanasi at airlines’ expense.
January 13th/Day 4 : Varanasi
All morning awaiting postponed flight. Late afternoon, fly Varanasi to Delhi,
too late for the planned meetings with Ms. Essner of SIDA and Dr. Mittal of
MOPH. Thus change ticket from 13th to the next KLM flight on 16th from
Delhi to London via Amsterdam.
January 14th : Delhi
a.m.
p.m.
Discussions with Mr. Jan-Olov Agrell, Counsellor and Head,
and Ms. Gunilia Essner, Senior Programme Officer,
Development Co-operation Office (SIDA).
Discussions with Dr. Mittal, Director of NLEP.
63
January 15th : Delhi
a.m.
p.m.
Discussions with Dr. C. Walter, Director, The Leprosy Mission, India.
Discussions with Dr. Boudewijn F.A.M. Peters, Chief Adviser,
Danida Assisted National Leprosy Eradication Programme.
January 16th : Depart India
Catch early morning KLM flight Delhi to London.
1.
INTRODUCTION TO PURULIA VISIT
The population of Purulia District was 18,53,801 at the time of the 1982 census and had
risen to 22,17,423 by the time of the 1991 census. The area covered is 6,259 square
kilometres, 6193 sq.km being rural and only 65.6 urban. The district has a strong
component of tribal people. It is bounded to the north, south and west by Bihar State.
Thus there is much inter-State migration. Some leprosy patients live in Purulia, West
Bengal (WB) and work in Bihar.
MDT was introduced to Purulia, with SIDA support, on 1.2 82. The intensive phase lasted
until 1985 under the direction of Dr.Ghosh who was transfered to the district from the State
office. SIDA funds were paid directly to the district. A SIDA official came in 1985 and
closed the local SIDA account. By 31.3.85., the intensive phase was complete and there was
gradual handover of responsibility to local leprosy staff under Dr.Mahapatra as DLO. SIDA
funds were then sent from Delhi to the district direct, and banked in a District Society
account. SIDA support was terminated on 31.3.91.
There are 5 Leprosy Control Units plus 1 Urban Leprosy Unit in the district. Several
Voluntary Organisations collaborate in the work: The Leprosy Mission conducts urban
clinics and training courses and operates a referral hospital with reconstructive surgery
facilities. The German Leprosy Relief Association and the Gandhi Memorial Leprosy
Foundation run rural leprosy control units and there is a leprosy centre named
Nabakushanipas.
Many patients in Purulia district have been cured and many new patients have been
identified. Thus the programme has shown definite success. The leprosy prevalence in
1982, presumably prior to the cleaning of registers, was over 30 per 1,000 and has been
reduced to 3.06 per 1,000. However despite the reduction in prevalence rate, the recent
impact of the programme on the incidence rate and the new case detection rate (particularly
MB cases) gives cause for some concern. In 1993, up to November, there were 2,500 new
cases, greatly exceeding the new patient target set by the NLEP of 700 new cases. Staff look
forward eagerly to the results of the stratified sample survey in the district which is
scheduled to commence in February 1994.
70
Active
Cases
MB
Prev
Prev.
Rate
New Cases (N C)
MB
PB
Total
NC
detection
rate
1982-83
27,823
4.24
14.69
1,936
2,760
4,696
2.48%
1983-84
34,057
5.21
17.75
2,392
5,882
8,274
4.29
1984-85
30,744
4.36
15.81
889
4,182
5,071
2.58
1985-86
26,791
2.70
13.60
729
5,716
6,445
3.22
1986-87
19,599
1.98
9.83
598
5,390
5,988
2.94
1987-88
12,619
1.72
6.25
760
4,621
5,381
2.59
1988-89
12,040
1.76
5.89
893
4,574
5,467
2.59
1989-90
10,024
1.79
4.82
1,046
3,029
4,075
1.90
1990-91
9,023
1.77
4.13
1,323
2,878
4,201
1.92
1991-92
8,485
1.70
3.83
1,184
2,571
3,755
1.69
1992-93
7,576
1.58
3.35
1,128
2,704
3,832
1.69
To Nov.
1993 Only
7,054
1.52
3.06
777
1,790
2,567
1.11
Numbers of active
On record February 1982 at the start of MDT:
On 31.3.91.at the termination of SIDA support:
On 30.11.93 ........................... :
PB
17,994
5,193
3,555
MB
6,251
3,828
3,499
Total number of new cases detected 1982-November 1993:
Total number of cases inducted into MDT (pre + new):
Total number of cases discharged from MDT as cured:
Total
24,245
9,021
7,054
59,752
58,431
47,791
71
New case finding indicators are shown in the table below. During field visits some problems
in recording of deformity were noted.
Year
1982- 3
1983- 4
1984- 5
1985- 6
1986- 7
1987- 8
1988- 9
1989- 90
1990- 1
1991- 2
1992- 3
To Nov.
1993
Total Children among N C
N C MB
PB Total
%
Deformity Gd.2 in N C
MB
PB
Total
%
4,696
68
773
841 17.90
8,274 120 1115 1,235 14.93
5,071
51 1016 1,067 21.04
6,445
43 1044 1,087 16.87
5,988
985 1,052 17.57
67
5,381
890
955 17.75
65
5,467
80
918
998 18.25
636
4,075
89
725 17.79
697
4,201
96
793 18.88
570
3,755 106
676 18.00
649
3,832 112
761 19.86
394
395
192
177
87
92
100
49
97
71
65
230
548
405
323
151
94
96
51
42
32
37
624
943
597
500
238
186
196
100
139
103
102
13.29
11.40
11.77
7.76
3.97
3.46
3.58
2.45
3.31
2.74
2.66
30
13
43
1.74
2,567
84
456
540 21.04
The next table shows gradual improvement in attendance rates, but still 24.30% nonattendance overall, highest non-attendance fortuitously being amongst PB patients.
31st
Mar
Cases on record
MB
PB
Total
1987
1988
1989
1990
1991
1992
1993
3 0 th
Nov.
1993
3,960 15,639 19,599 3,013 6,822 9,835 39.56
3,483
9,136 12,619 2,925 5,788 8,683 76.06
3,614
8,426 12,040 3,201 6,425 9,626 75.91
3,712
6,312 10,024 3,472 4,533 8,025 86.69
3,828
5,193
9,021 3,649 3,766 7,415 91.91
3,935 4,550
8,485 3,764 3,307 7,017 87.4
3,580
3,996
7,576 3,507 3,205 6,712 87.71
72
3,499
3,555
MB
Cases on MDT
PB
Total
% of attendance
MB
PB
Total
50.79
66.13
56.32
56.27
67.65
67.79
62.55
47.35
69.48
62.84
69.43
79.50
77.76
75.70
7,054 3,433 2,779 6,212 75.36 71.82 73.77
Reasons given by consultants and DLOs for numbers of new cases exceeding national
estimates were as follows:
"Phased implementation of MDT. Only 80% on MDT as yet.
Statewise, out of 19 districts only 5 are currently on MDT.
1 district may have around 8-10,000 accumulated patients.
There is much inter-District and inter-State migration.
It is planned that 7 more go on to MDT during 1994.
6 others are embarking on preparatory cleaning of registers and should go to MDT
in 1995.
Late diagnosis due to the stigma.
Some loss of the initial enthusiasm seen when MDT was first introduced. In the
initial period of the campaign patients expectations were high in regard to their own
felt needs, e.g. ulcers and deformity. They don’t know what leprosy bacilli are ...
cannot see when they go. Thus currently their enthusiasm is low.
Case Holding
The next table shows numbers discharged from treatment: Cured or "otherwise”. However
the term "otherwise covers patients who died and moved together with those who failed to
complete their treatment course. Thus numbers who failed to complete treatment are not
known. During the year 1993 up to November, 13.46% of discharges came into the
"otherwise" category.
Years
1982- 83
1983- 84
1984- 85
1985- 86
1986- 87
1987- 88
1988- 89
1989- 90
1990- 91
1991- 92
1992-93
To Nov.
1993
Disch,
total
Disch,
cured
Disch, otherwise
MB
PB
Total
144
299
3,562
6,569
7,358
7,382
5,357
5,978
5,091
4,248
4,277
0
12
3,217
6,083
7,012
6,643
4,954
5,248
4,416
3,765
3,748
144
287
294
345
207
156
129
239
274
209
286
0
0
51
141
139
583
274
491
401
274
243
3,112
2,693
202
217
%
Relapsed
144
287
345
486
346
739
403
730
675
483
529
100.
95.98
10.72
7.40
4.70
10.01
7.52
12.21
13.26
11.37
12.37
0
2
14
42
68
28
45
99
68
419
13.46
38
73
2.
PURULIA DISTRICT VISITS AND CONSULTATIONS
2.1
Personnel who are to be involved in the evaluation visit programme were met on
January 4th/Day 1 Purulia
Discussions were held with the Chief Medical Officer of Purulia District (CMO),
Dr.K B Sinha, at the Purulia office and Collectors House, on several occasions.
Personnel participating in the evaluation visit:
State Leprosy Officer, Dr.Chatterjee
Regional Leprosy Consultant (WHO) for WB, Bihar, Sikkim and Manipur Tripura, based
in Calcutta,
Dr.K C Das.
Dr.Das proceeded Drs. Rao and Mittal as Deputy Director General of Health
Services (leprosy), MOPH & Family Welfare, Govt, of India and actually created the
Leprosy Division.
Consultant Leprologist for the District, Dr.Halder,
Ex-Director of Health Services for WB. Was SLO in 1982 when the SIDA-supported
MDT programme commenced in Purulia.
District Leprosy Officer (DLO) for Purulia District,
Dr.Buddhadev Roy, whose special interest is ophthalmology.
DLO Bankura, Dr.M K Biswas.
For day 1 only:
Technical Officer at commencement of SIDA programme in 1982,
Dr.Ghosh. Now Leprosy Consultant for Bardaman district in West Bengal (WB).
Ex-DLO from 1985, Dr.Mahapatra,
who took over responsibility for the SIDA programme from Dr.Ghosh at the time
when SIDA direct supervision was replaced by local supervision. Dr. Mahapatra is
now a Demonstrator at Bankura Medical College.
2.2
Visits were paid to 4 Drug Delivery Points DDPs):
The 1st DDP was at KUDA, 1.5 hours drive from Purulia, was manned by an NMS
having 30 years leprosy experience and a PMW having 16 years leprosy experience.
33 patients were listed as currently on treatment now, 11 of them MB.
The 2nd DDP visited was at KANDITAH, and was held in frontof a PHC which was
in a very dirty condition. 28 patients were listed for treatment, 18 of them MB.
Both NMS and PMW had many years of experience, despite which their work was
seen as very poor. The MO responsible for supervision of this DDP is Dr.Debasish
Roy. (See Staff: MO notes).
74
The 3rd DDP visited briefly was CHATU HASA DDP. This was conducted in a
rural area and in the open with 3 beds as furniture. The NMS and PMW appeared
competent.
The 4th DDP visited was PURULIA BLOCK-I DDP in Pichasi sector and was held
in front of a PHC clinic. The MO, Dr.S K Dhara, has a Diploma in Dermatology
and is hoping to take up a Dermatology Post, though none fixed as yet.
DDP circuits are on specified days of every month, even if the day falls on a Sunday or
holiday - though extra special public holidays are exempt.
2.3
A visit was made to the Balarampur Leprosy Control Unit Office (State HQ of the
Gandhi Memorial Leprosy Foundation)
Discussions were held with their Project Officer Mr. Sudhakar Bandyopadhyay.
The Foundation serves a population area of 2,65,000 in 20 sectors set in 4 zones. The
prevalence rate is 2.14% and they currently have 564 patients on treatment. The project
staff includes 20 leprosy workers plus 10 support staff. The 4 NMSs each have motorcycles.
The PMWs live in the sectors in which they work and travel by bicycle ... maximum distance
8 km.. The workers spend 2 days per month taking clinics, 4 days following up and
motivating patients who did not attend or have problems, and the remaining 20 days in
their designated activity to identify new patients and reduce stigma.
2.4
The fourth day was spent in the neighbouring district of Bankura:
to visit the Regional Leprosy Training and Research Institute (RLTRI) and state
referral hospital at Gouripur, and
to participate in a monthly district leprosy meeting and compare reports of activities
with those in Purulia district.
75
THE PRINCIPAL ISSUES RAISED BY THE VISITS WERE AS FOLLOWS:
3.
THE IMPACT OF SIDA INPUT FROM 19824991
Several of the experts accompanying the visit had led the Purulia programme at the time
of the SIDA-backed MDT initiative. All greatly appreciated SIDA’s role in providing both
the stimulus and the funding for the initiation of the MDT programme.
The experience of the Consultants was seen to be helpful to the DLO. Dr.Halder travels
with the DLO for 5 days per month and Dr.Das, as regional adviser, visits several times in
a year.
Funding problems were being experienced after the withdrawal of the SIDA support:
for vehicle POL (petrol,oil,lubricant) and maintenance,
for non-MDT-drugs, such as Prednisolone,
for travel allowances,
for office rent, etc.
The standard of MDT in districts with and without SIDA funding are expected to be similar.
In practice, due partly to a serious lack of trained MOs and cessation of SIDA funds in
Purulia, the neighbouring Bankura district programme seemed to be functioning more
efficiently. The Bankura DLO also had public health experience and management gifts, and
an almost full quota of MOs to supervise LCUs, several with some years of experience.
It was disappointing to find that disability prevention target-setting and activity had
seemingly not be encouraged in any way by the SIDA input, despite prevention of disability
being one of SIDA’s stated aims.
4.
DRUG SUPPLY
4.1
MDT Drug Stocks at District Level
When SIDA took up the funding of Purulia, the supply of drugs was good. However there
has sometimes been dearth of drugs in recent years, in particular periodic dearth of
clofazamine for period of several months at a time. Rifampacin had been unavailable in
the district for 3/12. According to the DLO, difficulties experienced in getting drug stocks
were caused by:
76
a)
Communication gaps, e.g. the storeman not knowing when stocks are
available. The system is for the DLO to send an indent for MDT medicines
to the SLO who, according to his stock, allots medicine. If not in stock the
SLO advises the DLO when stock arrives. The responsibility for arranging to
have supplies collected lies with the DLO who arranges for the storeman to
go to Calcutta, usually once or twice per month.
b)
Delay in collection. It is 400 km Calcutta to Purulia by road.
Sometimes
vehicles break down or are full with goods for other departments such as
family planning. Transport staff get more TA if they travel more which is an
incentive for more journeys.
c)
Litigation between Government and the drug company at national level
caused some clofazamine supply problems.
SLO Recommendation: That MDT drugs be sent direct to the DLO as was the system when
SIDA was involved.
4.2
MDT Drug Stocks System Within the District
The LCU MO keeps the main stocks. The NMS keeps sub-stocks.
The NMS comes to the clinic and gives needed drugs to the PMW.
The PMW can stock Dapsone but not Rifampacin or Clofazamine.
In theory there should be an NMS at every MDT clinic ... only when he is on leave should
he give the medicine to the PMW. However, the NMS may not always be able to get to all
clinics. Thus the PMWs must always contact the NMS before their circuit days .. and will
receive packaged medicines for expected patients if the NMS will be unable to go to the
DDP.
The second DDP had been without Rifampacin for 9 months, compared with 3 months at
other DDPs, due to a local organizational problem.
4.3
Prednisolone and Other, Non-MDT Drugs
Prednisolone can be obtained through the Central Medical Stores (CMS) in Calcutta. For
the past 2 years the policy has been to decentralise. Now 38 drugs and other materials such
as gauze, cotton wool are listed as recommended for normal Government usage. There are
other lists of less commonly needed drugs including Prednisolone. The CMO has to choose
how to allocate district funds. Bankura still receives 12,000 (0.12 lakh) rp per annum in
special SIDA funds and can use these to buy extra drugs, whereas this extra funding has
ceased in Purulia. See "Other drugs, C iv" on p.75 in NLEP Guidlines. The drug company
selected by the CMS to supply Prednisolone has an agreement that supply must be at the
agreed rate of 28rp per 100 tablets X 5mg.. However, the market price is currently 40 rp..
77
Hence the drug companies are reluctant to sell to the CMS. Thus Prednisolone is often not
available through leprosy staff when prescribed. Patients needing it are advised to buy for
themselves, but it is often not available for sale in the market and, where it is available,
patients see it as expensive.
Any leprosy program stocks of Prednisolone are kept and prescribed by the MO.
Consultants say that on average each ECU has 20 patients needing Prednisolone at any one
time. Roughly 10-15 recent paralyses are diagnosed per annum. The usual starting dose
given is 30 mg.per day, tapered off at a speed guided by improvement (mainly in pain
levels). Higher dosage, e.g. 80 mg.per day, can be given to hospitalised patients.
Two
patients seen at the 4th DDP had acquired their nerve lesions while receiving treatment. In
neither case had Prednisolone been available from the ECU. The patients had bought
insufficient quantities, only enough for 1 month.
5.
MULTI DRUG THERAPY
Fixed duration course orders were given in September 1993, though are not yet being
implemented. The DLO noted that they would have liked to be allowed to continue MDT
for 4 years for patients in whom signs of disease activity are perceived. According to NLEP
guidelines defaulters should restart treatment if defaulting for more than 1 month (PB) and
2 months (MB). In practice there are longer gaps.
Treatment registers were well kept in three of the DDPs. In the 2nd DDP the register was
very disorderly with no lines drawn and many absentees shown.
According to district data, currently 73.77% are regular, 26.23% irregular. There was good
attendance at the 4th DDP but a lot of absentees in particular at the 2nd, some of them
being young, e.g. one boy aged 14 and one young lady aged 24. Several had taken treatment
for several months before defaulting. One female who defaulted after 3 months said: Tm
much better now. The leprosy will clear itself. Only one of several defaulters discussed
was reported as giving a medical reasons for stopping, in the form of repeated ENL over
2 years.
Numbers who complete their MDT course are reported on p.a.. However the data does not
show percentages of patients who default rather than completing their treatment course as
numbers of the former are combined with numbers who died or moved under a general
heading "otherwise". Bankura district have added separate defaulter information.
Dr.Mahapatra: Prevention and care of disability would be a motivating factor for patients,
encouraging attendance regularity. The effectiveness of the leprosy programme needs to be
clearly perceived by patients.
78
6.
GENDER ISSUES
6.1
Numbers of male patients seen far exceeded female patients
Gender-orientated data is not available at district level, though could be gleaned from
patient cards. It seem important to check new case finding indicators, compliance indicators
and disability/dehabilitation indicators for male/female differences. Were there differences,
reasons behind them would need to be investigated and the implications for programme
management.
6.2
Social effects of deformity
A girl affected by deformity will rarely marry.
If a married, leprosy-affected lady develops deformity prior to having children,
she is likely to be turned out of the house.
She will probably return to her mother if she accepts her, but otherwise may
become a beggar unless able to work.
If she has had children before developing deformity, she will be allowed to
stay but will be neglected.
In contrast the man is "the lord of the house" so is not so treated. His wife is
obliged to stay with him.
Tribal ladies are evidently more free and treated with more equality, working side by side
with their husbands in the fields. It is accepted that they sometimes reject and leave
husbands, as was the case with one male, tribal patient seen whose wife and child had
moved in with his brother’s family.
6.3
Could ladies be PMWs?
There was much discussion regarding the possibility of having female PMWs but this seemed
to be impractical on the grounds:
that babies need attention = the main difficulty for travel,
that few ride bicycles, and
that "it may not be safe" for a woman to travel alone in the
countryside.
On the other hand some staff said that many Multi Purpose Workers are female, and they
travel, though less than leprosy workers.
79
6.4
Privacy
The 1st DDP was held in a very public place on the pavement in front of shops, on a busy
street. Another was in a secluded, rural spot. Two DDPs were beside PHC centres where
some privacy could have been sought. At the 4th DDP, reminded by our presence, the LCO
suggested that several ladies be examined in a quiet room in the PHC and this was
arranged. Apart from this no attempt was observed to provide privacy for ladies being
examined. Although a PHC should be allocated a female worker as well as a male worker,
there was a vacancy at this centre.
Culturally it is difficult for ladies to be examined at all by men. They only allow their
bodies to be examined:
up to their knees, and
their backs by lifting up their blouses from behind.
At the first DDP an attempt was made to examine in public a girl, aged around 10,
suspected of having leprosy. Examination was incomplete, for example excluding buttocks,
because conducted by males and in public. Female patients seen were asked to get their
mothers to check for patches and to report on these the next month. Staff say that PMWs
may visit their homes, but even then it might be difficult for a male PMW to examine them,
though a male doctor would be allowed to make a fuller examination. To speak would also
be difficult for shy ladies, when surrounded by a crowd of male onlookers.
Lack of privacy is likely to discourage ladies from attending.
6.5
Female representatives on the panchayat are very committed, know the women in
their area and can be very helpful
7.
LABORATORY FACILITIES/SMEARS
7.1
Checks for smear quality
Smear cross checking was carried out 2-3 years ago:
a)
b)
2 leprosy lab workers checked the same slides There was 25-30% variation.
Findings were cross checked with the Leprosy Mission Purulia laboratory.
There was nearly 30% variation.
The DLO would like to use The Leprosy Mission services more often for cross-checking but
lacks funds to pay for this service.
80
7.2
Laboratory facilities
There are laboratory facilities in 3 of 5 control units in
the district, manned by 5 laboratory workers altogether. The DLO reported that only 4 of
the 8 sanctioned microscopes are currently working. Field programme staff say that they
lack access to laboratory facilities other than for skin smear examinations and MI, and to
X-ray facilities.
7.3
Smears and classification
At the second DDP:
Two smears taken during the clinic both included blood.
Many patients had had no smear taken or were overdue.
According to the SLO and Advisers:
- 3 patients classified as MB should have been PB
- 1 patient had relapse wrongly diagnosed.
8.
FUNDS
8.1
Funding during the SIDA support period
DLO: Up to 1990 the district received 5 lakhs rp.from the central government (including
SIDA funds). This included 12,000 rp.per vehicle p.a. for maintenance, incentives and cycle/
motorcycle allowances. At that period the vehicles could be well maintained.
8.2
Funds owing from the SIDA period
However 1.5 lakh rp.for Travel Allowances (TAs) is owing from the SIDA period, for staff
incentive payments due for the first three months of 1991, just before the incentives stopped
from April. Lack of this back-payment is a dis-incentive for staff, however well-motivated.
8.3
Funding since the cessation of SIDA funding in April 1991
The District Society was established during the 1991-2 financial year to provide funds for
maintenance of the work, e.g. for travel allowances, vehicles, electricty and telephone.
However, there have been district funding problems since 1991, reflecting national funding
problems. The DLO describes State Government funds as meagre ... 4-5000 rp for
contingencies for each of the 6 leprosy control units.
81
Funds for travel allowances (TAs): 2-3,000 rp p.a. are allocated to each LCU to cover TA
costs incurred by 20 PMWs, 2-3 NMS, 1 MO plus clerical and other staff (e.g., laboratory
technicians and peon messengers); however, the DLO reports that annual requirements are
nearer 10,000 rp. minimum. Available funds, as they arrive, are given out in settlement of
claims in order of their submission. Priority of permission to incur TAs is given to MOs and
clerical staff going to Calcutta for office works and to staff attending monthly staff meetings.
State funds for maintenance of vehicles and POL are proving insufficient. To help with
current funding problems, The Leprosy Mission have released a fund of 3 lakhs rp for
vehicle POL for the year 1993-94 and have sanctioned 25,000 rp for repairs.
PB cards were seen being used for MB patients at some DDPs due to lack of funds for
replacement of MB cards.
9.
HEALTH EDUCATION
9.1
Health education activities in Purulia
This is seemingly not organised systematically in Purulia District, though staff do undertake
some teaching, especially giving talks at schools and through discussions with people who
show interest in learning about leprosy.
School surveys are preceeded by talks for scholars and teachers, teachers being encouraged
to report any patches that they see. A 16mm movie projector and film are available at State
level for use in giving health education in schools, at seminars etc..
Education of panchayat members is found to be helpful. The panchayat system is strong.
Its members are elected by the community and include one third women. A village of 5,000
people will have 2 representatives, by law 1 should be male and 1 female. The females on
the panchayat are very committed and know the women in their area. Panchayat
representatives, having been shown pictures of early signs of leprosy, may go with a PMW
to find suspected new patients. Despite these activities, Purulia seems to have a much less
active and structured programme of health education than Bankura. There is no evaluation
by means of questionnaires to determine whether or not health education has improved
understanding of leprosy or acceptance of those affected by it.
9.2
Health education activities in Bankura
Bankura has the advantages of having 7 MOs in addition to the DLO, many of them having
several years of leprosy experience. Bankura also receives strong support from a Leprosy
Mission health education team in Bankura.
82
Notes on Bankura 1993 activities:
The Leprosy Mission have a Health Education unit in Bankura district which moves
in the field according to a schedule and which responds positively to DLO requests
for help.
The leprosy team have met all panchayats and Integrated Child Development
Schemes (Women’s groups caring for children up to age 6 and for females aged 1444 = child-bearing age ... immunizing, nutrition etc. 3/12 training courses). They teach
early signs of leprosy and list treatment dates for all panchayats, women’s groups,
health workers, MOs, some medicine shops. The groups then refer cases. At PHCs,
a notice has been painted on the wall to give leprosy treatment dates and 4-5 salient
features of leprosy together with the advice "don’t fear" and "it may not be leprosy".
A written appeal was sent to all head teachers describing salient features. Use slides.
When films are required, ask TLM who are very helpful.
Special Drives in Bankura during the year:
Stratified random survey No.93I/O to estimate the present load in the district and
give indirect propoganda to the NLEP.
Meetings with all the 19 Panchayat members: 19 at samity level and 171 at anchal
level.
Painting notices on the health point walls X 116 at the BPHC/PHC/SHC/SC level
indicating salient features on leprosy and "pulse calendar" (clinic timetable)
Distribution of pulse calendar to all concerned.
Distribution of MDT Q and A to all PH Centres and local practitioners
Meeting with all Health Staff of the 22 Blocks in the District and ICDS staff with
slide projector.
Meeting with PHC Indoor Nursing Staff and Teachers of the GNN Training School
of BSMC&H, Bankura.
Voluntary reporting percentages in Bankura had gone up since an extensive health
education campaign was commenced in 1992 ... from 37% in both 1990 and 1991 to 42%
in 1992 and 52.35% up to Nov.in 1993.
9.3
Health education activities carried out by the Gandhi Memorial Leprosy Foundation
Gandhi Memorial Foundation activities in one unit of Purulia District are largely centred
on Health Education. Foundation staff are undertaking a systematic study and programme,
though
being less busy than most Government projects allows time for this, Patients were
subdivided initially into 3 groups:
83
Group A (10,000 population) focusses on contact survey (6 staff).
Group B (10,000 population) focusses on mass survey (6 staff)
Group C (65,000 population) focusses on community health education (3
staff).
Groups A and B were reversed when the next survey was carried out. 152 of the 402 new
patients detected in 1993 were found through some sort of contact survey, including 24
through case contacts and 3 through schools surveys. However groups with a health
education focus were found to have the best case detection rate. The % of new cases
having disability has lessened from 20.4% in 1977 to 2.7% (11 of 402) in 1993, ALL of the
latter being from outside their area. There is a huge migration of people (mostly tribal)
coming from Bihar as a result of a new dam construction in Bihar, and many patients are
migrant workers travelling to plant rice for 2/12 p.a. and to harvest it for another 2/12.
Despite this the MDT compliance rate is 96%. Tablet counts have verified compliance in
1,281 out of 1,421 MB patients and 2,373 out of 2,728 PB patients.
The Gandhi Memorial Foundation programme health education activities include many slide
presentations, puppet shows and talks. Slides can be used as long as there is electricity or
if their jeep is working so that they can transport their generator, puppets, etc). Groups
covered include:
397 schools have been covered in 1 year,
Panchayat meetings,
National Cadet Corps, Scout and Guide meetings,
Women’s groups.
The film and puppet show have to be transported by jeep, as does the portable generator
when slides are used in situations in which there is no electricity. However their jeep has
been out of action for 1 year and they are hoping that someone will donate a new one.
9.4
Communication with patients
Communication was generally kind but almost exclusively "one way", with patients not
usually being asked for their views atall but rather "advised". At the second DDP The
attitudes of both NMS and PMW towards patients was very brusque and would not
encourage either confidence or regular attendance.
The 1st DDP was outside a PHC centre and seating for waiting patients could have been
arranged. At the 4th DDP patients were seated both when waiting and when examined.
Lack of sensitivity to ladies’ privacy is commented on under gender issues.
84
10.
STAFF AND TRAINING
10.1
Staffing levels
The table below shows the staffing position during three periods: in 1986-87 during the
SIDA support period, in 1991-92 at the close of the SIDA support period, and currently.
Note particularly the shortage of trained Medical Officers to supervise field work and of
physiotherapy technicians to assist in action to control disability.
At the same time, due to the significant reduction in case load there is now over-staffing of
PMWs and NMSs: 91 PMWs were responsible for treatment between them of 3,832 patients
on treatment 1992-93, i.e., on average only 42 patients per PMW, 274 per NMS and 1,277
per MO. One PMW encountered during the visit now conducts only two DDP circuits per
month.
Field staff have of course other important tasks such as health education, surveys,
counselling and tracing of defaulters. However a serious problem is the paucity of MOs
trained in leprosy to supervise the work and maintain quality of service.
S = sanctioned
POSTS: E = existing
T = trained
S
E
T
S
E
T
S
E
T
District Lepr.Officer
1
1
1
1
1
1
1
1
1
Medical Officer (MO)
6
4
3
6
4
2
6
3
2
Non Medical Supervisor
17
13
1
16
12
11
16
15
14
Para Medical Worker
99
*26 under training Jan.’94
91
24
96
88
56
96
91
85*
Laboratory Technician
**1-2 weeks orientation
5
5
5
5
5
5
5
5
5**
Physiotherapy Technician
6
1
1
6
1
1
6
1
1
Health Educator
1
1
1
1
1
1
1
1
1
Driver
6
6
6
4
6
5
Clerk
7
5
9
8
9
8
1986-87
To Nov.1991
1991-92
85
10.2
Doctors’ activities and problems
The DLO: The DLO travels for 5 days per month with Dr. Halder and would like to travel
for 5 other days per month on his own. In practice he manages 2 extra days rather than 5,
totalling 7 days per month in the field. He cannot go more often because of fuel costs.
He is sometimes given other health duties, or has to do office work in Calcutta with the
SLO.
MOs: Vacancies, lack of training and in some cases lack of motivation were serious
problems in Purulia district. Work at the 2nd DDP in particular suffered from lack of
supervision.
The majority of MOs evidently stay for only 2-3 years, though one stayed for 20 years and
one for only 6 months. At present 3 other of the MOs have dual charges, none of them
having had with leprosy training and none really interested in leprosy.
Example: Dr. Debasish Roy’s leprosy work is additional to his work at a health centre, and
is theoretically for 2 days per week, for supervision of 3 sectors having between them a total
of 20 DDPs. During his 3 months of leprosy work he says that he has visited only 4-5 of the
20 DDPs. To cover all DDPs would require 15-16 travel days. He seemed to see his main
leprosy job as conducting monthly staff meetings + undertaking administrative tasks. Dr.D
Roy says that he needs leprosy transport but could have used the PHC vehicle to make
more visits had he deemed it important. The DDP nearest to his office is 16 km distance,
the next a further 8-9 km.. Dr. D. Roy started the leprosy work 3 months ago and is
expecting to be transferred elsewhere after 2-3 months, to be nearer to his wife who works
100 km.away. The doctor who will replace Dr. D Roy will evidently be a full-time leprosy
doctor. Another MO, Dr.S K Dhara, has a Diploma in Dermatology and is hoping to take
up a Dermatology Post, though none has been fixed as yet.
According to the Consultants, there is a serious motivation problem in regard to doctors,
many not liking to work in leprosy programmes because:
there is no future in the work,
they gain narrow experience not useful in their future careers,
they are pressured by the system to take post-graduate training, and
there is some stigma still attached to staff working with leprosy, though this
situation is improving.
There was discussion with consultants and DLOs as to what action,if any, might improve
doctors’ willingness to work in leprosy programmes. Their suggestions were:
"Reserve some post-graduate places for doctors who have persevered in
leprosy work for 3-5 years"
86
"For the India Medical Council to sell the concept that leprosy training is
valued as important as a preparation for careers in dermatology, surgery,
ophthalmology and neurology."
Question: "How much training in leprosy is given during doctors’
training courses?"
Dr.Debasish Roy said that his general medical training in Calcutta included
a total of 15 days on dermatology, little on leprosy.
During Community Medicine Training Courses in Bankura, Dr. Mahapatra
gives 10 lectures on leprosy but says that this is atypical. He tries to arrange
for doctors see patients during the training but often fail due to transport
problems.
The basic textbook on community medicine includes 7 pages on leprosy
written by Dr.Parke who worked in A.P. State. Cochrane’s book on leprosy
is in the library.
The SLO plans management training for 50 in Calcutta, for the 18 DLOs, senior NMSs,
superintendents of leprosy hospitals, physiotherapy staff and laboratory technicians.
10.3
Non-medical staff
NMS: The consultants consider that NMSs need supervision:
because they are selected for the job by seniority rather than ability, and
because they are not trained or skilled in management tasks
Of 15 NMSs in Purulia district, Dr.Halder and the LCO reckon that 7 work satisfactorily
and 3 poorly. 4 are new and learning. One NMS post has been vacant for the past 7-8
months.
Regarding the appointment of a District physiotherapist, a SLO stated: "One has been
appointed for leprosy work but has no leprosy programme and so is doing orthopaedics".
A leprosy hospital can appoint a physiotherapy technician, however a State Leprosy post
must be filled only by a 3 year physiotherapist.
10.4 Training undergone by present staff
Both Dr. Dhara and Dr. Chatterjee have worked in leprosy for 3 years. Both underwent
leprosy training only after they had worked for nearly one year. At present 3 other of the
MOs have dual charges, none of them having had leprosy training. One has worked in
leprosy for 3-4 months, a second who has also worked for a few months expects to be
transferred in February or March 1994. The Manbazar MO has worked in leprosy for
nearly 2 years. It is expected that he will take over the job of Zonal DLO and thus is likely
87
to receive leprosy training.
From November nearly 25/26 PMWs were sent at the same time, and at short notice, for
4/12 PMW training. Some are new. Others have worked for 4-5 years. The DLO had
requested that the 26 staff be trained in 2 batches. To take so many at once is bound to
create problems in managing the field programmes. Had 1-2 staff been taken at one time
from one LCU, the sample survey planned for 1993 could still have been conducted.
The Bankura State Referral Hospital physiotherapist says that he has had no training in
leprosy and showed no knowledge of basic leprosy physiotherapy tasks.
11.
SURVEYS AND VOLUNTARY REPORTING DATA
Prior to the introduction of MDT, a first, rapid mass survey was carried out. In July 1988
a second round of general population survey was started, continuing for the next 3 years ...
and followed up by tracing of those who had been missed.
Since that time, mid-1991, there have sometimes been special surveys. School surveys are
always done. However the DLO is not aware what percentage of schools/contacts have
been covered. He reports that approximately 57% of new cases are identified during
surveys of one sort or another such as school/contacts/general. Numbers of patients found
through different surveys: unknown.
Percent of new cases reporting voluntarily to LCUs is as follows:
1
1982
1987/88 = 54% |
88/89
41%...
89/90
36%
90/91
54%
91/92
48%
92/93
45%
93/NOV.94 48%
Pre 1982 MDT, 1st rapid mass survey
In July ’88, 2nd round of gen.pop.survey
continuing for next 3 years
followed by tracing of people missed.
Since that time there have sometimes
been some special surveys.
1993 survey plans:
PMWs were asked to do school and contact surveys during the rainy season,
to be completed by Puja (November).
Stratified,random surveys scheduled for November 1993 were postponed until
February 1994 because 26 PMWs were sent for 4 months of training.
83
From 1994 the DLO plans to organise yearly school and contact surveys more consistently.
In the Gandhi Memorial Foundation programme, 152 of the 402 new patients detected in
1993 were found through some sort of survey, including 24 through case contacts and 3
through schools surveys. However, intensive community health education proved more costeffective in identifying new cases.
There is seemingly an urgent need for a sample survey, similar to those used in the initial
survey conducted by Dr.Chowdhary. At the termination of the SIDA contract after 8 years
there was no repeat survey. Thus no-one knows the real position at present. Dr.Das
estimates the cost of a stratified sample survey as 2.5 lakh rp (including TAs). The 1994 plan
is to examine a total of 10% of the people to be examined, stratified according to
prevalence, MB/PB and tribe/caste groups.
12.
VEHICLES
Four of the seven sanctioned vehicles, all diesel jeeps, are currently on the road.
Up to the end of 1990, the DLO had funds for vehicle maintenance and POL (petrol, oil,
lubicants). At that period the vehicles could be well maintained with the help of SIDA funds
of 12,000 rp per vehicle p.a.. For the past 2-3 years there have been funding problems.
There are 6 sanctioned vehicles for 6 Govt, units plus one SIDA vehicle, which is still in
running condition.
Out of the 6 Government vehicles, only 3 are currently in running condition,
7-8 years old. The other 3 vehicles need beteen then at least 50,000 rp.
The SIDA vehicle also needs bodywork repairs, etc. costing 10,000 rp.
Two vehicles have been out of order since 1991.
Thus a total 60,000 rp needed.
Currently a Government fund is available for repairs and, in theory, for running costs. In
practice the DLO has had to turn to The Leprosy Mission which donated 300,000 rp towards
vehicle fuel (permitted for repair only up to 25,000 rp) and motorbike and cycle allowances
as well as for health education and some general medicines for the year 1992-93.
89
13.
DISABILITY CONTROL AND REHABILITATION
13.1
Disability and dehabilitation data
There is almost no information available regarding numbers of present and former patients
in the district who are disabled and/or otherwise dehabilitated. Rough information
regarding deformity in MDT patients could be collected from individual patient forms.
However sensation records, as checked during field visits, were not reliable.
a)
WHO deformity grading:
is ascertained from the body charts but several mistakes were observed. For example
4/11 MB patients at one DDP were recorded as having grade 0 deformity, but two
of the four did have disability, one each grade 1 and 2
b)
Testing and recording of sensation and strength:
Quality of sensory testing and recording was inadequate. For example, in one patient
staff had recorded complete loss of dorsal sensation on a hand, with no loss of
palmar sensation whereas, in fact the patient had an ulnar nerve lesion with complete
sensory loss down the ulnar border of the hand and little finger (both aspects) and
three finger clawing. A second patient had a dropfoot which was recorded plus an
insensitive sole which was not recorded.
c)
Patient cards were checked for signs of disability at two DDPs
Of the 36 patient cards checked at the 2nd DDP visited, 12 cards (33%) showed
disabilities:
1 showed unilateral lagophthalmos,
3 showed complete loss of hand sensation (2 bilaterally,
1 also
showing loss of all fingers and both thumbs),
7 showed had foot sensory loss (2 bilateral, 2 dorsal sensory loss only,
1 also had unilateral loss of toes),
Of 37 who attended for treatment at the 4th DDP during the day of the visit (not all
present at the time of the visit), 7 who were examined were found to have disability:
Most were young and at serious risk of worsening disability.
Two had acquired their nerve lesions whilst on treatment
The disability grade had worsened since diagnosis in at least 3 patients,
2 due to new nerve lesions and 1 due to a wound in an insensitive foot.
Worsening in some other patients would not result in a change in
grade.
2 required and wanted surgery, 1 for footdrop and the other for ulnar,
4-finger clawing.
90
13.2 Action to control disability and dehabilitation
It was clear that staff lack training and expertise in action to prevent worsening of
disabilities and to rehabilitate.
a)
Social problems.
In the 4th DDP a young woman was diagnosed as having leprosy, but the fact that her
father had been cured seemed to give her confidence and render her unafraid, which was
encouraging.
In contrast another young unmarried woman, cured and with no disability, came to one
DDP very worried lest she be getting a new leprosy skin patch. This was a false alarm, but
it is important that staff check with her and her parents lest the former diagnosis is causing
problems, for example affecting her marriage prospects. Attempts need to be made
routinely to identify and overcome any such problems.
At the 4th DDP a youngish male with highly active leprosy from a very poor tribe came for
treatment. Dr. Das took the trouble to visit his home and village, to examine and reassure
contacts and identify the family problems. The patient’s wife and children are no longer
sleeping with him and are presently living in the same compound but at the house of his
brother and family and this problem needs attention to halt social dehabilitation.
b)
Preservation of nerve function where deteriorating.
Many staff had not been taught that Prednisolone could encourage sensory recovery as well
as strength recovery and would not therefore have prescribed Prednisolone for "silent",
recent sensory loss.
Two patients seen at the 4th DDP had acquired new nerve lesions during treatment. In
neither case had leprosy staff been able to supply Prednisolone. Thus both patients had
agreed to buy some for themselves, but only for 1 month instead of the widely accepted
minimum for new nerve lesions of 3 months. One of the two was a young man who began
treatment on 6.11.90. with no disability was found to have reaction on 11.12.91: pain and
tenderness in nerves in all 4 limbs and feet oedema. At that time his dorsiflexors became
weak (VMT grade 4), which was noticed, and he suffered then-unnoticed loss of sensation
under his right forefoot and left heel. At the time he was given a referral letter for The
Leprosy Mission hospital, but did not go due
to the expected cost. No Prednisolone was in stock at that time so he was advised to buy.
He bought enough for low doses for one month ... 15mg X 15 days + 10 mg.X 15 days. He
reported that there was useful improvement in foot strength and reduction in oedema, but
sensory loss remains.
91
A third, cured patient reported at the zonal centre with loss of sensation and strength
incurred 3 months previously. Prednisolone was prescribed.
ENL reaction had been treated with Clofazimine, Paracetomol and Prednisolone when
available or if the patient could buy it on the market.
c)
Lifelong self-care of eyes and limbs affected by peripheral nerve dysfunction.
Simple advice regarding exercise and avoidance of injuries is given to patients with nerve
lesions and some have obviously been helped by this advice. A limited number of patients
buy protective footwear from the Leprosy Mission Hospital. However care-problems
revealed by neglected wounds and callus are seemingly not being identified and solved and
worsening of impairment was seen in a worrying number of patients. For example:
One patient had both an MH3 ulcer and a short middle toe, neither of which were
recorded on his initial body chart, i.e. his deformity has worsened, his disability grade
remains at 2. He thinks that MDT will solve his foot problems and is not taking foot
care, even though the PMW can advise that he should use protective shoes and do
passive and active foot exercise.
A lady had a partial dropped foot (EDL was paralysed) and an MH1 ulcer which she
says has been healing and recurring for 2-3 years. Is wearing Hawaii slippers costing
12 rp. Needs protective footwear costing about 60 rp. Zinc tape has been advised but
is expensive. Possibly needs surgery.
A younger male patient had had a dropfoot for 2 years. Sole sensation normal. No
other disability. Needed a dropfoot support and surgery. Stays at grade 2.
A male aged 35 was on the verge of becoming seriously dehabilitated. He had:
unilateral lagophthalmos (approximately 5 mm gap on tight
closure and
some exposure keratitis),
bilateral ulnar/median claw hand with a serious fingertip injury caused by
collecting stones from the ground using bare hands (staff will now try to get
him a rake),
bilateral loss of sole sensation with bilateral heel ulcers and a unilateral 1st
metatarsal head ulcer.
A cured patient with bilateral hand sensory loss, left ulnar paralysis and one
wound on each hand. Mentally slow but accompanied by an intelligent man
who seemed able to identify probable cause of left hand thumb base wound
as grasping a tool. The NMS to visit his home/try to determine cause and
avoidance plan. Stays disability grade 2.
92
One man had an open crack in the heel area. He says "cracks heal in summer" and
is taking no care. When asked what he had learnt he said "oil", but had no idea of
soaking and rubbing and possesses no oil. Demonstration of skin care proved
possible at the clinic. Disability grade 1 on diagnosis. Now grade 2.
A middle-aged lady with sensory loss in medial 3 toes and 1st to 3rd metatarsal heads
and an imminent crack at her big toe IP joint. Disability grade 1 on diagnosis and
now.
A 30-year old lady with left forefoot anaesthesia of the sole and an MH2 ulcer
(possibly also diabetic). The ulcer appeared around June 1993 following a painful
blister. Since then it had sometimes healed and sometimes recurred. She says that
she usually wears Hawaii slippers but is currently wearing hard sandals with a
prominent nailhead under MH1. A hammer was obtained and the nail head
flattened. Teaching re footwear and wound care were given. Disability grade was
1 on diagnosis, 2 now.
A 24-year old male having bilateral ulnar nerve lesions, sole sensory loss and an open
heel crack. Disability grade was 1 on diagnosis, 2 now.
Simple field measures and/or protective footwear would help a number of the above.
d)
Protective footwear is needed by all with sole sensory loss. For example:
A young man whose soles were largely insensitive, but who was not referred to The
Leprosy Mission for protective footwear due to a mistaken belief that even very poor
patients had to pay for these.
One patient was wearing shop-bought, enclosed, plastic shoes which have given him
an injury medial to MH1.
The 30 year-old lady with forefoot sensory loss and a wound recurring since June
1993 urgently needs the footwear.
e)
Reconstructive surgery
A young man with ulnar paralysis and 4 finger clawing who needs surgery when slight
PIP joint stiffness and extensor muscle inefficiency affecting index and little fingers
have been overcome. Exercises taught. Disability grade 2 at diagnosis and now.
Two men needed surgery for a complete dropfoot and one lady for a partial
dropfoot.
It seems important that the DLO and Consultants talk with The Leprosy Mission referral
hospital superintendent to clarify what services the hospital is able to offer to patients
unable to afford services and how application should be made. Dr.Das suggested that the
Government might be able to offer a contribution to costs, such as 100-200 rp towards an
93
operation for a patient unable to contribute.
13.3
Funds for welfare activities
In theory each ECU should receive 5,000 rp p.a. from the State Government, paid through
the Society -- 50% of it for health education and 50% for welfare activities (protective
footwear being the priority). In practice, Purulia District receives 4-5,000 rp p.a. to be used
for health education only, i.e. The State Government is not able to replace SIDA funds.
The District Society’s only funds in 1993 were the 3 lakh rupees given by The Leprosy
Mission.
No use being made of loans offered by banks and for which staff in some areas are helping
their patients to apply for. Staff say that there are social workers who might be able to help
do this if they knew what to do. (Notes: Dr.Peters of DANLEP is making up a list of
resource agencies. The Leprosy Mission would be able to give advice).
13.4 Examples of earlier West Bengal rehabilitation schemes
Dr. Das described three "care after cure" schemes in West Bengal, one of them for TB
patients:
Care by the family. A patient, who is a potential beggar, lives in a State funded
room beside the family house. This was a scheme to prevent beggars and encourage
jobs in one poor block (a block = a section of an ECU). The scheme was successful
but difficult to multiply.
Sheltered workshops were set up for tailoring, carpentry, typing etc. for ex-TB
patients, living in a sanatorium.
Hindt Kusht Nivaran Singh started up a scheme, which had a WB State branch, to
help cured but destitute ex-patients. It was a good scheme but they have only been
able to resettle 25 families.
94
VARANASI VISITS AND CONSULTATIONS
1
INTRODUCTION TO VARANASI VISIT
Varanasi is one of 64 districts in Uttar Pradesh State. Population is 47,98,000 (1991 survey).
28 of the 64 districts in U P State are now on MDT. 14 more will commence MDT on
10.1.94. The Varanasi district MDT programme commenced on 1.8.1985, following the
obligatory population survey covering 90% of the population. A District MDT Society was
started on 11.2.1992.
% Decline/ D
% Increase/I
Before MDT
1985
1993
Prevalence rate
36,89,908
(in 1981)
6.40/1,000
47,98,729
(in 1991)
0.42/1,000
93.43%
D
N C detection rate
0.34/1,00
0.02/100
94.11%
D
MB rate among N C
41.57%
27.21%
Child rate among N C
14.83%
9.80%
33.78%
D
Monolesion PB rate
14.40%
24.45%
Relapse rate
Nil
0.71%
Deformity in N C
(WHO grades 2/3)
10.03%
3.49%
65.20%
D
Voluntary reporting
among N C
2.88%
32.57%
91.15%
I
District population
NC = New Case
There are now 2,027 patients on treatment, i.e. under 100 pts.for one NMS and only 20-25
per PMW. They are still getting 65-100 new patients per month.
There are 7 LCUs plus 1 urban unit totalling 8 units. The number of DDPs has been
reduced as the case load has fallen. There are no temporary hospitalisation wards,
reconstructive surgery facilities or rehabilitation centres. Twenty-two PHCs are functioning
in the district.
95
Number of cases with grade 2/3 deformity:
Old cases 1,504
New cases 1,537
total of 3,041
Senior colleagues met during the visit:
Dr.P L Joshi Regional Director of H & F (Health & Family Welfare), Govt.of India, UP
Region, Lucknow, was introduced on day 1.
The following senior colleagues accompanied all DDF visits and were involved in discussions
regarding the work:
Dr.S C Bhalla
NLEP Consultant for UP, based in Lucknow.
Dr.S N Singh
DLO, Varanasi
Dr.S P Singh MO, Urban Leprosy Unit, Varanasi
2.
DESCRIPTION OF PDFs VISITED AND PATIENTS EXAMINED
PDFs VISITED ON DAY 1
1st DDF:
In a village, by the side of the road, surrounded by a crowd of men onlookers. Bed
available to sit on. PMW arrived late but seemed serious. He is responsible for 8 DPPs,
taking 2 per week. Has a motorbike. Records were in good order but Clofazamine was
missing for two 3-month periods and one 1-month period 1991-Dec.l993. Rifampacine was
missing for one month.
Eight patients were listed, of whom four were seen. Of the others:
1 has defaulted to take local medicine after attending 10 times. Had insensitive feet.
It was not clear why he had lost confidence in treatment after so many attandances.
The PMW was encouraged to find out why.
1 is now taking medicine at a leprosy hospital nearer to his home and thus should
have been officially transferred.
Pt.l:
96
- On rx. 4 months. Large clear body patches. Pt.says that these are fading and
regaining sensation. MB.
- Smear was taken 4 months ago but no result as yet.
- Sole sensation was tested with patient lying on the bed, eyes closed, touched by a
feather and saying "yes" occasionally when his sole or leg had been stroked more than
once. Not satisfactory for follow-up purposes.
- Two strength tests:
One = finger flexion (not OK).
Second = pinch (OK).
Neither strength nor sensation records are repeated routinely.
Pt.2
and 3:
Neither with completely clear diagnoses.
Pt.4:
Came for surveillance check.
Only one female patient was listed to attend and her medicine was collected by her brother.
No record is made when proxies take the treatment. Impossible situation for a lady to be
examined in, so they say that they examine ladies at home.
Of the 8 patients’ cards only the defaulter had disability = bilateral sole and dorsum sensory
loss, grade 1. The PMW has seen him only once since he defaulted some months back.
2nd DPP:
In the store room of a cooperative.
Pt.l:
Pt.2:
Originally had 5 bilateral patches but was classified as PB. Completed 6/12
treatment but relapsed 2 years later. Now regular on MB treatment.
MB pt.who missed 7/19 Clofazamine doses (including those due 10-12.93) and 1/19
Rifampacine doses.
Pts.
3 & 4:
(from Cards) Both were extending their MDT course (for 3 and 5 months to
date) to cover the period in which one or other of the MDT medicines was
missing.
3rd DPP:
At a voluntary organisation health centre (R.C./Buddhist). Not their DDP day so just saw
the cards and a disability register.
Checked the cards for disability and found only 4 MB grade Is. Grade 2s are listed
in their disability book.
Problem of finding female patients. 0/8 MB patients are female and only 1/3 PBs.
Difficulty of examining them.
97
PDFs VISITED ON DAY 2, VARANASI
1st DDP/day 2 Varanasi
It is held in a rented room at a NGO homeopathic hospital. Six patients are registered for
treatment. We saw 4 of them. Proxies came to collect medicine for the other 2.
1st patient, MB. Has had 27 MDT doses rather than the usual 24. The extras are
so that he can have the required 3 skin smears taken before RET (release from
treatment).All 3 smears are negative. Clofazamine was not available on 15 occasions,
Rifampacine on 1 occasion. According to NLEP guidelines, MB patients should be
given only Dapsone if either of the other 3 drugs is unavailable. Thus in theory this
patient should be asked to attend for a further 12-15 months before RFT. The PMW
says that if his supply is short he gives it to the new cases.
The PMW tested sensation on the dorsum of the foot, using a feather to stroke the
skin.
On reminder he tested also the sole, but only the big toe and MH5. He used
pinprick and asked the patient to say "yes” when he felt the pin. The patient
sometimes did and sometimes did not say "yes”, despite which sensation was
presumed to be normal.
2nd patient, an old man having a right ulnar paralysis and sole sensory loss plus a big
toe burn. Both patients and staff are caring for the burn. The patient is unable to
demonstrate hand exercise.
3rd patient, female, MB. She received no Clofazamin on 10/19 monthly attendances
and missed Rifampacin on 1 occasion. She is recorded as having no disability but in
fact has a complete right ulnar paralysis with clawing and a little finger scar. The
paralysis has been present for 2-3 years following a tingling sensation, but was not
noticed by staff and not reported by the patient (although noticed).
4th patient, male. Has an complete ulnar-median paralysis, the median since 1993.
The PMW noticed some median wasting and Prednisolone was prescribed:
On 11.8.93. was given 45 X 5 mg.tablets and advised to take 6 tablets/30
mg.per day,in divided doses for 7 days, then 4 tablets per day for 7 days, then
2 tablets per day for 7 days, and then to stop. This regime called for 84
tablets. Staff had no more than 45 tablets at the time and the patient was
advised to buy the extra.
On 11.12 93. the patient was given another 45 tablets.
The deformity register at this DDF listed 37 patients with grades 2 or above of whom 3
were graded as 4, 5 were graded as 3 and 29 were graded as 2. 7 were recorded as having
98
died.
2nd DPP/day 2 Varanasi
It is held at a PHC. 16 patients should attend. 3 have already gone. 8 are waiting when
we arrive of whom 2 are female.
1st patient. The body chart shows nodules all over the body, including the ears,
despite which the smears are all recorded as negative = unlikely.
(See comments on microscopes/smears problems).
2nd patient. Also has very many patches but negative smears. Possibly correct but
need checking view of 1st patient.
3rd patient. An MB case who has reacted to Clofazamine.
4th patient has a right sole wound and neglected callus problem. Staff advise "soak,
rub, oil" and the patient said that he is doing this but not effectively. Rubbing of
such thick callus would open cracks. Staff need to visit the patient’s nearby house
and use a scalpel to pare skin and gradually work to improve skin and wound.
Talking is not enough.
A young lady, cured PB case, looking very worried, comes to ask if she is getting a
new patch. False alarm. However, there is discussion as to the importance of the
PMW checking with her and her parents in private, couselling her to believe in cure
and checking in case she is having marriage-prospects problems.
Day 3, Patients examined outside the district leprosy office.
Three male patients were called to show and discuss the plastic footwear given by the
Bombay leprosy programme:
Two walked little, the third was a petty trader and walked a good deal.
The petty trader had recently sustained a dorsal wound from an upper edge, and this
was uncovered and being irritated by the shoe. (Note. Staff were advised to heat and
loosen the offending edge).
All liked the footwear, preferring the enclosed type owned by one to the sandals
owned by the other two.
However the sandal uppers were definitely stronger than the shoe upper. The upper
of the shoe split vertically for the whole heel height after 9-10/12, but was
successfully and safely patched by a local shoemender. There is now a short upper
split at an edge near to the shoelaces.
99
3 different types of insole cushioning material, 1 cm thick, were being used:
The blue coloured insole in the petty trader’s sandals has shaped a good deal and is
almost worn through and with no plan for replacement. The black insole in one pair
is not worn at all, and the brown insole only slightly worn.
Other former patients examined did not have the Bombay shoes but were given a pair to
thank them for attending.
Pt.4, male, has right hand ulnar/median paralysis and has undergone reconstructive
surgery (lumbrical and thumb CMC opponens/flexor replacement + arthrodesis of
a previously flexed IP joint). His work is to weave sari material and he reckons that
the deformity has reduced his working speed by 50% although the surgery did
improve function.
Pt.5, male, was a washerman who worked in hot water and ironed clothes using a
charcoal iron. He registered for treatment in 1985 at which time he had all of his
fingers. Now his fingers and thumbs are shortened on both hands.
He has longterm, smelly wounds under right MH1 and left MH3
Pt.6, male, has a right dropped foot with shortening of his toes and 2 forefoot ulcers.
No other disability. No-one has suggested either surgery (would have to be in
another State) or a dropfoot support for his foot. His wife works.
Pt.7, female, has an ulnar paralysis and some sole sensory loss but is not worried by
either and has no wounds.
Pt.8, male, came today because he heard of interest in disability problems. He
reports developing both right sole sensory loss and bilateral ulnar weakness 3-4
months ago having stopped MP MDT 8-9 months ago. He has recently had
hepatatis, for which he was treated by the MO at the general hospital. The hepatitis
is now OK and the DEO prescribes Prednisolone from today.
Pt.9, has bilateral ulnar paralyses but is not worried by these and has no wounds.
3rd DDP/day 3 Varanasi
This DDP is held outside the ECU office, where patient forms are stored, and which itself
is beside a PHC. 6 patients are listed for treatment of whom 2 have already collected
medicine.
The other 4 are not there when we visit. Thus we look at the deformity register, see the
boy named Udaipur, and then move on. The deformity register lists 19 patients, but after
1985 only one each has been added in 1986, 1990 and 1993.
100
A 4 year-old boy named Udaipur, affected by cerebral palsy, was brought to see us. Can
walk with help, though has a wheelchair. Might be able to cope standing with a frame. Has
trouble with eating. Might be helped by WHO CBR leaflet.
3.
DRUG SUPPLY
The supply to patients of Clofazamine has been seriously interrupted on several occasions
during the past few years and the supply of Rifampacine occasionally interrupted. For
example, patients cards show that Clofazamine was unavailable for periods totalling seven
months during 1991-1993. Some MB patients have taken treatment on 15 occasions that
lacked Clofazamine, which was evidently out of stock at district level. Many patients missed
Rifampacine for one month due to a local management problem.
The DLO reports that Clofazamine is supplied by only 2 firms in India and that some delays
have been due to a court case involving a firm and the MOPH.
The supply system, is as follows. Delhi places orders for MDT drugs for all States. Stocks
are held in regional medical depots, for example in Bombay, Calcutta, Madras and
Hyderabad and the Punjab. There is a district drug purchase committee which empowers
the DLO to apply to buy drugs, usually from the Punjab regional depot. If they lack
supplies the DLO can apply to other depots to see if they have stocks, e.g. Hyderabad.
However sometimes Clofazamine is unavailable.
According to the NLEP Consultant, MB patients should in theory receive Dapsone alone
when either Rifampacin or Clofazamine are unavailable, and should then lengthen their
course of treatment so that they received 24 doses of MDT. However these guidelines were
evidently not being followed. Were they followed, some MB patients would need to
continue on treatment for more than one year longer than necessary, implying much
inconvenience.
Needed per
MDT drug stocks
as of 31.12.93.
In stock
Rifampacin 300mg
Clofazamine
Dapsone 100 mg
50 mg
11,000
Nil*
80,000
5,000
Expiry date month now
5,000
48,000
60,000
8/94
9/94
7/94
*The DLO reports receiving new stocks of Clofazamine on Sth January 1994, but even then
received only 50,000 tablets which is enough for only one month supply to patients.
A' K\J
DR'3oo
/sj GJ
is<
I
101
o'
'
■
DLO’s written comments regarding coping with drug shortage:
"If shortage is general in the district then nothing can be done. If it is local then he
manages from other units". He does have good storage facilities and would like always to
have 3/12 of stocks in hand.
In theory, fixed duration therapy is practiced in the district, though with 14 days intensive
phase for MB patients. In practice, MB patients continue for several extra months while
3 consecutive smears are taken to check that they are negative. Other patients continue for
longer because they had missed Clofazamine when taking treatment during some months.
Monolesion patients are managed through early detection and regular treatment.
4.
SMEARS/MICROSCOPES
An unlikely smear reading was observed at the 2nd DDP visited on day 2 Varanasi. A
patient whose body chart showed lesions over most of the body, and including the ear lobes,
had a negative smear result on diagnosis. A second patient had very many patches but
negative smears. This was possibly correct but needs checking view of the first patient.
Comments by the DLO in regard to smear-reading and microscopes:
100-150 slides are taken per month.
17 microscopes are available. 10 are working, but only 3 of these are functioning
reliably = 1 in the DLO office and 2 in LCDs. The other 14 are unreliable, some
having been had problems with the oil immersion lenses since purchased.
5 were from the State HQ. 9 were purchased by the previous DLO. One (or more)
sent to Lucknow for repair over 1 year ago have not yet been returned.
However any queried slides can be brought to the DLO’s office to be read.
The DLO reports some slackness in the laboratory technicians.
5.
FUNDS MANAGEMENT
For some reason, many of the SIDA funds have not reached the district. The pending
liability is 15,22,000 rp up to 31.12.93. In theory, both MOs and NMSs should visit 100%
of their unit DDPs each month. However lack of incentives funds for 3 years makes this
impossible at present. The DLO is concerned lest funds are even less when SIDA funding
stops.
102
5.1
Sources of funding
a)
The MOPH originally gave funds for an expanding leprosy service for 5 years, 198590. Now ceased.
b)
Funds from the Central Govt, coffers (not MOPH) come direct to the DLO office.
- These cover salaries of 235 staff,
- TAs and DAs (Dearness Allowance for rising prices)
- POL and maintenance for 8 vehicles,
- contingency funds (e.g. office rent, electricity, stationary)
c)
Funds from SIDA via WHO (there are no other funds coming through WHO) to the
DLO who is the secretary of the Society in whose account the funds are deposited.
The District Magistrate is the Chairman of the Society. These funds are theoretically
to cover:
- Staff incentives (admissable at the start of MDT, but due to cease in Varanasi
District from 31.12.93) as follows p.m.:
DLO 500RP
Other MO 400RP
NMS 300RP + 30RP cycle allowance,
PMW 200RP + 30RP cycle allowance (no extras for using own
motorbikes)
Statistical Asst. 250RP
Driver and physio.tech each 200RP , etc.
5.2
Funding for vehicle maintenance
The State Government gives 7-8,000 RP p.a. for POL and maintenance.
WHO/SIDA give 15,000 RP p.a. for maintenance of SID A vehicles, plus l,000RP
extra for each State vehicle.
5.3
TAs (Travel Allowances)
Staff get TAs (Travel Allowances) when they travel beyond 8 km, i.e MOs and NMSs
receive TAs and PMWs only if asked to cover for a neighbouring area. Travel costs have
gone up 10-fold but the TA levels have stayed the same.
The district currently receive 50,000RP p.a. for TAs for 235 staff which averages roughly at
200RP p.a. per staff member.
200RP would be enough:
- for 2 trips from Varanasi to the State HQ in Lucknow, or
- for 4 trips to a distant PHC within Varanasi district.
103
Thus the district currently spends about four times the 50,000 RP allotted for TAs ... the
extra being out of staff pockets. Thus there is much liability pending. Staff put in claims and
receive a proportion of what was spent in the new budget year.
The work suffers due to paucity of TA. An NMS travels to supervise 4-5 PMWs He needs
5,000RP p.a. to cover a circuit of around 35-34km. There are 26 NMSs in total in 8 LCUs.
In theory both MOs and NMSs should visit 100% of their unit DDPs each month. Lack of
incentives funds for 3 years makes this impossible at present. However, in practice they do
manage to visit at least 50%.
Some also receive city top-up and housing allowances.
As there are still 65-70 new cases per month, the DLO recommends that the incentives are
given for one more year (they stopped at end of 1993).
6.
HEALTH EDUCATION
There has been interaction with community leaders 18 times during the past 6 months.
According to the DLO, these leaders react favourably to these contacts and cooperate with
leprosy staff. The main method of health education seems to be through informal
discussion with community members who ask questions and patient contact. Some leprosy
posters were seen at the LCU office. DDPs were not inside PHC centres.
6.1
Means of assessing the impact of health education are:
- increase in voluntary reporting by 91.15% since 1985,
- decrease in the new case detection rate by 33.78% since 1985,
- significant lessening of stigma as reported by staff comparing attitudes of
community to patients between 1985 and now.
7.
STAFF AND THEIR TRAINING
Prior to the introduction of MDT three MDT orientation courses were held, two 3-day
courses during 1984 plus a 3-month operational training course from 30th January to 30th
April 1985.
104
Staff levels and training status on 31.12.93. were as follows:
District Leprosy Officer
Medical Officers
Non Medical Supervisors .
Para Medical Workers ....
Laboratory Technicians ..
Physiotherapy Technicians
Health Educators
Drivers
Administrative staff ....
Sanct
ioned
Avail
able
Trained Not
1
9
26
135
16
2
2
8
10
1
8
26
132
16
2
1
8
10
MDT
2
26
132
16
2
1
8
trained
6
Medical Officers plus NMSs plus PMWs total 166, treating 2,000 patients currently on MDT.
7.1
DLO
Dr. S N Singh has been working in leprosy, and in this district, for 2 years. He underwent
a 2-week leprosy (MDT) training course at Jalma, Agra, in Setember 1993. Dr.Singh
considers that it will be possible to eliminate leprosy from the district in the coming few
years.
Important operational and administrative problems are:
- periodic interruptions in drug supply,
- non-arrival of SIDA funds,
- that rehabilitation activities, surgery and physiotherapy are not provided, and
- that the DLO needs more power to work independently.
7.2 Leprosy Medical Officers (MOs)
There are currently 8 MOs + 1 vacancy + 1 MO away for a year for special training. Thus
currently one MO is covering the hospital and an LCU, a second is covering two areas.
Only 2 of the 8 have undertaken the basic leprosy training course. MOs who don’t want to
work in leprosy refuse training because, once trained, they will have to stay in leprosy work
for some time. There is a stigma attached to staff working in leprosy and MOs get narrow
experience. One of the current MOs (who has asked for a transfer) is a dermatologist. The
DLO said that in future MOs who refuse training opportunities are to lose their 400RP per
month incentive allowance.
One of the MOs, Dr.Singh, is looking after both his own urban area and one other LCU.
105
7.3
Leprosy staff are less busy than before, due to the declining prevalence
However the DLO says that the workers are being kept busy because:
- every MO should visit his field units for 18-20 days per month,
- every NMS should visit his field units for 25 days per month,
- every PMW should be doing some work each day except for
holidays, for example: manning DDPs on pulse days, visiting
contacts, tracing defaulters, counselling patients, carrying
out surveys in school, slum and industrial areas or undertaking
health education activities designed to interrupt the chain of
infection.
Due to lack of funds and TAs and vehicle problems in practice MOs and NMSs are not able
to keep to this schedule, though do visit for at least 50% of these periods.
1 NMS serves a population of 1-1.5 lakhs (1 lakh = 1,000,000).
1 PMW serves a population of 25-30,000.
7.4
Physiotherapy technicians
There are currently 2 physiotherapy technicians employed in the district, one trained at
Purulia and one at Chingleput. One works in a leprosy hospital and one in the field,
travelling with the MO sometimes and training individual patients. There are 2
Physiotherapy Technician posts for each of 4 units.
7.5
Comments by an NMS
He has been an NMS for 9 years. He is happy with his work on the whole except for:
- TA (transport allowance) problems, and
- periodic lack of drugs.
He should tour for 20 days per month, but during the past 3 months has only managed 8-10
visits per month due to lack of TA. His pay has risen from 650 rp salary + 300 rp incentive
per month to 2,200 rp salary + 300 rp incentive per month. However " the cost of living
has multiplied 10 times, and the cost of petrol has risen from 8 rp to 20 rp per litre.
He reckons that about 5-6% of patients default, but this data is not collected at district
level.
106
7.6
PHC staffing
There is one Primary Health Centre (PHC) for every 1 lakh population.
PHC staff consists of:
- 2 Medical Officers (MOs),
- 1 Health Educator,
- 1 Pharmacist (who prepares/distributes medicines),
- 1 Laboratory Technician
- 4-6 Senior Grades Multi-Purpose Workers (MPWs)
- 1 Health Visitor who travels round supervising the EPI and
coping with home deliveries and mother and child health (MCH)
- 10-12 MPWs, some male and some female, whose work includes
visits to villages.
Each PHC has 8 subcentres staffed by two multipurpose workers, one male and one female.
8.
SURVEYS
The weakest point of the programme is surveying, especially amongst females (Dr.Bhalla).
There are 1,777 primary schools and around 476 middle schools in the district. 1993 surveys
in 6 primary schools brought about 17 new cases to light. 1993 contact surveys, focussing
on MB cases, bring many new patients to light, for example out of 86 new cases identified
during December 1993, 36 were found through contact surveys. Voluntary reporting is
unevenly distributed and not always around 90%.
9.
VEHICLES
There are 8 State vehicles and 3 Society/SIDA vehicles of which only 5 are on the road.
Two of these need minor repairs.
The system for getting funds for repairs costing over 2,000RP is cumbersome. Requests
have to pass from the DLO to Dr.Mittal to the WHO Regional Office (in same building as
Dr.Mittal) to WHO main office (in separate building) to be sanctioned, and then back to
the DLO.
107
10
DEFORMITY DATA
10.1
WHO grade 2/3 deformity
Old cases 1,504
New cases 1,537
Total of 3,041
There is no breakdown of this data by sex or into eye,hand and foot grading.
No district data is available as to numbers with specific impairments such as lagophthalmus,
claw hands, dropfoot and plantar ulcers but some such information could be obtained from
the body charts completed at registration on individual patient cards. Hand and foot
sensation records are unreliable. For example, at the first DDP visited, only one of the 8
patients’ cards, that of the defaulter, showed a disability problem - sensory loss of both
aspects of both feet, grade 1.
10.2
Surgery
No list is kept of patients requiring surgery because surgery is not available. One patient
was seen who might have benefitted from lagophthalmus correction surgery and one who
needs dropfoot correction surgery, and meanwhile needs a dropfoot support. (Note.
W.H.O.instructions as to how to make a support have been sent to the DLO, and Purulia
hospital has been asked to send to him a sample that could be copied).
10.3
Deformity registers
These were available in Varanasi District, one for each PMW’s area. Thus there are 4
registers per each PHC area. However all registers examined were out of date, most
containing few or no entries after 1985. One, written in English, listed an exceptionally high
number of 78 patients, being for an industrial area to which many people have migrated.
Most of those listed had registered for treatment by 1985, with the latest 2 registered in the
English-language register in 1989. As the register covered a number of years and was out
of date, it was not possible express the disabled as a percentage of patients examined. A
second register written in 1985 for a similar size of area listed only 17 disabled patients.
Breakdown of disability data in the 62 patients who were not recorded as having died or left
the area showed the following:
EYES - 1 patient had lagophthalmos.
HAND - disability had been recorded as affecting 53 patients:
- 11 with 1 finger clawing,
- 14 with 2 finger clawing,
- 3 (aged 20, 40 and 50) with 3 finger clawing,
108
- 2 (aged 32 and 50 years) with 4 finger clawing,
- 1 (aged 30 years)
with 5 finger clawing.
- 12 have unspecified "hand deformity”, 3 bilaterally
- 1 hand is recorded as operated on in Madras
- 4 are recorded as having only "loss of muscle".
FOOT - disability had been recorded as affecting only 13 cases:
- 2 with footdrop (1 case bilaterally)
- 4 with foot ulcers recorded
- 3 with feet deformed (2 bilaterally), and 3 with toes deformed
- a total of 12 have evidence (including the above)of foot sensory loss.
SENSORY LOSS ONLY
- 16 are recorded as having loss of sensation only, not always being specified
whether this affects hands and/or feet.
AGES - 18 (2 cases), 20-29 (9), 30-39 (16), 40-49 (17), 50-59 (14), 60-69 (4), 70+ (4)
10.4
Comments on the disability data
27 of the disabled patients listed were under 40 years of age at diagnosis around
1985, a further 17 aged 40-49. Most of these will still be working and it is important
that they be reviewed to check if and how their disability and dehabilitation have
increased and what help, if any, they now need.
It is important to find out how much of the hand deformity inconveniences patients
in some way ... and if so, how it affects them. More than 50% of the 53 people with
hand deformity have only 1 or 2 finger clawing or loss of muscle, which may not
trouble them.
Foot sensation is poorly tested as evidenced not only by observation during DDP
visits but also by the low %s registered with sole sensory loss as compared with hand
problems. Staff and the NLEP Consultant comment that the hand is easier to check
than the foot, especially at DDPs where patients are usually standing. However if
foot ulcers and deformity develop over the years in an insensitive sole, they can cause
great inconvenience.
The male female ratio was given as 51:14, which seems unlikely.
7 of those graded as 1 are recorded as having hand deformity and 2 as having loss
of muscle. The former, and probably the latter, should have been graded as 2.
109
11.
DISABILITY CONTROL ACTIVITIES
11.1
SNF
Pt.8, male, came today because he heard of interest in disability problems. He reports
developing both right sole sensory loss and bilateral ulnar weakness 3-4 months ago, having
stopped MP MDT 8-9 months ago. He has recently had hepatitis, for which he was treated
by the MO at the general hospital. The hepatitis is now OK and the DLO prescribes
Prednisolone from today.
11.2
Self-care training
DLO: Some health education is given to all patients to prevent deformity, and to those
having deformity to teach the patient how to care so that it may not worsen.
Pt.5, male, was a washerman who worked in hot water and ironed clothes using a charcoal
iron. He registered for treatment in 1985 at which time he had all of his fingers. Now his
fingers and thumbs are shortened on both hands. He has long term, smelly wounds under
right MH1 and left MH3
11.3
Provision of protective devices
400 pairs of plastic, MCR footwear incorporating steel, sole shanks were gifted to the
district one year ago from Dr.Antia and colleagues in the Bombay Leprosy
Programme. 386 pairs have been distributed, to 257 MB cases plus 129 PB cases.
However the district has no funds to replace them.
Pts 5 and 6 need protective footwear.
Pt.6, male, has a right dropped foot with shortening of his toes and 2 forefoot ulcers.
No other disability. In the absence of surgery, he needs a dropfoot support.
11.4
Ulcer care
Pts 5 and 6 need wound attention
11.5
Identifying presence/absence of dehabilitating influences and taking action to
minimize dehabilitation where identifed
Could the working speed of Pt.4 be improved by aids?
Pt.7, female, has an ulnar paralysis and some sole sensory loss but is not worried by
either and has no wounds.
110
Pt.9, has bilateral ulnar paralyses but is not worried by these and has no wounds.
11.6
Reconstructive surgery
Pt.4, male, has right hand ulnar/median paralysis and has undergone reconstructive
surgery (lumbrical and thumb CMC opponens/flexor replacement + arthrodesis of
a previously flexed IP joint). His work is to weave sari material and he reckons that
the deformity has reduced his working speed by 50% although the surgery did
improve function.
11.7
Monitoring effects of action to control disability and dehabilitation
No monitoring is taking place, nor do records include any relevant measurement indicators.
Ill
DAY-LONG VISIT TO BANKURA DISTRICT
1.
JANUARY 7TH/DAY 4 ■ TRAVEL TO BANKURA DISTRICT
Population density is 370 people per sq.km.in WB.
The Bankura DLO Dr.Biswas has spent 3 years in leprosy work. Before that he took a
public health diploma course and spent 10 years as a district family welfare officer.
Visit Gouripur Regional Training and Research Institute (RTRI) of the Central
Government and State Government Leprosy Hospital which are in the same compound.
In addition, see some of the 50 hospital beds that are used for patients as a demonstration
facility. An epidemiology department was established here one month ago.
Meet the Director Dr L S Chauhan and the Assistant CMO for Bankura District, Dr.A C
Mandar, who was surgeon at thie hospital for 10 years.
Discuss available Training Centres
a)
The Regional Training and Research Institute at Gouripur, run by the Central
Government offers training courses for laboratory technicians, PMWs and NMS.
They are now, for the first time, offering an MO course. There were no applicants
for the first suggested course, but some are expected for a course scheduled to
commence in April 1994.
b)
The State Government runs training courses at Bankura.
c)
TLM Bankura Leprosy Home and Hospital has field unit and in-patient beds and
conducts courses for laboratory staff.
d)
The TLM Hospital in Purulia runs courses for leprosy physiotherapy technicians.
e)
3 year courses for physiotherapists are conducted in Medical Colleges and Post
Graduate Institutes. However these are not presently taking new candidates because
those qualified are not yet absorbed, some being without jobs. Physiotherapists are
employed mainly in district and state hospitals.
The RTRI serves the Eastern States of Bihar and West Bengal plus the 4 North Eastern States.
Courses held during 1993 were as follows:
- 6 NMW courses, each for 10 trainees,
- 18 PMW courses, each for 10 trainees.
112
In future most States will conduct their own PMW courses. However the RTRI will also
conduct PMW courses where there is demand. For example in 1995 they will train PMWs
for Kashmir. A new MOs course is on offer. There were no applicants for the first course,
but some are expected for the next scheduled course due April 1994.
A one-day course for private practitioners in the area may be considered. Some patients
take private treatment. Although some of the private doctors have leprosy knowledge (e.g.
2 dermatologists in Bankura), others don’t. 25 patients sent to the RTRI for skin smears
from knowledgable doctors were all on MDT, though not necessarily the WHOrecommended course.
1.1
Discussion with RTLI doctors regarding disability control activities
a)
Recommendation regarding Prednisolone treatment:
Doctors in the RTLI office said that they usually do not give Prednisolone for type
1 reaction. They may give it for type 2 reaction, particularly for nerve pain.
A course of treatment is usually 45 days to 3 months. Dr.K C Das said that he has
the impression that more patients suffer type 1 reaction on MDT than on
monotherapy, though he has no data to support this observation.
b)
A physiotherapy record is made by the physiotherapy technician for patients with
grade 2 or 3 disability, but not for grade 1. The current physiotherapy technician was
trained at the TLM Hospital in Purulia, but was on leave on the day of the visit.
c)
The MOs and nurses give some education regarding wound avoidance and care.
1.2
Visit Gouripur State Govt.Leprosy Hospital which is on the same compound
This is the main Government facility for in-patient treatment for the whole state, having 500
beds and daily out-patient services. Referrals are accepted from the whole State. Some
come on their own. It is an old hospital from pre-Independence time. Dr.C K Das was at
one time Superintendent here.
a)
Visit some patients in the mostly empty wards.
b)
Visit the physiotherapy department. The physiotherapist, who trained in Calcutta,
has worked at this hospital for 3 1/2 years and says that he has not made a single
physiotherapy record during this time, nor presumably have the MOs insisted that he
do so. His work is seen as giving wax treatments, teaching exercise, making plaster
casts and supervising the shoe-making workshop. Patients seen exercising did not
need the exercises that they were being taught.
113
The physiotherapist has had no leprosy training and said that leprosy was not taught
during his physiotherapy course in Calcutta. When Dr.K C Das asked if he wanted
arrangements to be made for him to visit a physiotherapist at a leprosy hospital he
replied ’Til think about it”!
c)
Visit the Shoe-making unit. Two shoemakers made between them only 30 pairs of
protective sandals during 1993. Six patients await footwear now. Problems include:
lack of funds for materials. If patients pay, they take foot drawings, buy materials and
make the footwear. Charges to patients are: full rate 65 rp, half rate 32 rp, or free.
Comment: The X-style being made has extra wide straps and is very wasteful of
leather. Suggest they try the Y-type, obtaining patterns from TLM Purulia, via
Dr.Biswas or the SLO.
1.3
New cases in Bankura
In 1988: 5886, 1989: 3612, 1990: 3405, 1991: 4291, 1992: 3922 and in 1993 up to end of
November: 4121 (expecting by year end: approximately 4500).
In 1993 24.36% of new cases were MB as compared with 32.36% in 1988 indicating that
cases are being detected earlier.
1.4
New case finding indicators
Bankura child cases 1993:
MB 103/1004 (10%), PB 972/3117 (31%)
= Total 26%
Deformity in NP MB 46/1004 (4.58%), PB 29/3117 (0.93%)
= Total 1.82%
Voluntary reporting percentage in Bankura had gone up since an extensive health education
campaign was commenced in 1992. From 37% in both 1990 and 1991 to 42% in 1992 and
52.35% up to November in 1993.
1.5
Surveys
Starting 1993 staff have been organizing a stratified random survey. Findings will give a
better idea of the patient load in the community. As the team moves in field, public
awareness of leprosy increases.
114
1.6
Proxies
Dr. Biswas said that 2 consecutive proxies for collecting medicine on behalf of a patient are
not usually allowed. However one can record "ulcer/schoolgirls ... advised proxy" in special
cases. Now is harvest season and many who have been away for labouring jobs will return
January 14. Staff can give advance doses for this type of situation, recording this in the
patient’s notes.
1.7
Shortage of funds for Prednisolone
Bankura estimated Prednisolone needs as 2,000rp per ECU per month since 5% of all cases
need Prednisolone. Thus 100,000 to 120,000 tablets of Prednisolone are needed, costing
48,000 rp., yet the total allowance for all non-MDT drugs is only 12,000 rp. Access to
Prednisolone is a
particular problem since the pharmaceutical companies are unwilling to supply the
Government at their fixed rate because the market rate is now higher. Because of this
shortage, staff give "minimal doses", e.g. 10 mg. p.d. in the field. If patients need bigger
doses, they are referred to hospitals which have a separate budget and can supply. Bankura
uses the same fund to buy Vaseline (sometimes), bandages and other drugs.
Bankura has run its MDT programme for only 6 years. Therefore they get a special
allowance for extra drugs. However, Purulia has not received the extra allowance since April
1991 because they have completed the 9 years during which extra allowances are permitted.
1.8
Health Education
Bankura TLM have a Health Education unit which moves to the field
according to a schedule. When NLEP ask for their help, TLM provides it.
The leprosy team have met all panchayats and Integrated Child Development
Schemes (Women’s groups care for children up to age 6 and for females aged
14-44, or of child-bearing age for immunizing, nutrition etc. during 3-month
training courses). They teach early signs of leprosy and list treatment dates
for all panchayats, women’s groups, health workers, MOs and some medicine
shops. The groups then refer cases. At PHCs, a notice has been painted on
the wall to give information on leprosy together with the advice "don’t fear"
and "it may not be leprosy".
A written appeal was sent to all head teachers describing salient features of
leprosy and to use slides. When films are required, they ask TLM who are
very helpful.
115
1.9
Special Drives during the year
Stratified random survey No. 931/0 to estimate the present load in the district
and give indirect propodanda to the NLEP.
Meetings with all the 19 Panchayat members:
19 at samity level and 171 at anchal level.
Painting notices on the health point walls x 116 at the BPHC/PHC/SHC/SC
level indicating salient features on leprosy and "pulse calendar" (clinic
timetable)
Distribution of pulse calendar to all concerned.
Distribution of MDT Q & A to all PH Centres and local practitioners.
Meeting with all Health Staff of the 22 Blocks in the District and ICDS staff
with slide projector.
Meeting with PHC Indoor Nursing Staff and Teachers of the GNN Training
School of BSMC&H, Bankura.
Since Sept. 1993 they have been meeting at village level with the Panchayat Members, Clubs,
Voluntary Organisations, teachers etc. asking help and active participation during the
proposed stratified random survey which started in November ’93. All reports are expected
to be completed in March ’94. By means of all these activities voluntary case detection has
been increasing gradually and is at present nearly 60%.
1.10
Protective footwear
Staff supply one-size-bigger canvas shoes costing about 70 rp. per pair, and put an extra hard
insole inside to compensate for a very thin sole. Cracks are a big problem in winter.
1.11
Overview from the Bankura annual report
India estimated case load at 2.2 to 2.5 million. Spread all over India but varies from State
to State, district to district and within the district itself. The areas of high prevalence are
found mainly in the SE and central parts of the country including Tamil Nadu, AP, Orissa,
Bihar, Uttar Pradesh, Maharasthra and WB. Between them these 8 states account for
approximately 90% of the registered cases in the country. About 15-20% are children below
the age of 14 and an equal number suffer from deformities.
116
a)
Pre 1955 the NLCP (National Leprosy Control Program) LC activities were mainly
organized by the charitable missions and NGOs in a clinic approach and IP rx. with
Dapsone.
- 152 institutions with 19,600 bed-strength:
142.6 beds/1,000 estimated cases.
- 1203 Clinics: 1 clinic/300,000 population.
b)
In 1955 NLCP was launched, the last year of the 1st 5-year plan with the main
objective of controlling leprosy through domiciliary rx. with Suplhone. Started as a
centrally-aided scheme but ultimately converted into a centrally-sponsored program
in 1969-70 with total expenditure on it being charged to the central government.
c)
In 1980 the NLEP the programme was accorded a high priority and re-designated as
NLEP (Eradication rather than Control). Approach was based on:
- MDT
- Education of patients, their families and community re the disease and its curability
- Physical, social and economic rehabilitation of cured patients.
Stratification of WB districts according to prevalence rate:
- Less than 2/1,000
- 2 - 4.9/1,000
- 5 or more/1,000
TOTAL
177 districts
77 ”
201 ”
455 districts
In WB all the districts are in the category of high (5 +) endemic area except for Calcutta
and Darjeeling districts where PR is 2-4.9/1,000.
MDT Districts in WB
MDT started in the year
1982
Purulia
Bankura
1988
Bardhaman, Birbhum & Mednipur
1991
24-Paraganas (N), 24-Paraganas (S), Hoogly, ) All set for the
Nadia, Murshidabad, Maida and Jalpaiguri ) start of MDT
Dinajpur (N), Dinajpur (S), Cooch Behar, ) Ready for MDT
Calcutta and Darjeeling
) at the clinic
Staff directly involved: 8 MOs including DLO, 16 NMSs, 110 PMWs, 9 lab technicians,
1 Health Educator, 1 PT, 9 drivers, 11 clerks, 8 peons, 1 nightguard.
1.17
1.12
Indirectly helping the programme at district level
a)
b)
d)
e)
The Chairman of the Society (District Magistrate) and his office
Panchayat members at all levels
All the staff a) RLTI at Gouripur, b) Gouripur Leprosy Hospital, and c) TLM
hospital
Family members of the patients
Different clubs, organistions etc.
1.13
Helping at State level
c)
- SLO
- Dy.Director of Health Services and his office
- Consultant, Dr.A K Halder
Their basic need for smooth running of MPT programme
a)
b)
c)
d)
118
Regular flow of MDT funds and State funds
Regular flow of MDT drugs
Placement of 2 new diesel vehicles against the condemned vehicles
Over and above active cooperation from all corners.
GENERAL SUMMARY
1.
POSITIVE EFFECTS OF SIDA FUNDING
- Encouraged/enabled 1982 MDT trials in Wardha and Purulia, which were pilot projects
setting a plan later copied in other districts.
- When SIDA funds to aid MDT implementation reach the district, they are much
appreciated. The funds make more travel possible through provision of more vehicles and
extra incentives/travel allowance, thus enabling there to be surveys, more drug
distribution points and better supervision of the work. Flexibility of funds has enabled
needs to be met immediately whilst due funds from Government sources take time to
arrive. However many of the due SIDA funds have failed to reach Varanasi for the past
3 years. This problem has possibly been due to errors in the ways funds were applied for,
but this should have been identified at an earlier stage, because their lack of funds has
led to a cutback in the number of supervision visits and funds for travel allowances, POL
(Petrol, oil, lubricant) and vehicle maintenance were also insufficient. Funds for travel
allowances for the first three months of 1992 in Purulia, just before cessation of SIDA
funding, have not arrived it seems.
2.
GOOD NEWS:
- Reduction in annual case detection rate
- Reduction in child percent rate
- Reduction in deformity percent rate in new cases (but the reliability of deformity data is
questionable)
- Lessening of stigma is shown by increased visible acceptance of patients in the community
and by increased readiness of patients to be examined in public.
- Staff now have lots of time available to pay more attention to women’s privacy, POD etc.
- Some motivated and experienced staff.
3 PROBLEMS:
3.1
Unsure how many early cases are unidentified
a)
The new case detection rate is higher than anticipated by the NLEP at this stage in
Varanasi and is levelling out in Purulia. Why so high at this stage? How much
overdiagnosis is taking place?
119
b)
Are women being identified early? The lack of privacy at DDPs would tend to
discourage women from coming forward. There is a need for maximum practical
privacy, e.g. by holding up a cloth for privacy at open-air DDPs, and by using PHC
rooms where available.
(The reduction, however, in new case detection between 1985 and 1993 from 12,000 to 2,000
is very commendable).
3.2
Defaulters are not separated from died/moved at district and state level
a)
One cannot tell what percentage of those who don’t die/move have completed their
MDT course. It seems important to find this out. A circular has been issued, in
November, 1993, to say that RET cases, defaulters, deceased and migrated should be
separated.
3.3
DLO staff concerns:
a)
Overdue TAs and other SIDA/WHO funds at Varanasi.
b)
Irregularity in supply of Clofazamine and Prednisolone (Dr.Bhalla immediately
"solved" this problem by saying that Society funds can be used to purchase
Prednisolone). The DLO has to send names of drugs to a purchase committee which
meet only once or twice a month and sometimes not at all for 2-3 months resulting
in approval delays.
c)
Vacancies/lack of training at MO level in particular resulting in failure of MOs to
identify illogical classifications, smear results, Prednisolone courses etc.
d)
Microscope problems unsolved,
problem.
e)
Vehicle repairs not carrried out, mainly due to lack of funds.
3.4
Other problems
50%/50% microscope/laboratory technician
Prevention of disability (POD) activities are lacking, with only superficial advice on self-care
being gven to patients. Patients are encountering care problems that are not being solved.
Lack of privacy, particularly for women.
Communication skills are poor, with too much one-way advice, too little listening and little
or no problem-solving re POD.
120
Varanasi Specialist and DLO: "During the first 3 years on MDT, staff were enthusiastic and
action good. However now supervision and enthusiasm are declining, partly because patients
had unreal expectations, e.g. that MDT would heal wounds and reverse hand clawing.
121
SOME RECOMMENDATIONS
To Enhance Bacillus Control
1.
a)
Pay overdue WHO/SIDA funds as a matter of urgency.
b)
Improve consistency of supply of Clofazamine and Prednisolone. ( Note. NSL have
evidently just supplied large quantities of MDT drugs to India.
c)
Mend vehicles/microscopes.
d)
Make supervision and encouragement of field staff and patients by MOs more
systematic. Due to the fast turnover of MOs, some lack leprosy training and experience.
Compile for them a list of hints regarding supervision. For example, suggest that MOs
ask PMWs to bring registers and patient cards to some of the monthly unit meetings,
and to:
- recheck smears of any patients whose body charts show ear nodules yet whose smears
are recorded as negative,
- recheck classification of any patient classified as MB yet whose body chart shows fewer
than 5 patches,
- see that the registers are orderly and ask what action staff have taken to encourage MB
defaulters to attend,
- give priority to field visits to PMWs whose cards and registers suggest possible
problems.
e)
Stratified surveys are due to commence February 1994 in Purulia. Make sure that
these take place. It would facilitate disability control planning were it feasible for
disabilities, and social and functional problems arising from them and from the
diagnosis, to be recorded at the same time.
f)
Record male/female data at district and national levels so that it will be possible, for
example, to ascertain whether females are diagnosed late or attend less regularly.
2.
To Enhance Disability Control
a)
Improve the method of recording of disabilities, incorporating measurable indicators
through which the effect of action to control disabilities can be monitored in future.
See recommendations in ILEP Prevention of Disability Guidelines. Add comments
regarding any social and functional problem that the patient is encountering.
b)
Make district disability profiles using this form and comments during surveys of present
and former patients.
122
c)
When next carrying out a stratified sample population survey for MDT purposes, list
people suffering from disabilities cause both by leprosy and by other causes. Record
non-leprosy disabilties on the very simple form given in the WHO Community Based
Rehabilitation guidelines.
d)
Repeat the disability record annually, at least in sample groups, and observe trends.
For example:
- How many patients are losing nerve function prior to or on treatment?
- Observe trends in wound, open crack and bone loss prevalence as described in ILEP
POD guidelines.
- Note which disabilities trigger social or functional problems for patients.
- Use this information to identify action priorities.
e)
Update training (initially through use of monthly staff meetings) regarding action to
control disability and dehabilitation through simple field tasks:
- Clarify "neuritis" identification and treatment regimes (minimum dosages
recommended), including silent neuritis.
- Place emphasis on results and on solving problems, not just on the giving of "advice".
- Experiment with possibilities for protective footwear,including use of local shoemakers.
Monitor footwear usage and durability, and wound incidence, of the 400 Varanasi
patients using the Bombay (Dr.Antia) footwear distributed 1 year ago.
123
SUMMARY OF MAIN COMMENTS FOR SIDA ON VISITS MADE TO PURULIA
AND VARANASI DISTRICTS DURING JANUARY 1994 TO EVALUATE
THE MDT PROGRAMME AND DISABILITY CONTROL ACTIVITIES
1.
2.
3.
4.
5.
6.
7.
The impact of SIDA input to the programme.
The epidemiological and public health impact of the MDT programme.
The handling of drugs and their side effects.
The utilisation of funds and cost efficiency of the
programme.
The social effects of the NLEP with respect to attitudes among the public and with
respect to community participation in the programme.
WHO disability index and other disability and dehabilitation data.
Lessons to be learnt from the NLEP for the future operation of the programme, in
regard to action to prevent disability and social problems.
1
THE IMPACT OF SIDA INPUT
SIDA input in Purulia dated from 1982-1991 and in Varanasi from 1985 to the end of
December 1993. Several of the experts accompanying the visits had led the leprosy control
programme at the time of the SIDA-backed MDT initiative.
l.l
All who had participated in the programmes at the time of the SIDA input greatly
appreciated SIDA’s role in providing both the stimulus and the funding for the
initiation of the MDT programme in the districts whose activities they supported,
thereby setting an example that could be followed by the Government in other
districts.
1.2
The leprosy experience of the Purulia Consultants in particular was seen to be
helpful to the DLO. Much has been accomplished in regard to pre-MDT discharge
of cured cases and implementation of MDT with resultant significant reduction of the
caseload. It was surprising that neither WHO, acting for SIDA, nor the consultants
identified and solved problems of non-transfer to the district of some of the SIDA
funds (see 4.1).
1.3
Dr. Mittal said that it was not planned that the standard of work should be better in
SIDA-supported districts than in other districts. The Government or other agencies
planned to provide similar funding in other high-prevalence districts during MDT
implementation. The Bankura district programme which did not have SIDA support
seemed in practice to be functioning more efficiently than the neighbouring Purulia
district programme. This appeared to be due to a large extent to a combination of
management experience on the part of the DLO and an almost-complete
124
complement in Bankura of MOs trained in leprosy, whereas Purulia faced a shortage
of MOs and those in situ were for the most-part untrained in leprosy.
1.4
It was disappointing, especially in view of SIDA’s expectation that action would take
place to prevent disability as well as to cure leprosy, to find that SIDA had not
ascertained that disability prevention activities and evaluation be an essential
component of the programme. Both the consultants and the DLOs lacked training
and experience in the basics of action to control disability, which could have been
implemented gradually as the caseload fell (see 3).
2 THE EPIDEMIOLOGICAL AND THE PUBLIC HEALTH
IMPACT OF THE MDT PROGRAMME
In both districts visited, the numbers of new cases being identified far exceeded the numbers
estimated by NLEP. For example there were 2,567 new cases in Purulia district from
January to November 1993, exceeding the new patient target set of 700 new cases. It is
important that realistic estimates of case loads are identified through the use of appropriate
stratified sample surveys, and that results are presented by gender in order to ascertain
whether female patients are being identified as early, and taking treatment as regularly, as
male patients. No sample survey followed completion of the period of SIDA support in
Purulia, but one is planned for 1994.
Some inaccuracies were observed in the WHO disability grading in new cases used as a new
case finding indicator (see 6).
3
THE HANDLING OF DRUGS AND THEIR SIDE-EFFECTS
Periodic shortages of Clofazamine have presented a serious problem. Some MB patients
have been given only Dapsone plus Rifampicin on 15 monthly attendances. According to
Dr. Balia, the period of treatment should be extended when one of the MDT drugs is
missing and Dapsone only should be given to MB patients in the absence of either
Clofazamine or Rifampicin, but this is not happening in practice. Dr.Mittal has just received
new stocks from ILEP.
Rifampicin was unavailable for a three-month period in Purulia.
One patient seen had a skin allergic reaction to Clofazamine.
125
4 THE UTILISATION OF FUNDS AND COST EFFICIENCY OF THE PROGRAMME
4.1
The non-transfer to the districts of some of the SIDA funds posed problems in regard
to the cost of vehicle maintenance, repair and fuel and travel allowances. In Purulia
there is a comparatively small shortfall of funds to cover incentives due during the
first three months of 1992. In Varanasi there is a significant shortfall of 1.5 lakh rp.,
possibly due to mistakes in the accounting returns from Varanasi to Delhi which
account for funds received but do not make clear what funds are overdue. As a
result travels of MOs and NMSs were, one NMS says, cut by 50%, due mainly to
non-availability of travel allowances.
4.2
According to the DLO, funding problems were being experienced by Purulia after
the withdrawal of the SIDA support there, with shortages of funds for:
- vehicle POL (petrol,oil,lubricant) and maintenance,
- non-MDT-drugs, such as Prednisolone,
- travel allowances,
- office rent, etc.
4.3
The fall in caseload was rapid as a result of pre-MDT discharges and the shortening
of the treatment period. Thus PMWs and NMSs in particular had much spare time
which could have been put to better use. One PMW only had responsibility for 2
DDP days per month. In Purulia district, 91 PMWs were responsible for treatment
between them for treatment of only 3,832 patients on treatment 1992-93, i.e., on
average only 42 patients per PMW, 274 per NMS and 1,277 per MO. In Varanasi,
where currently 2,027 patients were on treatment in November 1993, an NMS is
responsible for only 100 patients on treatment, and a PMW for around 20-25.
Workload of laboratory technicians is likewise meagre so that the lack of motivation
mentioned by one DLO is unsurprising. This use of staff skills is not cost-effective.
4.4
Supervision is suffering in Purulia due to a fast turnover of MOs untrained in leprosy
and in Varanasi due to the fact that 6 of the 8 MOs have not undertaken a leprosy
training course. Some try to avoid leprosy training because they fear that they will
then have to undertake leprosy work for a longer period. Many MOs dislike leprosy
work because it gives narrow experience in a stigmatised field. Another factor
hindering supervision in Varanasi is the non-arrival of funding for travel allowances
(see 4.1).
4.5
There needs to be greater sensitivity to opportunities to increase privacy for ladies
in particular, perhaps by making use of PHC rooms where available or holding up
a cloth as a screen.
126
5 THE SOCIAL EFFECTS OF THE NLEP WITH RESPECT TO
ATTITUDES AMONG THE PUBLIC AND COMMUNITY
PARTICIPATION IN THE PROGRAMME
Signs that community attitudes have changed since 1985 in Varanasi district are:
increase in voluntary reporting by 91.15%,
decrease in new patient detection rate 33.78%, and
significant lessening of stigma, at least amongst males, as reported by staff
comparing community attitudes to patients between 1985 and now.
In Purulia district, percentages reporting voluntarily have fluctuated between 36% and 54%
since 1987.
Health education activities in Government-run leprosy control units in Purulia and Varanasi
seem low-key as compared with those in Government LCUs in Bankura district and with
the Purulia district unit supervised by the Gandhi Memorial Leprosy Foundation. The latter
unit centres their programme on health education, using a variety of visual aids, and have
data to show that intensive community health education has proved a more cost-effective
way of identifying new cases than surveys. The Bankura programme has a busy programme
of health education and makes a point of systematically involving the following in leprosy
activities:
the Chairman of the Society (District Magistrate) and his office,
Panchayat members at all levels,
all the staff of the regional leprosy training institute and State hospital at
Gouiripur and Leprosy Mission staff, including their Bankura Health
Education team,
family members of the patients,
different clubs, women’s organisations, etc.
6 WHO DISABILITY INDEX AND OTHER DISABILITY/DEHABILITATION DATA
6.1
For available information regarding WHO disability grading in new cases recorded
since the start of the MDT programme see charts prepared by Dr. Revankar. Apart
from this information there is no collated disability data in the two districts visited.
WHO deformity grading is ascertained from the body charts but several mistakes
were observed during visits. For example, 4/11 MB patients at one DDP were
recorded as having Grade 0 deformity, but two of the four did have disability - one
each, Grade 1 and 2. Eight percent of the 73 patients on treatment at two DDPs,
whose cards were examined in detail (see 6.3) had disability Grade 2, which
contrasted with the 1.74% new cases reported as having deformity. A check needs
to be made lest disability recording inaccuracies distort WHO disability data.
127
The disability grade had worsened during treatment in several patients examined, and
had worsened after cure in others seen having peripheral nerve dysfunction. One
patient having bilateral finger clawing had had all of his fingers at the start of MDT
but all are shortened now.
The load of people having peripheral nerve dysfunction, and thus at lifelong risk of
new disability, cannot be ascertained from numbers having Grade 2 at diagnosis (see
6.3 and 6.4).
6.2
Some more information as to the nature of the deformity could be collected from
individual patient forms, for example, recording the presence or absence of
lagophthalmus, clawing and/or dropfoot.
Sensation records of hands and feet, as checked during field visits, were not reliable.
For example, in one patient staff had recorded complete loss of dorsal sensation on
a hand, with no loss of palmar sensation, whereas in fact, the patient had an ulnar
nerve lesion with complete sensory loss down the ulnar border of the hand and little
finger (both aspects) and three finger clawing. A second patient had a dropfoot
which was recorded plus an insensitive sole which was not recorded.
6.3
The nature of deformities recorded on individual patient cards of people on
treatment was checked at 2 DDPs.
Of the 36 patient cards checked at the 2nd Purulia DDP visited, 12 cards (33%)
showed disabilities, Graded 2 in three of the patients (8%);
1 showed unilateral lagophthalmos,
3 showed complete loss of hand sensation (2 bilaterally, 1 also showing loss
of all fingers and both thumbs),
7 showed foot sensory loss (2 bilateral, 2 dorsal sensory loss only, 1 also had
unilateral loss of toes).
Of 37 who attended for treatment at the 4th DDP during the day of the visit (not all
present at the time of the visit), 7 who were examined (19%) were found to have
disability. 6 of them (16%) now have WHO Grade 2 disability though only 3 (8%)
were graded as 2 on diagnosis:
Most were young and at serious risk of worsening disability,
Two had acquired their nerve lesions whilst on treatment,
The disability grade had worsened since diagnosis in at least 3 patients, 2 due
to new nerve lesions and 1 due to a wound in an insensitive foot. Worsening
in some other patients would not result in a change in grade,
2 required and wanted surgery, 1 for footdrop and the other for ulnar, 4finger clawing. A third patient would have been helped by modified dropfoot
128
correction.
6.4
The fact that greater percentages (19% and 33%) have peripheral nerve dysfunction
(Grade 1 or above) illustrates the fact that the Grade 2 data does not give a realistic
idea of numbers of patients with disability and at risk of lifelong increase in
impairment.
6.5
Most DDPs in Varanasi had deformity registers. However these were not up to date,
most having few or no entries since 1985. None were shown during the Purulia visit.
6.6
At present no outcome data is available, basically because the disability recording
system is inappropriate for the monitoring of change. Deformities are roughly shown
on the initial body chart, but:
there is insufficient sensation and strength detail and accuracy to show
changes in nerve function, and
no records are made of changes in vision, wound, cracks and bone loss status.
No measurable objectives related to disability have been set, e.g., reduce the
prevalence of wounds in insensitive hands/feet.
LESSONS TO BE LEARNED FROM THE NLEP FOR
THE FUTURE OPERATION OF THE PROGRAMME
7.1
It is important that efforts are made to identify and overcome factors discouraging
MO involvement in leprosy work. New initiatives and specific targets in the area of
disability control might prove motivating to staff bored with routine activity, e.g.,
"make a disability survey/study of social needs", "act to reduce the wound
prevalence".
7.2
It would also seem helpful to give inexperienced MOs training in management skills
plus practical advice as to how best to check on progress when unable to visit all
DDPs. For example it would be useful to ask PMWs to bring registers and patient
cards to monthly meetings and then checking these for regularity of attendance and
smear-taking and to see if the relationship between body charts and classification are
logical.
7.3
It is important that the stratified, sample survey planned for Purulia from February
1994 takes place and that similar surveys are conducted as appropriate in Varanasi
so that true estimates of patient loads are obtained periodically. Were staff to be
trained in the completion of the disability record form recommended in the ILEP
Prevention of Disability Guidelines, then disability information could be collected at
the same time.
129
It is recommended that district data, particularly that relating to new case finding and
disability indicators, is collated separately for males and females so that any bias can
be detected, investigated and overcome if possible.
In addition it would be helpful to separate numbers of patients being discharged
without completing treatment from those who have died or moved ... at present these
are summarised together under a heading: "otherwise".
7.4
It is recommended that staff pay more attention to:
Listening to patients, making sure that communication is really two-way rather
than focusing on the "giving of advice". For example:
What problems is a patient who defaults or has calloused, cracking skin
encountering? (26% of Purulia patients attend irregularly).
Is it or is it not feasible for the patient’s wife to help more on the farm to
allow the patient to give a wound sufficient rest to promote healing? A little
help now might avoid the necessity of more help later if the wound becomes
complicated. Discuss options.
Trying to allow females patients more privacy, as far as is feasible. For
example, more use might be made of empty rooms where a DDP is at a PHC
centre, or of a cloth or human shield (other ladies) where the DDP is in a
public place.
7.5
Action to control disability seems at present to be basically confined to general
advice to patients regarding skin care and wound avoidance. It is not proving
effective in most of the disabled patients seen during the visit. Much more could be
done by available staff and in the DDP situation and at patients homes.
Because so much that is simple has yet to be carried out effectively at DDPs, it is
recommended that priority be given to action to study disability trends, solve care
implementation problems and obtain protective footwear.
More complicated
rehabilitation measures could either be carried out now by hospital staff, or be
delayed until the simple measures have not only been implemented but also are
proving effective. Recommended reading: ILEP Prevention of Disability Guidelines
for Managers of Leprosy Programmes.
7.5.1
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There is urgent need for district profiles to be undertaken to clarify both the nature
and extent of the impairment problem, in present and former patients, and the social
and functional effects that these impairments are engendering in patients lives. A
logical plan of action could be based on findings. The stratified, sample survey shortly
to commence in Purulia would provide good opportunity for the gathering of such
information were staff trained in completion of the disability survey form.
7.5.2
If the effects of activities on impairments and on patients’ lives are to be monitored,
so that problems can be readily identified and overcome, an appropriate but simple
disability recording system needs to be introduced. That shown in the ILEP
Prevention of Disability Guidelines is recommended, with an added question to
ascertain how a) the leprosy diagnosis and b) impairments as they develop, are
affecting the patient’s life. Dr. Noordeen confirms that WHO disability grading is
neither intended nor appropriate for this purpose.
7.5.3
If deteriorating nerve function is to be preserved, as far as is feasible, it is important
that the methods of sensation testing and recording are improved, that criteria for
prescription of prednisolone during silent neuritis are clarified and that all leprosy
MOs have constant access to prednisolone. During the visits:
many inaccuracies of sensation recording were observed,
staff had been trained not to expect sensation recovery during silent neuritis
and thus not to prescribe prednisolone for this condition, and
patients had had to buy their own prednisolone where prescribed and had
only bought enough for 1/12 treatment instead of the generally-accepted
minimum of 3/12.
7.5.4
Self-care implementation problems and possible solutions need to be identified, and
patients encouraged to adopt care habits that prove effective. Simple advice to
people with nerve lesions was in a few cases seen to be effective. Two ladies seen
had learnt to avoid injury. However in many cases it is not proving effective, for
example skin was observed that was not supple despite the patient’s protestations of
care, new wounds had incurred and old one failed to heal. In such cases staff need
to learn to investigate further and to supervise as patients practice care routines so
that they may identify and overcome care-implementation problems as far as is
feasible. During the visit it was very sad to see evidence of increasing disability in
a number of present and former patients, many of them young. For example, a child
with an ulnar nerve lesion has already injured his little finger twice. A young woman
with an insensitive sole has a wound that has become recurrent since first incurred
only 7 months before. All fingers are now shortened in the hands of a laundryman
who started treatment with clawing but having all of his fingers and thumbs intact.
7.5.5
Plans regarding protective footwear need to be made, implemented and monitored
in regard to effectiveness, access, durability and acceptability. There is currently no
system for systematic provision of protective footwear in either district or for advice
to patients as to what footwear to buy when special footwear cannot be provided:
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In Purulia the DLO needs to liaise with the Leprosy Mission hospital
superintendent in order to clarify when protective footwear can be provided
to patients lacking funds to buy.
The Bombay programme gifted 400 pairs of plastic protective footwear to
Varanasi 1 year ago. The effect and durability of this footwear needs to be
evaluated in Varanasi and Bombay approached to see if they are planning to
donate footwear on an ongoing basis. 3 patients were seen wearing the
footwear. In one case a sandal had caused a wound. One shoe had split
seriously but been successfully mended locally. These patients were pleased
with the footwear and it was proving durable.
The most protective footwear available through local shops and local
shoemakers, in different price ranges, needs to be identified and publicised
for patients with insensitive soles.
7.5.6
Action to minimise social dehabilitation. It was good to see the Purulia Consultant,
Dr. K. C. Das, go to visit the home of young, highly infectious MB patient and to
ascertain his home situation and the community’s social problems. His wife and
daughter had left him to move to the house of his brother’s family, on the same
compound.
A young lady of marriageable age, cured of PB leprosy, came to one DDP to check
anxiously whether or not she was getting a new leprosy patch. Staff now plan to visit
her and her parents at home to check whether or not they have anxieties and if the
diagnosis is resulting in any social or marriage problems.
Simple action to overcome anxieties at an early stage of dehabilitation can often
prevent serious rejection problems and needs to become a routine part of care ...
staff learning to routinely enquire if and how leprosy is affecting patients lives and
if they can be of help in solving problems.
7.5.7
Reconstructive surgery. In Purulia a misunderstanding existed regarding costs of
surgery at the Leprosy Mission Hospital. Thus two of the three patients seen who
would benefit from surgery were referred to the TATA hospital, to await the next
visit of Dr. Srinivasan, rather than to the Purulia hospital. No surgery service is
currently available at Varanasi. Such a service is obviously highly desirable, though
simple measures outlined above would seem to be the first priority.
7.5.8
Loans available from banks to buy work tools, a petty trading stand, a buffalo and
the like as appropriate for jobless patients, have not as yet been applied for as by
some voluntary agencies. According to Dr. Das, Social Workers might be able to
become involved in investigating use of these resources were they to learn from the
experience of other leprosy projects already doing so.
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