ANNUAL REPORT - NLR Nepal · 2019-04-10 · Annual Report Pg 1 A REPORT CONTRIBUTING TO THE BETTER UNDERSTANDING OF NLR SUPPORTED PROGRAM ACTIVITIES IN NEPAL YEAR 2012 Annual Report

ANNUAL REPORT

A Report contributing to the betterUnderstanding of NLR supported program activities in Nepal

Year 2012

Editorial Offi ce:

Netherlands Leprosy Relief,Country Representative’s Offi ce,

Kathmandu, Nepal; Po. Box 25270

Email:

[email protected], [email protected]

[email protected], [email protected]

Telephone:

+977 4252115; +977 016227564; +977 021 526571

091-522499

Fax:

+977 1 4245882; +977 021 524640, +977 091 521927

This report is published annually by NLR Nepal. This report is provided free to

all institutions and individuals working with leprosy control & CBR in Nepal and NLR

Amsterdam, WHO, ILEP etc outside of the country. In addition to this free distribution

may possible as per demand of related others either institutions or individuals for those

who may have some value of this type of report.

Annual Report Office (APO)

Netherlands Leprosy Relief (NLR)

Nepal

2012

List of abbreviations

AHW Auxiliary Health WorkerBLC Biratnagar Leprosy ClinicDLC Dhangadhi Leprosy ClinicCLAPS Community Leprosy Affected Persons for Self-helpBPKIHS BP Koirala Institute of Health Sciences CM Community MemberDHO District Health Offi cerDTLA District Tuberculosis / Leprosy AssistantEDR Eastern Development RegionELCP Eastern Leprosy Control ProjectFWLCP Far Western Leprosy Control ProjectFCHV Female Community Health VolunteersFGD Focus Group DiscussionHA Health AssistantHE Health EducationGON Government of NepalHP Health PostHS Health Staff LCD Leprosy Control DivisionMB Multi bacillaryMDT Multi Drug TherapyMOH Ministry of HealthNGO Non Governmental OrganizationNLR Netherlands Leprosy ReliefPB Pauci bacillaryPHC Primary Health CenterPHO Public Health Offi cerPLD Person with Disability due to Leprosy POD Prevention of DisabilityPT PatientPWD Person with DisabilityRFT Released from TreatmentRTLA Regional Tuberculosis / Leprosy AssistantSHP Sub Health PostCR Country RepresentativePL Project LeaderFC Field Program Co-ordinatorTO Training Offi cerLS Leprosy SupervisorVDC Village Development CommitteeVHW Village Health WorkersWHO World Health OrganizationSA Statistical AssistantNFDN National Federation of Disabled Nepal NNSWA Nepal National Social Welfare Association

Annual Report Office (ARO), NLR Nepal for 2012

SummaryAfter 3 years of witnessing the declaration of leprosy elimination at country

level leprosy elimination has been achieved at regional level at regional levels.

Having its own understanding of the indicator for the elimination worldwide,

NLR has modified its supporting strategies to sustain leprosy control activities as

well as to alleviate the consequences of the disease. Now the national leprosy

control program also has expanded its activities to care after cure through CBR

approach. In this way the leprosy control program shows its dynamism and

proves to be one of the successful programs in Nepal. The numerical burden

of the disease is decreasing including new cases, under treatment cases, child

& cases with grade II disabilities. At the same time, we consider the leprosy

burden not only the number of cases who need MDT but also those affected people suffering from its

consequences. Major consequences of leprosy are social & environmental barriers associated with

physical impairments. Stigma, loss of dignity & prejudices are the results of such consequences. There are

still many challenges on further reducing the burden of this disease in the communities.

In the fiscal year 2012, 1214 new patients were detected in NLR supported two Regions including

51 cases with DG II. New case detection rate is in decreasing trend but fluctuating which is 13.2 in EDR &

FWDR per 100000 populations during this year. Some active case detection activities were introduced in

this reporting year such as active contact examination for family & neighbours, mobilization of DAG and

community awareness activities followed by home visits. New case detection rate (NCDR) still remains

high in some of the districts indicating that transmission of the disease is still high resulting heavy leprosy

burden in the community. MB proportion in Eastern & Far Western region is 50.4% & 56% respectively.

Skin smear examination is done for more than 80% of newly detected cases. The disability grade II among

new cases is 3.6% in Eastern & 6% in Far Western region where as the additional deformities developed

in the patients during their MDT as calculated by comparing the EHF scores at the beginning and end of

the treatment is 0.11% in EDR & 1.23 in FWDR, which is quite acceptable considering the nature of disease

to develop reactions. The treatment completion rate has been sustained to above 97% in EDR & 93% in

FWDR.

For all these achievements supportive activities such as training is very essential. In the past

reporting year a total of 190 health workers were trained in our project area on leprosy & disabilities

issues. Quarterly review meetings were continually held at various levels as monitoring tools of leprosy

control activities which were very effective opportunity for on the job training to BHS staffs. Similarly,

the combined technical supervision together with regional and district authorities was found to be more

effective in administrative as well as technical on the job training for health personnel. During the reporting

year more than 70% of leprosy treatment centres in high endemic districts & District Health Offices were

visited in the project area.

As community empowerment and involvement is crucial for the successful implementation of

program, the project has carried out various activities to enhance community participation. Apart from

regular activities like patient education in clinics, distribution of reading materials and other community

education materials, we continued the community health education through affected persons & leprosy

patients. The people affected by leprosy have formed self-care groups in many areas and are being

involved in disseminating messages about the suggestive signs of leprosy, availability of free treatment

and its curability, importance of full course and timely treatment. They also share their experiences about

the need of self-care for insensitive hands, feet and affected eyes. The world leprosy day & world disability

day were celebrated weeklong including different awareness raising activities in both the regions followed

by press conferences and advocacy meetings on final day. The Netherlands Leprosy Relief (NLR) also

participated in the celebrations at national level.

Activities aiming to prevention of secondary disabilities and deformities are prime importance and

more priorities are given by our projects. POID activities in the regional clinics with some minor surgeries

in Koshi Zonal & Seti Zonal hospitals as well as the functional peripheral POD clinics and SCGs in VDCs

have resulted in decrease of referrals to other hospitals. Early case detection and proper management of

reactions and neuritis are the main stay in prevention of primary disabilities. To enhance such activity at the

field level POID services (reaction management, ulcer care etc) have been provided through some PHCs

in the districts. We also provide the assistive and protective devices to the needy patients. Counselling

service has been found beneficial for patients who find difficulties to cope with the life because of stigma

due to leprosy and its consequences.

Rehabilitation activities for persons with disabilities including leprosy affected are continuing in

Morang & Kailali as pilots. District disability management & coordination committee (DDMC) chaired

by local development officer is quite active at district levels. Our program strategy of mainstreaming

disability due to leprosy to general disability and to general community development activities has started

to show positive results at different level. We have established very good partnership with other I/NGOs

& government agencies to enhance multi sector & multi dimensional approach on rehabilitation activities

especially in Morang & Kailali. Disability due to leprosy is being given high priority. At the same time

National strategy for leprosy 2011-2015 has been finalised & published by GON on the basis of WHO

global strategy that has clearly focused for the need of rehabilitation for PWDL along with treatment &

empowerment.

Lastly, we express our sincere thanks to everybody who encouraged, participated and supported us

in this struggle to reduce the burden of leprosy & management of disabilities. We would like to express

our sincere thanks especially to the director of the Leprosy Control Division for his valuable guidelines,

encouragements and support for the program. Beside this, our special thanks go to and directors of Eastern

& Far Western Regional Health Directorates, all D/PHOs, DEOs, LDOs, WDOs, RTLOs and DTLOs for their

remarkable contribution to the program. We cannot stay aside not saying few words of appreciation to the

NLR, NFDN, NELRA, NNSWA and NLF and the GoN staffs who were involved in the programme for their

contribution to the success of the program. We also would like to thank our colleagues I/NGOs, partners

and friends in our mutual quest for leprosy control who have been always supportive.

Finally, we would like to express our sincere thanks to the Netherlands Leprosy Relief, Amsterdam

for continuous technical and operational guidelines and generous financial support, which are the most

crucial inputs for the successful running of the program. We appeal to everybody “Let us continue our

efforts to create Nepal without leprosy”

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A REPORT CONTRIBUTING TO THE BETTER UNDERSTANDING OF NLR SUPPORTED PROGRAM ACTIVITIES IN NEPAL YEAR 2012

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1. Introduction

1.1 Procedures for producing this ARO

Current report is developed on the basis of MAPA prepared on 2011 based on logical framework that

was developed during the preparation of five years NLR projects in Nepal and that of annual planning (AP)

& annual budget (AB) for 2012.

This report was prepared with the contribution from field and program coordinators and other senior

staff from NLR and implementing partners. Performances achievements of both CBR & leprosy projects of

past year 2012 were reviewed, analysed and merged to develop overall NLR progress report.

1.2 NLR support on leprosy control & rehabilitation programs in Nepal

The NLR support is provided through long-term project agreements. Since last few years, NLR has

replaced its strategy to support the national leprosy control projects and extended it to cover the disability

management and rehabilitation, through CBR approach. The emphasis is primarily given to capacity

building through training of local health workers and other implementing partners, program management,

supervision, logistics and activities related to the prevention of disabilities, health education and, where

necessary, investments in drugs, equipment, vehicle etc. NLR strives to work and coordinate activities

with other national and international organizations active in this field such as ILEP members, NGOs, DPOs

and CBR organizations.

NLR has its country representative office in Kathmandu and two field projects in Eastern and Far

Western regions of Nepal covering 25 districts (16 in EDR & 9 in FWDR). Ministry of Health and Population,

LCD, RHD, D/PHO are the partners for the leprosy control and financial support for this is provided

through government Red Book. Additional direct technical support on case management, capacity

building & supervision/monitoring is also provided from field projects of the respective areas. Support

on rehabilitation goes through NGO partners as well as related GON line ministries offices districts. For

rehabilitation services piloting is being done in two districts of Nepal (Morang – Eastern; Kailali – Far

western). As per project agreement with social welfare council (SWC) the following are the partners

mentioned in project document for NLR in Nepal;

• Ministry of Health and Population, Department of Health Services, Leprosy Control Division (LCD)

• Ministry of Health and Population, Department of Health Services, Leprosy Control Division (LCD)

and its offices in regions and distrits

• National Federation of Disabled Nepal (NFDN), Central Office Kathmandu, Regional offices

• SagarmathaApangaSangha (SAS), Saptari

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• Apang BikashSangha (ABS), Udayapur

• Apanga Sewa Sangha (ASS), Dhankuta, and Panchthar

• Nepal Leprosy Fellowship (NLF), Sunsari

• Community Based Rehabilitation (CBR), Biratnagar

• Nepal National Social Welfare Association (NNSWA), Mahendranagar, Kanchanpur

In addition to above mentioned partners; there are different networks (AIN, NLN, CBR group etc) and also

different likeminded I/NGO partners like Plan Nepal, HI, Action AID, Save the children, World Vision,

Karuna Foundation etc where NLR has established a good linkage & coordination in different activities

which contributed to the following achievements:

• Non-leprosy I/NGOs have started to include persons affected by leprosy and persons with disability

due to leprosy in their areas of support

• DPOs and their networks at districts, regional and national level have understood causes &

consequences of leprosy and started to give priority to leprosy affected persons in mainstream

disability movement.

• Persons with disability due to leprosy have started to entertain GON provisions on disability with

access to disability ID cards that was never done before

• Leprosy has been included in the definition of disability and included & incorporated in GON policy

papers

• Social stigma against leprosy is reducing, dignity, self respect & self reliance of individuals’ improved,

interactive participation is increasing.

• DPOs & other stakeholders are taking ownership of Self care groups in the communities

• Persons affected and with disabilities due to leprosy have formed district level committees in three

districts of eastern region viz, Morang, Jhapa & Sunsari

• DPOs have started to include persons affected by leprosy in their executive bodies

• Leprosy organizations & rehabilitation centers are opened up for general disabilities

• New National strategies for leprosy control has incorporated rehabilitation.

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1.3 Reporting on Indicators and targets

INDICATORS FOR ‘PROGRAMME SUPPORT’ (95)

Indicators Basic/ Optional Target (if set) Achievement

% of plans and reports received in time by HO B 2 time 100%

% of plans received in time and according to

standards by HOB 2 time 100%

% of planned RBM planning workshops

implemented according to (long-term) planningB 2 time 100%

% of planned monitoring visits by technical staff/

consultants executedB 1729 days 103% (1780)

% of monitoring visits about which a reports

has been produced, timely and according to

standards

B 1133 days 92% (1042)

% of planned NLR M&E meetings implemented B 9 time 100%

% of planned reviews and (mid-term and end)

evaluations implemented according to planning) B 6* 100%*

% of projects that were implemented successfully

(according to RO) B 2 type 100%

% of budget that has been used B 36729874 94.5%

% of counterpart funds that is released to projects

in time for useB 2** 100%**

% of staff positions in project teams filled

adequately B 31 person 100%

% of NLR programme budget covered by local

fundraising among private and/or institutional

donors

B 0 0

% of NLR programme budget covered by local

fundraising among private and/or institutional

donors

B 0 0

*These are the review meetings and mid term evaluation is planned in 2013.

**Inclusive Education is supported by Plan Nepal and DDCC Morang supported VDMC meetings

Because of some delay in budget approval we had to put more efforts on the remaining period for the

completion of targeted activities. Annual budget expenditure of 2012 is 94.5% including the expenditure

through Redbook for leprosy control support. About the reports of the monitoring visits we have developed

our own system of brief & detail reporting, reports of 1042 days out of 1133 meet that standard. Our

learning during this period is further usefulness of RBM, and we have developed & are using computerized

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software to support this system and this has helped us a lot for proper planning, timely monitoring of

implementations and achieving the results at the field projects.

INDICATORS FOR ‘CASE FINDING’ (10) Indicators Basic/ Optional Target (if set) Achievement

Number of new cases detected per year B 1214

% of new cases presenting with grade-2

disabilities/impairments B 4.2%

Proportion of child cases among new cases B 6.5%

The data presented here covers the period of 16 July 2011 to 15 July 2012 to match with GON

fiscal year to avoid errors and confusions. Number of new cases as well as new case detection rate is

fluctuating in Nepal. Grade-2 disability that is now 4.2% in NLR supported areas. Concentration of the

program need to be more on interruption of chain of transmission that may helps to bring down existing

high child proportion of 6.5%.

INDICATORS FOR ‘CASE MANAGEMENT’ (20)


% of patients who develop new/additional

disability during multidrug therapyB <1%

0.16% EDR &

1.23 FWDR

Treatment completion rate among PB and MB B >95%

97% & 98% EDR

and 90% & 96%

FWDR

Number of patients who completed treatment

successfully B All 1148

Number of people trained in self-care B All needy 1187

Number of self care groups functioning with

NLR support/facilitation B

All endemic

VDCs163

Number of self care groups established through

NLR support/facilitation (during the year)B 74 43

Since last several years the patient compliance and regularity remain at the level of satisfaction in

both the regions. This became possible because of well managed CRS (cross referral system). Patients’

diagnosed at higher level are sent to their respective VDCs for regular MDT. Regular monitoring (review)

meetings are becoming quite helpful on situation analysis and solving the noted problems at any level.

Self-care activities through mixed self-care groups are found effective not only for ulcer healing &

physical wellbeing but also to empower the individuals and reducing stigma at community level. Most of

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these self care groups will be matured after a year and be the part of Disabled peoples’ organization –

DPO. Our strategies in this regard is mainstreaming of disability due to leprosy to general disability and

further mainstreaming of disability to general development programs keeping in priority that leprosy is not

excluded. Our vision is community based inclusive development with the focus on: equal opportunities for

all, equal rights and barrier free environment especially for leprosy affected & disability.

INDICATORS FOR ‘MEDICAL REHABILITATION’ (30)


Total number of people that have been provided

with medical rehabilitation services (Total = paid

for by NLR + facilitated by NLR)

B 1671

Medical rehabilitation includes surgeries, assistive & protective devices, self-care & physiotherapy

services, treatment & referral services for complications & others related to health for PWD/PWDL. This

service can be enhanced to many more people if existing GON provisions are better implemented and

proper reporting system is established.

INDICATORS FOR ‘STIGMA’ (40


% of People Affected by Leprosy with increased

self-esteem (e.g. measured with ISMI, Most

Signifi cant change or other qualitative methods)

O

Assessment

done for 115

persons this year

% decrease in stigma towards People Affected

by Leprosy in the community after intervention

to reduce stigma (e.g. measured with EMIC

scale)

O

Assessment

done for 115

persons this year

Number/% of discriminatory policies and laws

that have been repealed or amendedB 0

It has been found from a number of studies that stigma against persons affected by leprosy is

caused mainly due to ulcers & impairments. Because of self care activities through self care/help groups

& establishment of POID centres at peripheral level ulcers are healed easily. Disability due to leprosy has

been mainstreamed into general disability and disability issue is now started to be taken development

issue rather than individual problem so that perception as well as attitude of the community people has

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been changed. Our strategy of “change the system to fit the individuals but not to change the individuals

to fit the system” is found appropriate to reduce stigma and to increase dignity and self reliance of persons

affected by leprosy.

INDICATORS FOR ‘NON-MEDICAL REHABILITATION’ (50)


Total number of people who received education

support (Total = paid for by NLR and facilitated

by NLR)

B 42

% of relevant meetings/workshops in which

People Affected by Leprosy participatedB

136 groups

(about 75%)

Total number of people that received services

aiming at economic production (Total = paid for

by NLR + facilitated by NLR)

B 52

For education support, we are supporting to promote inclusive education at all level to meet set target

of education for all. In Morang & Kailali projects out of 1149 (596 EDR & 553 FWDR) public schools 739

(380 EDR & 359 FWDR) have started to be transformed into inclusive schools. A total of 592 persons (47

DEO staff, 150 school management committee persons, 395 school head teachers) have been trained so

far on inclusive education. DEO reports from both piloting districts show that in both the districts around

5% of total school going age children are still out of schools in overall district and it comprises Dalit

(untouchable), marginalized groups & children with disabilities. Similarly, in Sunsari a total of 427 persons

(32 DEO staff, 30 school management committee persons, 365 school head teachers) have been trained

and all 365 public schools started to be transformed into inclusive schools. NLR, NFDN, DEO & Plan

Nepal has made the joint effort for these all achievements. We together with other partners also provide

individual support for really needy students and this year we provided such support to 42 persons with

leprosy and disability.

Apart from the two pilot districts, we also provide some technical & financial support through our

partners in other endemic districts also. Since, CBR is multi sector & multi dimensional strategy, although

overall achievement is tremendously high it is difficult to identify contribution of individual organization.

NLR role in this is that of facilitator to promote this concept. Here we have mentioned the achievements

depending on financial support of NLR. In the past fiscal year vocational training supports are provided to

84 places and IGP support to 55 groups so the numbers of individuals getting support aiming at economic

production is still higher than 96 persons that will be reported later by the partners.

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Other INDICATORS

Item: Information Details:

Number of health centre staff trained for leprosy 190 15 POID training & 175 BLT

Number of people under treatment for leprosy in

NLR supported areas

868 MB – 594 & PB – 274

Number of contacts of patients examined 2961 Including neighbours & relatives

Medical rehabilitation facilities established/

supported

69 centres POID centres supported

Number of people provided with orthopaedic

footwear

945 Protective footwear

Number of people provided with reconstructive

surgery

70 persons This year only

Number of people provided with prostheses 33 persons Through partners

Number of people provided with wheelchairs 62 Through partners

Number of people provided with vocational

training

86 groups Majorities of them are SCG

Number of people provided with microcredit’s/

loan

55 groups Groups to provide to individuals

Number of people financially supported for

education (primary school, high school or higher

education)

23 persons 21 children of leprosy affected

persons (by partners & others)

Cars/(motor)cycles bought 0

The national program has given high priority for contact examination. This includes the not only the

patients’families but also neighbours of index cases. The target given for health workers is surrounding

10 houses of index cases.

Achievement of prostheses seems quite low this is because of less service providing centres and also

the services are quite expensive. As mentioned earlier, rehabilitation requires multi sectoral cooperative

approach it is difficult to identify the percentage contribution of NLR. The lessons we learnt here are;

o Better results are achieved if the government system incorporates requirement of the people

o Advocacy & lobbying for the implementation of existing policies are important.

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2. Epidemiological situation

Our record shows that since the last eleven years (2002 to 2012) a total of 24229 new leprosy cases

detected in NLR supported regions. Out of detected new cases 2006 are children under 14 years, 1124

detected with DG II and 8550 are female. During this period 226 cases reported as relapsed, 25518

completed the prescribed treatment where as 593 defaulted from the treatment. The following table

shows the detail year wise statistics;

2002- 2009 2010 2011 2012 Total

New case 20650 1180 1185 1214 24229

Relapse 199 8 7 12 226

RFT 21864 1356 1150 1148 25518

Defaulter 452 12 22 7 593

Child 1762 93 72 79 2006

DG II 982 42 49 51 1124

Female 7326 453 384 387 8550

Table shows the fluctuating trend of relapse, defaulters, child and increasing trend of DG II cases over

the past three years. Number of RFT cases seems more than the new detected cases because treatment

restarted & transferred in cases are not included in this table. The major thing that we achieved during this

period is patient compliance and regularity, as we can see from the table that ignorable or few numbers

of cases are being defaulted from the treatment in recent years. This was possible when we started the

system of referring the detected cases to their own area for MDT.

The absolute number of new cases of leprosy are not decreasing, on the contrary slightly increasing

every year. Early diagnosis is promoted and very few cases are being reporting with grade II impairment

at the time of diagnosis. The main problem of leprosy is now reaction and disability management of the

new as well as old treated cases. The epidemiological trends over the last 11 years have been furnished

in the following diagrams;

2.1 Trend of annual new case detection rate (ANCDR)

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Figure shows decreasing trend in EDR & fluctuating trend in FWDR of new case detection rate over

the last eleven years. ANCDR was quite high in 2002 because leprosy elimination campaign – LEC was

conducted in high endemic Terai districts. It is gradually decreasing in following years but the value seems

still high that is 1.3 per 10000 populations in the year 2012. New cases are continually detected in the

communities and the rate is still higher in Terai districts. GON has given more emphasis on contact tracing

through index case approach for active case detection. According to this approach health workers &

community volunteers are instructed to identify the suspects in the families and 10 houses surrounding the

detected cases. In addition to this rapid surveys & skin camps are also being done in high endemic clusters.

2.2 Trend of MB proportion among new cases

Figure shows fluctuating trend of MB proportion among new cases over the past eleven years. In

2002, the year of LEC in leprosy endemic districts, more PB cases were detected so the MB proportion is

quite low. WHO criteria of classifying patients having either more than 5 skin patches and/or more than

one nerve involved and/or skin smear is positive as MB leprosy is followed in Nepal.

2.3 Trend of child proportion among new cases

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Figure shows fluctuating & decreasing trend of child (below 14 yrs of age) proportion among new

cases over the past eleven years. In 2003 this proportion seems quite high in EDR because of massive

school survey done in Saptari (one of the leprosy endemic) district. Child proportion is still high indicating

the recent transmission in those clusters. This might be one of the problematic areas where leprosy

control program in Nepal should focus more in future to interrupt the chain of leprosy transmission in high

endemic clusters.

2.4 Trend of DG II proportion among new cases

Figure shows the decreasing trend with some fluctuation of DG II proportion among new detected

cases over the past eleven years. No proper reporting system exists for the additional deformities from

all level but our finding from referral clinics, some of peripheral POID centres & PHC/HP shows that it is

less than 1% based on cohort report of the same cohort patients. There are some possibilities that when

the affected persons with anaesthetic hands and feet (DG I) stops coming to health centres can easily get

ulcers. If proper care for ulcer is not done there is possibility of further worsening of impairments. Hence,

there might be more persons in the communities with different impairments in covered in this data. New

attention need to be paid by LCP for the surveillance of leprosy affected persons even after RFT. From the

past year 2012 we have started to keep inventory of all affected persons from the low endemic districts,

until now records are updated in three of the districts.

2.5 Trend of female proportion among new cases

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Figure shows fluctuating trend of female proportion among new cases over the past eleven years.

It shows that around 32% of total leprosy affected persons are female. Gender discrimination & gender

violence still exists in Nepal. Leprosy is stigmatized disease (although the level of stigma is reducing).

Women with leprosy may have double discrimination; one being a women and the other women with

leprosy. Situation analysis of such issues need to be done and more focus need to be paid for gender

equity & social inclusion. LCP should incorporate women empowerment activities to ensure social dignity

& social justice of leprosy affected females.

2.6 Trend of treatment completion rate (TCR) for MB (Cohort report)

2.7 Trend of treatment completion rate (TCR) for PB (Cohort report)

Figures above show increasing trend of treatment completion rate among both MB and PB cases

over the past eleven years. It is obvious that patient compliances started to improve after MDT services

were made available at every VDC level after 2002. Here completion rate is calculated on the basis of

cohort reporting system.

Treatment completion rate of PB is almost 100% but we do not include those who were initially

classified as PB but changed to MB & transferred out as well so that this is only over 95% in past fiscal

year.

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3. Qualitative information

3.1 World Leprosy Day

Leprosy day, as initiated & started by Raul Folerau & his team at 1953, is celebrated on last Sunday

of January every year. For the celebration of 59th word leprosy day in Nepal (2012), LCD director formed

a team of GON & INGOs working in leprosy and visited all regions starting from eastern to far western

boarder of the country, attended the celebration functions and observed the rehabilitation models &

approaches practised by different organizations. It was expected that the findings will help to design a

common understanding of leprosy rehabilitation activities in Nepal. NLR was the part of the team. This

type of LWT exercise is not only for better coordination between the stakeholders but is also a good forum

on learning & correction of errors.

In addition to learning visits

different other activities were planned

and implemented in that week in

our regions for the celebration of

59th world leprosy day for example:

messages through e-media and print

media; interaction and coordination

meeting with DDC, DPHO, DEO,

WDO, DDC, DDMC & other CBR

organizations; orientation to various

groups on causes & consequences

of leprosy; articles & publications;

meeting with zonal hospitals to enhance ownership of RLRC; interaction with journalists; mass rally &

celebration by DPOs/SCG; celebration in RLRC (quiz contest among leprosy affected persons & drug

sellers; drawing (arts) competition among leprosy affected persons; fruits. t-shirts & blankets distribution

for admitted persons); new case detection activity by training and mobilizing of FCHV in leprosy endemic

areas.

3.2 Stigma reducing activities

Stigma against leprosy is associated with ulcers & other impairment rather than the disease itself.

Ignorance & negligence of ulcers & impairment by affected persons can cause the secondary problems

such as bad smell, looking ugly, pus, etc that is very difficult to tolerate by others. So the first preferences

is to teach the affected persons on self care activities for proper management of own impairments from

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getting further worsening. If such activities are done in a group peers get mutual help & encouragement

from each other. If these are only leprosy specific groups they will not get any more support from remaining

part of community peoples and again it is easy to be pointed out as “Leprosy affected” gatherings. If other

persons having the more or less same problems but causes may be different, such as persons with

disabilities due to other causes, diabetics, neuropathy etc also join the groups a pronounce part of the

communities are covered. Now such mixed groups owned by DPOs can work together to improve their

self-reliance and dignity. Second part is the environmental barriers & attitude of the community peoples

towards leprosy affected persons. They need to be oriented on causes, consequences, transmissions,

impairment treatment and cure about leprosy.

Following are the some of the major activities we did for stigma reduction at

community level:

• Community awareness activities by direct talks and discussions

• Messages through electronic & print media preferably in local languages

• Formation of mixed self care & self help (DPO) groups

• Community level activities enhancing more community ownership on the program

• Mainstreaming of leprosy related disabilities to general disabilities

• Comprehensive PIOD activities through POID centers

• Promotion of inclusive education to transform the existing societies to

inclusive societies

Case story of Aasha Kumari Choudhary (30 years old female)

Aasha Kumari Choudhary, a leprosy affected girl, is an inhabitant of Hariharpur

VDC of Saptari district who belongs to a very poor family. Her father is also a

leprosy-affected person. Four brothers of her father are living separately. At the

beginning her father did know about the disease, due to tingling sensation of his

hand and feet he has taken other medicines from district hospital. There was no

any improvement of that tingling sensation. Once when he was ploughing the

field, hard root of maize plant penetrated his feet making a wound but he was

unknown, even then he didn’t go anywhere for treatment.

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Aasha says that, she was 10 years old when she got leprosy. She felt tingling sensation in her hands

& feet and couldn’t walk around. Her feet were swollen. Her father took her to nearby treatment centre for

check up. It was not cured for long times so she was referred to a doctor in district headquarter of Saptari,

but again no any improvement was noticed, rather worsened. Her mother was taking care of her.

One-day a documentary film was shown in her village to aware community people about sign &

symptoms of leprosy & its consequences. When this was done her father and other neighbours suspected

her leprosy. She and her farther, after check up, were diagnosed leprosy. After listening that he got

leprosy, her father was so frightened that he could not speak any anything anymore just kept staring. Her

mother started crying, hardly distressed, that worsened her condition and became mental illness.

After knowing that she got leprosy she was worrying how to meet & talk with her friends and afraid

of her relatives if they visited to her house. She was feeling that her thinking capacity was abandoned.

Leprosy worker suggested her father to get MDT from nearby health post but denied because of fear that

other people could know about his disease. Her father was having a fear of exclusion from the society and

exclusion from the feast during festivals & celebrations.

Later on Aasha & her family came to know that not only them but other people in their communities

are also affected and taking medicine from health post, hence, they started MDT for 24 months. On getting

MDT from health post she wanted to accompany her aunt’s children but due to the fear of transmission

her aunt didn’t allow and further stopped her children to meet Aasha & her farther. Aasha was unable to

do any work, her mother was already disturbed & stopped working there was only her farther to look after

the household & other works. Her aunt used to call her as “leper” and due to fear of disease others didn’t

come near to her. Her survival was at stake.

After some time self care group & activities were started in her village. She joined the groups. SCG

with the assistance from local health worker she was referred to tertiary level referral centre for correction

of her impairments. She stayed there for 6 months & surgical operation was done. She also learnt about

taking care of her hands & feet. She was sent to that hospital the second time for correction of her hand

and stayed there 6 months more.

She was an adolescent now and people started on talking about her marriage but for a leprosy-

affected girl it was not easy. Her elder sister managed a boy for her & proposed for marriage. She was

thinking that, being leprosy affected girl there would be some problem later on in their relationship of

conjugal life so she didn’t accept to marry him. Her sister further insisted but her father suggested that

it was up to her so that she denied even she was interested. She said that her family condition was such

poor that she wanted to leave it & go somewhere. But, she didn’t know where to go, with hand operated

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twice and the problem in the feet resulting impossible to walk a long distance. Later some improvement

was seen in her hand & feet.

In 2010, during the reformation of self care group in her village, she & her father became the members

of that group. She is already trained and learnt about self-care activities from referral centres but now

joined the group to accompany her father. But, her father being the only her father for their household

activities didn’t have sufficient time for such activities she said. After her repeated pursuance, he started

soaking his feet for brief before going to work and during night he was over tired of work & went to bed

after meal, that is why her father’s wound recurs frequently.

Nowadays, she and her father are the active members of that self-care group in their village. They

are regularly attending the group meetings and assisting other members about such activities. Aasha is

now the member of micro credit and saving scheme and has started saving. Because of problem in her

feet, she can’t walk a long distance but feel comfortable to a short distance. She can go to nearby grocery

to buy and can help her father on cooking. Now she attends the wedding and other ceremonies in the

villages which she could not do before. Her aunt & others do not use discriminatory word to call her and

started to visit her family. She says, nowadays our neighbours’ attitude towards our family has been

changed as they know leprosy is curable, I am happy with this.

Due to poverty her father is compelled to do different household works even he needs the rest. That

is the reason why his wound is not healed. She said why this disease is common mainly for poor? They

are not facing with hand to mouth problems but also the burden due to disease!

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4. Research & study – Self care group assessment

NLR Nepal is being involved on different types of studies including international multi country

researches. In 2010, after getting approval from Nepal health research council (NHRC) we have started

a study that entitled “Assessment of self care group activities among persons with leprosy related

disabilities”. In this study the impact of self-care activities of persons who are participating in self care

groups (SCG) and those who are not involved in SCGs of leprosy-related disability will be compared. Not

only the impairment, but together with restrictions in participation, activity limitation influenced by stigma

cause disability. Since the several self care groups are well functioning in the field, clarity of what should

be measured as the impact of being a member of a SCG is needed. In this study, medically the level of

foot and ulcer will be assessed and socially self stigma and participation in the wider community is being

looked at.

The present study is being conducted in Eastern Region of Nepal in Morang (4 groups), Sunsari (2

groups) and Saptari (2 groups). 60 SCG members and 60 none-SCG members with disabilities due to leprosy

will be included, of which 60 non-SCG members will be assessed from Jhapa, Sunsari, Saptari & Siraha.

These 120 persons will complete the Feet assessment questionnaire, Wound assessment questionnaire,

The Participation scale (The P-scale) and the Explanatory Model Interview Catalogue (EMIC). The main

focus of the study is on providing evidence on impact of self care activities through self care groups in

order to give information to design and support appropriate interventions. In addition, what determinants

of disability are influencing participation restriction will also be looked into. First year data collection of

this study has been completed so far and we are about to complete the collection of data for 24-month,

the final month of this study.

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Some other major studies done through NLR in Nepal until now are as follows;

SN TitleDate &

duration

Principal

Investigator

1Assessment of Self-Care group activities: Among

persons with leprosy related disabilities2010-2013 Nandlal Banstola

2The impact of disability of a family member on the rest

of the family in the Eastern region of Nepal2011 Nandlal Banstola

3

Leprosy related disability and the association with

secondary mental health problems in the Eastern

region of Nepal

2011 Dr. K. P. Dhakal

4Further validation & reliability testing of the participation

scale2010 Nandlal Banstola

5 Rapid disability appraisal (disability survey) in Morang 2009 Nandlal Banstola

6 Quality of life of people with seeing related disabilities 2008

7 Quality of life of persons with dishabilles due to leprosy 2008

8 COMLEP 2006/2007

9 Accessibility of physiotherapy for leprosy patients 2006

10Community health education followed by impact

evaluation (KAP survey)2005

11 Quality of leprosy services from clients’ perspective

15 January to

06 February,

2004

12Feasibility study for implementation of M. leprae lateral

flow test2004/2005

13Effectiveness of prednisolone treatment of leprae

reactions and neuritis (retrospective study)2001

14 Impact of NLEC in public awareness about leprosy 1999

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5. Financial analysis

The following diagram shows some financial status of NLR support in Eastern Nepal;

Figure shows that out of total planned budget 89% has been allocated to leprosy control program

including rehabilitation where as 11% was allocated to rehabilitation pilot projects (general rehabilitation).

Out of total allocated budget 94% expenditure made on leprosy, 96% for rehabilitation where as total

expenditure of 2012 is 94% of total allocated budget.

Figure shows that out of total budget allocated 12% was admin budget & 88% was program budget

(this program & project budget has been defined on NLR RBM system). 88% expenditure is made out of

allocated program budget and 94% expenditure is made out of total allocated admin budget. According

Pg 19Annual Report



to NLR RBM system overall budget is divided into program & project budget differentiating CRO and field

projects. So that admin budget here includes cost for admin staff, house rent and other managerial costs.

Figure above shows the GON & NGO wise expenditure of program budget supported by NLR.

Expenditure made by NGOs seems quite higher because of CBR budget including piloting districts that

goes through NGO partners. GON and especially health program has recently started some initiations on

incorporating CBR but still lacking adequate structures.

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Figure shows the higher percentage of expenditure in Morang and Kailali because of rehabilitation

pilot project support for general as well as leprosy related disabilities. This pilot project is being phased

out by mid July 2013.

Figure shows higher percentage of expenditure made by NFDN in EDR as it includes other member

organizations at different districts. Expenditure made by NLR is still 16% in EDR & 81% in FWDR this is

because of hospital cost of regional leprosy referral clinic in Biratnagar & Dhangadhi. These clinics are

planned to handing over to Zonal hospitals existing in the regions within this project period. The process

has already been started but it still takes few more years.

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6. Some initiatives for local funding

NLR in Nepal, started to look for program funds out of its own. During the year 2012, we tried to

explore for available resources. Some examples of initiatives which we started:

1. This year, like last year also, we were able to include our agenda Plan Nepal’s annual PoA and

implemented together. eg training of teachers for inclusive education etc in ELCP area.

2. Now the government program has started to spend on patients’ travel cost for referrals, some

protective devices etc which previously we used to pay.

3. In Far West region, we were able to raise small fund from local business community for distribution

of tricycles to 12 needy persons with disabilities including persons affected by leprosy.

4. Discussion with local KOICA office is going on to work in partnership in five VDCs of Kailali

5. Dialogue with a local airline company is also continuing for their support in our work

6. NLR Nepal together with HQ prepared and submitted a number of funding proposals to different

donors but not yet succeeded eg: Post code lottery, Sight Savers and Firah.

7. We are still planning to write one or two proposals this year.

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7. Conclusion and recommendations

NLR is providing financial & technical support on two projects; leprosy control & rehabilitation of

persons with disabilities (PWD) in Eastern and Far western regions of Nepal. For rehabilitation, special

piloting is being done in Morang and Kailali districts. Budget for the disease control goes through GON

Redbook where as rehabilitation support goes through the NGO partners as mentioned in NLR project

agreement with the government. Programs as well as financial expenditure achievements of past fiscal

year are quite encouraging to meet the indicators as mentioned in NLR planning through LFA for this

project period 2011 – 2015. Besides this following are the major recommendations made to make this

project period grand success;

• • GON need to initiate taking over the ownership of regional level leprosy referral clinic by KZH &

SZH that is located within its premises

• NFDN and its network organizations should play the major role to enhance better coordination &

cooperation with related government line agencies and ministries

• Disability is developmental issue, it is social problem rather than the individual one and hence GON

agencies need to consider this as a high priority concern & plan accordingly

• Lot of progresses has been made on mainstreaming of leprosy related disabilities to general disabilities.

PWDL are getting absolute opportunities to entertain entitled GON provisions & facilities but still they

are passive receiver rather than the active community contributors. NFDN and others still need to

pay high priority for the capacity building & empowerment of PWDL ensuring their leading or decision

making roles.

• More activities are still needed to change the charity mind set of related stakeholders on both disease

control & disability management issues

• Strong monitoring mechanisms at national & sub national level needed to be established for the

proper implementation of already existing policies & strategies such as MDG, UNCRPD, CRS etc

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Pg 24 Annual Report



Documents

ANNUAL REPORT - NLR Nepal · 2019-04-10 · Annual Report Pg 1 A REPORT CONTRIBUTING TO THE BETTER UNDERSTANDING OF NLR SUPPORTED PROGRAM ACTIVITIES IN NEPAL YEAR 2012 Annual Report