PROFILE
PROJECTS

SWISS EMMAUS LEPROSY RELIEF WORK-INDIA

Brief Profile

Swiss Emmaus Leprosy Relief Work India (SEI) is a secular non-profit organization. Swiss Emmaus Leprosy Relief Work India started its work in India in 1960 and initially worked to eliminate leprosy as a public health problem. For over 50 years, SEI has dedicated itself to improving the lives of people affected by leprosy, tuberculosis and other poverty related diseases through social and medical rehabilitation. Swiss Emmaus Leprosy Relief Work India (SEI) is registered by Registration of Trade Mark, section 23 (2), Rule 62 (1), Trade Mark No: 1757777, dated: 25/11/2008.

Swiss Emmaus India has been involved mostly in Leprosy control activities since last more than five decades in the country and through its 40+ NGO partners all across the country has been successfully completed treatment for 3.12 lakh leprosy cases. In 2013, there were 8 partners working for Leprosy and their achievements are as follows. Among them, 5 are Govt. of India recognized Referral hospitals for provision of specialist services to the leprosy affected people for various complications. Among the beneficiaries, overall on an average 15-20% belong to pediatric age group, who mostly avail Reconstructive surgeries for their disabilities.

Achievements during the year 2013 - 2014

Details of the services

Total

No. of leprosy patients treated for complications

66,463

Number of patients treated for reactions

1,140

Self reported new leprosy cases diagnosed and referred to Govt. centre

1,805

No. of admissions

12,060

No. of Ulcer cases managed

7,553

No. Of Reaction cases treated

1,140

No. RCS operations performed

774

No. of MCR footwear provided

10,500

Swiss Emmaus India also contributes to Govt. of India’s National Leprosy Eradication Program in some of the selected states like Goa and Andhra Pradesh. Our experienced Leprologist Dr. Thomson Sugumaran facilitated the training of the 40 new medical Officers in Goa as one of the Master Trainer. Besides on request from Govt. of Srilanka, the assignment of training of 54 Physiotherapist in Srilanka was taken up and Dr. Sugumaran successfully completed it in collaboration with WHO-India office.

Leprosy may lead to disability and to prevent the disability among the new patients, Swiss Emmaus India has been implementing a pilot project in 2 high burden districts of Andhra Pradesh since 2010. This project aims at strengthening the Primary Health care system for effective delivery of National Program activities with emphasis on prevention of disability through early detection of leprosy cases. As part of this initiative, we have trained more than 200 Medical Officers in both the districts and 250 key staff from each staff from each Primary Health Centres (PHC). This training was aimed at reaching the 8000 + Accredited Social Health Activists (ASHA workers) who are the basic grass root level workers in the rural areas to suspect and refer the leprosy cases to the PHCs. Swiss Emmaus Leprosy Relief Work India reached another milestone when Mr.Rene Staeheli (Managing Director, FAIRMED , Berne) was elected as ILIP President for the second term.

Summary:

This year through the five, SEI supported tertiary care hospitals more than 20000 patients accessed out-patient services ranging from ulcer care to general aliments, while over 5000 patients accessed the in-patients services including 397 patients undergoing reconstructive surgeries and follow up services. Apart from providing high quality medical services, with active convergence with government and other NGOs the referral hospitals were successful in providing access to various other socio-medical needs of PALs and their families.

The year two quality circle meetings were conducted in Palamaner and Chennai; these meetings are experience sharing and learning platforms wherein all the SEI partners are invited.

The outcome of the “Output Based AID” exercises to benchmark costing (initiated in 2006)of services and human resources required for the same, has helped in standardizing the core service areas for both In and out patient categories and the corresponding personnel needed to provide that particular services. In all 11 key services (3 OP and 8 IP) were identified and finalized and the hospitals were divided into two categories - 30 and 60 bedded. Based on which the budgets per hospital for the year 2013 were finalized.

The pilot Prevention of Impairment and Disability(POID) project in East Godavari and Guntur was extended until end of December 2013. The impact of services has led to - Improved status of PALs with grade 2 disabilities increased from 4.28% to 41.33% the highest by practicing self care, mostly due to wound healing; Number of PALs living with irreversible disabilities and keep their eyes, hands, and feet in good, functioning condition has raised from 56.6% to 91.4% through home based self care practice; All newly diagnosed cases with neuritis have access to prednisolone treatment at the PHC level; The concept of integration of leprosy is visible by sharing the tasks / responsibilities between medical officers, DPMOs, nurses, pharmacists. An End line evaluation was completed with help of external consultants.

Based on inputs proposed by Mr. Thomas Gass, Program Head, FAIRMED, Switzerland during his maiden visit to India, two proposals merging the Prevention of Impairment and Disability(POID) and OBA components into a Comprehensive District Leprosy Control Program were submitted to HQ for approval, to be initiated from 2014. To this effect, a MoU has been signed between Government of Andhra Pradesh, the local partners and Swiss Emmaus India clearly specifying the role of each stakeholder.

Considering the value addition created through LSS interventions and the potential needs in the slums areas, it was proposed to explore the possibilities of extending the collaboration in a different form. A Needs Assessment exercise using services of an external consultant was conducted.

As part of providing technical support to low endemic state National Leprosy Eradication Programme(NLEP) program, One joint monitoring visit comprising the Assistant Director General (ADG) of the Central Leprosy Division (Dr. A. K. Puri) and the National Leprosy Eradication Programme(NLEP) consultant (ILEP representative) was carried out in Panipat and Sonepat districts of Haryana. Following the success of the Haryana model of providing technical support and based on the request of the Central Leprosy Division, Govt. of India, Swiss Emmaus India agreed to extend the similar support to the neighboring states / UT like Chandigarh, Punjab and Himachal Pradesh.

The year 2013 was eventful and we made some significant strides in local fundraising, through direct mailing, lucky draw event, school and corporate fundraising. As part of new initiative started the Tele-marketing unit in Chennai, the objective of this activity is to expand the warm & cold donor base and simultaneously encourage monthly donations through ECS.

Tertiary Care to People affected with Leprosy (PALs):

One of the core services of Swiss Emmaus India (SEI) is to provide tertiary care facilities to leprosy affected people through many of its referral hospitals supported across the country. Since last few years the number has come down, now there are only 5 hospitals located in Andhra Pradesh, Karnataka and Tamil Nadu.

These hospitals have been involved extensively in the roll out of MDT services in the country as well as provision of specialized care for the Leprosy affected for more than three decades. The specialized services include both out-patient as well as in-patient care for management of reaction and neuritis, ulcer care, reconstructive surgeries and provision of Microcellular rubber Footwear and self-care kits. These hospitals also provide diagnostic services to new and complicated forms of leprosy, to patients referred from within and neighboring states. .

With active convergence and linkage with NGOs and Government at all levels, these hospitals facilitate other medico-social needs of PALs like cataract operations, provision of aids and appliances, access to various social welfare schemes, etc.

The hospitals are as follows:

Andhra Pradesh:

  • Emmaus Swiss Leprosy Integrated Project, Palamaner, Chitoor District
  • Gretnaltes, Morampudi, Guntur District
  • Rural India Self Development Trust, East Godavari District

Karnataka:

  • Hubli Hospital for Handicapped, Dharwad District

Tamil Nadu:

  • Sacred Heart Leprosy Centre, Kumbakonam, Thanjavur District

Swiss Emmaus India was first to bring in the concept of Result based funding in the field of Leprosy in India under the name of “Output Based Aid (OBA)”. In order to streamline the funding mechanism and scientifically estimate the budget for the hospitals, SEI established the processes to clearly ascertain the core service delivery areas, , derive the cost per service, and subsequently benchmark the costs. This process was piloted in 2006 involving a team of cost-accountant, key hospital staff, programmatic and financial staff, as well as the North Western University of Applied Science, Switzerland in one of our supported hospital, RISDT. To start with, real time expenditure for a calendar year was considered while deriving costs per service. Complete treatment expenses including medical supplies, general supplies, number of bed occupancy days, food, staff salaries, and other overhead costs were factored in while finalizing the cost.

Patients were divided into 11 different categories in-patient [IP] and out-patient [OP]) on the basis of which, cost for each category was calculated. Most importantly the number of patients being provided service played an integral part in finalizing the budgets per hospital. Patient uptake of services was reported through SEI’s Hospital Information System (HIS).

Review of the costing exercise for all the five hospitals was undertaken, after which it was suggested to arrive at a suitable benchmark cost considering the third Quartile (Q3).

Standardization of Human resources:

The SEI’s OBA exercise saw some major changes in the year 2013. Based on our previous observations, an initiative was undertaken along with the Tata Institute of Social Sciences (TISS), Mumbai to standardize the human resources engaged in the SEI supported hospital for providing the services. The team from TISS went to all the hospital with a semi-structured tool to assess the burden of various services, the staff required for that particular service, compare the staffing pattern with some of the available norms and make recommendations for all the 5 hospitals.

Upon completion of the assignment, the team came up with a recommendation to divide the hospitals into 2 categories (30 bedded and 60 bedded). It was also observed that except one hospital (ESLP, Palamaner), all the hospitals were closely fitting to the recommended staff strength for the existing work load in their hospitals. They also recommended having a social worker in all the hospitals to provide the counseling services to the patients, which is one of the key interventions to improve adherence to the MDT treatment as well as practice of self care.

In 2013, SEI undertook the exercise independently utilizing its own resources and taking the expenditure for the financial year 2012-13. The audited financial statements were utilized for this purpose.

The Human resources standardization report findings helped to factor in the reduction in the staff in ESLP, Palamaner. This exercise not only resulted in uniformity of staff structure across the hospitals and but also brought out the realistic benchmarked unit cost for the services.

The outcome of the HR exercise as well as the benchmarked unit cost was shared among the partners and the Headquarter. It was finally decided to freeze the unit cost of this year, with a yearly increment in the subsequent years based on a mutually agreed inflation indicator and to review the unit costs again after 3-5 years.

Prevention of Impairment and Disability(POID) Pilot Project in Andhra Pradesh:

  • SEI had launched a pilot project to prevent disability due to Leprosy in the 2 high prevalent districts of Andhra Pradesh in collaboration with Govt. of Andhra Pradesh and 2 local Non Govt. organizations RISDT in East Godavari and Gretnaltes in Guntur. In both the districts all the 110 PHCs were covered. This was a 3 years project and was launched in Sep. 2010. The Prevention of Impairment and Disability(POID) pilot project, which was initially planned till Sep. 2013, was given an extension till end of Dec. 2013 and it was successfully completed. However, extraneous factors and political instability affected the field work significantly.
  • SEI considers this project as a pilot model to prevent disability among leprosy patients through strengthening the Primary Health care system for delivery of the National Leprosy Eradication Programme(NLEP) services in the following manner.
  • One senior staff (PHN / MPHEO / MPHS / MPHA) in each PHC was identified as the point person for the Prevention of Impairment and Disability(POID) project and designated as GOPOID (Govt. official for POID project) and were trained in both the districts. Later they were re-designated as National Leprosy Eradication Programme(NLEP) Nodal officer / coordinator to expand their scope to all the National Leprosy Eradication Programme(NLEP) activities. All 200 such officials from the PHCs of both the districts have been trained on the National Leprosy Eradication Programme(NLEP) program and the Prevention of Impairment and Disability(POID) project deliverables.
  • Considering the importance of the PHC Medical Officers in implementation of the Prevention of Impairment and Disability(POID) project and more so in National Leprosy Eradication Programme(NLEP) program, we trained 250 PHC Medical Officers of both the districts (newly appointed and Old) in 2011-12. All the PHC Medical Officers were also trained on Nerve Function Assessment (NFA) and recording.
  • In order to promote early / timely detection of leprosy cases, ASHA (Accredited Social Health Activist) workers in the PHCs were considered as the key staff in the PHC. Through this project we trained 200+ ASHA Coordinators (those who are point person for ASHA workers at the PHC level) from each PHC in both districts in 6 batches in 2011-12 as the Master Trainer to train the ASHA workers in their respective PHCs.
  • Timely issuing of MDT and prednisolone to the patients is one of the important ways to prevent disability among leprosy patients. FAIRMED with its influence could issue orders from Central Leprosy Division to ensure continuous availability of prednisolone in the PHCs.
  • Development of the linelist of all the patients (Old & New), capturing all the services like reaction management, ulcer management, RCS operation, MCR footwear supply, cataract operation, issue of disability certificate, issue of pension, ration, any aid etc was initiated.
  • As part of the project, SEI supported placement of 2 mobile teams in each district from the beginning. These 2 teams consisting of a counselor and physiotherapist visited all the PHCs in the district once in every quarter and conducted Prevention of Impairment and Disability(POID) camps in the PHCs. The teams used to train old leprosy patients on home-based self care practices, training staff nurses on dressing of wounds, updating the linelist, referral of patients for higher level care (RCS, reaction management or Ulcer management), cataract operation etc.
  • SEI had appointed a Backstopper (Dr. S. A. Ramakrishnan) since Sep. 2011 for visiting the projects in both the districts every quarter to give his inputs about the achievements, quality of services and identify areas for further improvement. He could complete 9 backstopping exercises in both the districts, except for the last one which could not be executed in East Godavari due to political unrest in that region.
  • Cohort analysis of all the cases diagnosed since 2010 with regard to the disability was also done.

Collaboration with the support department like NRHM, DRDA, National Blindness Control program / District Blindness Control Society and other Voluntary organizations working in the field of Blindness control etc.

Impact of services to PALs in Prevention of Impairment and Disability(POID) project - Key Observations from the Backstopping Visits:

  • Number of PALs status improved with grade 2 disability has increased from 4.28% to 41.33% the highest by practicing self care, mostly due to wound healing.
  • Number of PALs who live with irreversible disabilities and keep their eyes, hands, and feet in good, functioning condition has raised from 56.6% to 91.4% by home based self care practice.
  • Number of PALS who got worse is reduced from 14.7% to 2 % which is the least and further reduction will not be realistic / possible in the field condition mostly due to complicated foot and/ or with foot ulcers.
  • Access to eye Care for PALs has increased from 100 to 1000 PALS by doing refraction, cataract operations through net working with other NGO and government health services in the district.
  • There were no recurrent foot ulcers seen amongst the cases evaluated during all back stopping visits. .
  • All immobile PALs evaluated (50 to 100 PALs) got health care from the PHCs/ mobile teams.
  • All PHCs visited have at least one leprosy trained staff to diagnose, treat, and manage leprosy related complications.
  • All newly diagnosed leprosy cases have valid and reliable base line information in the records at the PHC level and MDT is available to treat these new cases. .
  • All newly diagnosed cases with neuritis have access to prednisolone treatment at the PHC level.
  • The concept of integration of leprosy is visible by sharing the tasks / responsibilities between medical officers, DPMOs, nurses, pharmacists.
  • Line listings of all old PALS as well as the new cases are up dated.
  • CBR in Prevention of Impairment and Disability(POID) is integrated through DRDA.

Lessons Learnt:

  • Total integration of National Leprosy Eradication Programme(NLEP)/Prevention of Impairment and Disability(POID) activities works at the level of PHCs with PHC health workers.
  • Annual case detection rate, MB & Child proportion, 10 % disability rate indicates that the infection remains within the urban, rural communities and cases are yet to be diagnosed early.
  • It indicates that lot more is to be done in all aspects of Leprosy Control to reach the goal of Leprosy elimination stage.
  • By continuous patient education, self care training and follow up the PALs at home, 98% of PALs can lead normal life with their irreversible disabilities and attend to their day to day activities.
  • It is possible to link Prevention of Impairment and Disability(POID) activities with other support NGOs / Government organization to provide services to PALs to improve their quality of life and for them to live with dignity, and with the family / community, without stigma and discrimination.

State Leprosy Officer (SLO), Dr. Tarachand Naidu visit to Prevention of Impairment and Disability(POID) Project:

The SLO of Andhra Pradesh visited both the project sites and interacted with the patients as well as the PHC staff involved in the National Leprosy Eradication Programme(NLEP) work. Based on the observations, he was quite encouraged to implement this project in other districts as well.

Based on his observations during the visit to Prevention of Impairment and Disability(POID) project, in one of the District Leprosy Officers (DLO) review meetings held in Hyderabad, he appraised all the DLOs about the achievements and expressed his willingness to scale up the project in the other high endemic districts like Anantapur, Vizianagram etc. He also requested all the DLOs to develop line listing of all the cases in their respective districts which would form the basis of the annual action plan for the forthcoming years.

Prevention of Impairment and Disability(POID) End Evaluation:

As per the Project proposal, there were 2 internal evaluations by Dr. Krishnan (India) and Ms. Valerie Simonet (Switzerland) at the end of 1st and 2nd year. The final / end evaluation was executed by an independent team comprising Mr. Chetan Pillay and Mr. Kingsley Stanley in Dec. 2013.

Strengths of Prevention of Impairment and Disability(POID) Project:

The field level practical demonstration of simple actions and procedures to persons affected by leprosy has helped to prevent and reduce the effect of disabilities and deformities as perceived by them and that has improved the compliance.

Moreover this Prevention of Impairment and Disability(POID) project has helped to sensitize and train the PHC staff including ASHAs to integrate leprosy control activities with other health services at the local level.

The interactions and advocacy functions have strengthened the collaboration with other stakeholders, particularly from the social sector of the government (DRDA) and created great demand for integrated rehabilitation services for socio-economic mobilization and equal opportunities for people affected by leprosy.

Additionally, this Prevention of Impairment and Disability(POID) project has also improved the quality of services and ensured the availability of adequate MDT at the PHCs for all new leprosy cases as a matter of ‘right to health’.

One of the major strength of this Prevention of Impairment and Disability(POID) project is the dedicated project team who is technically well versed with the management of leprosy as well as in implementing the project activities and the availability of hospital based leprosy care that provide comprehensive leprosy services and support the referrals from the PHCs.

Lessons learnt and recommendations:

The project needs to strongly advocate increased participation of the health personnel at the General health systems – PHC & CHCs in delivering Prevention of Impairment and Disability(POID) services as well as encourage active involvement of ASHAs in promoting home based care.

It may be argued that the ASHAs are not paid ‘incentives’ for delivering additional health services and therefore the project should consider drawing support from the available local funds available with Village Health & Sanitation Committee as well as Rogi Kalyan Samithis at village level.

The trainings conducted for various categories of PHC and National Leprosy Eradication Programme(NLEP) personnel in the districts need to be task specific and adopt participatory methodology.

The assessment of indicators show that the shortfalls are also a result of the fact that the FAIRMED does not set valid and measurable targets to monitor the 5 project measures implemented under this Prevention of Impairment and Disability(POID) project in these districts.

Although specific actions to be undertaken by different stakeholders to implement these project measures are clearly defined in the project matrix, it did not set concrete targets and timelines for action.

Moreover, the added value of this Prevention of Impairment and Disability(POID) project had a limited effect on the strategy of National Leprosy Eradication Programme(NLEP) at district and state as the process of the project is developed in a pilot mode.

Since inception, the Government perceived this Prevention of Impairment and Disability(POID) project as a NGO initiative. Therefore, FAIRMED in coordination with the NGO partners need to play an advocacy role to ensure that the state authorities initiate processes for institutional acceptance and responsiveness for this Prevention of Impairment and Disability(POID) programme at all levels as an integral part of the public health system.

Lack of community level action and enticing active participation of the community and groups including the person affected by leprosy in leprosy control activities, which needs to be addressed effectively with innovative measures in future. This can result in voluntary reporting of new leprosy cases early without any disabilities and deformities.

In order to achieve this, FAIRMED can strengthen the core team of the NGO Partners with further leadership and management skills and make them more consistent through Improved program monitoring for realizing the set objectives and goals of this project. There seems to be a general responsiveness of district health officials in both the districts, but if cooperation is not mandated from the state level officials, then it becomes a low priority and seems to be optional.

Astonishingly, it was learnt that there is no provision of funds for National Leprosy Eradication Programme(NLEP) activities in both the districts as per the District Health Action Plan (DHAP) under National Rural Health Mission (NRHM) in the year 2013-14. Hence the project team should engage in consultation with the district and state level health officials and evoke response and support to replicate this initiative in all other districts through government resources.

Showcasing Prevention of Impairment and Disability(POID) project:

Articles on Prevention of Impairment and Disability(POID) Project in “Health Action”:

The findings from the project were published in two issues of the “Health Action” journal. The first article covered the justification for the project, the project methodology and the achievements in the end of first year. It highlights the emphasis on the early case detection, the involvement of ASHAs, their capacity building and the innovation the project adopted by means of line-listing of all the cases in the project districts. It also captures the concept of “GOPOID”, the officer from PHC who has been trained for overseeing the project deliverables in the PHC area.

The second article emphasizes on the major achievements by end of 2nd year. It highlights the capacity building initiatives undertaken under the project for the Medical Officers (old & new), the ASHA coordinators, DPMOs and APMOs (vertical staff of NLEP). The value addition gained by placing the 2 mobile teams in each of the districts, the synergies drawn with the supporting agencies like District Rural Development Agency (DRDA) for facilititating the issue of disability certificates and issue of pension, District Blindness society for cataract operations and issue of spectacles and with NRHM for streamlining availability of Prednisolone and MCR footwear through PHCs. Finally the Backstopping exercises, which brought the quality issues from the field was considered as one of the important interventions.

Akshay Kumar Mishra, John Kurian George. New Approaches to address disability in Leprosy-Part-I. Health Action, Jan. 2012: 36.

Akshay Kumar Mishra, John Kurian George. New Approaches to address disability in Leprosy-Part-II. Health Action, Sep. 2013: 36.

Prevention of Impairment and Disability(POID) Presentation in 18th International Leprosy Congress at Brussels (Belgium) in Sep. 2013.

The findings from the Prevention of Impairment and Disability(POID) Project were presented as e-Poster in the conference and Dr. Akshay Kumar Mishra, National Technical Coordinator received the Young Scientist Diploma Award for the Best paper.

Newer Approach to Hospital services:

One of the core interventions of Swiss Emmaus India was to support the hospitals for specialized leprosy services. During his maiden visit to India, Mr. Thomas Gass, Program Head, FAIRMED, Switzerland, in Aug. 2013 proposed enhanced focus on outreach activities for effective prevention of disabilities along with the hospital services for disability management and rehabilitation. Based on the proposition, the Prevention of Impairment and Disability(POID) and hospital services were merged into a comprehensive Project (Comprehensive District Leprosy Control Project) and two separate proposals have been developed and submitted for approval.

This project has been designed having the hospital as the nodal point in the district. This will cover all strengthening of the primary health care services as well as bridging the gap of limited existence of tertiary care facilities in the district. The Primary health care services like early detection of new cases of leprosy, nerve function impairment cases and their prompt management at PHC level, management of ulcer cases and referral of the complicated ulcer cases and deformity cases for specialized treatment in the tertiary care facilities. This involves various measures to improve early case detection like

  • Involvement of ASHA workers in suspect referral and prompt payment of their incentives
  • Effectively execute the school health program including the private schools
  • Involvement of the private practitioners and the medical colleges
  • Promotion of active surveillance through door-to-door surveys
  • Annual examination of all the contacts (Contact survey) of all the new cases of leprosy.

Goal:“The quality of life of the leprosy affected persons is improved”.

Objectives:

  • To improve Prevention of Impairment and Disability(POID) services in the primary health care systemTo provide POID services at referral hospital level (OBA)
  • To strengthen Prevention of Impairment and Disability(POID) services at community level
  • To develop project management system for effective implementation of the project
  • To identify and undertake operation research in key areas of leprosy within the project to strengthen policy decisions.
  • Duration of the project: Jan 2014 – Dec. 2017.

Partners:

The project will be implemented through a tripartite collaboration between following partners. The collaboration will be formalized through signing of a MoU between all the partners specifying the roles and responsibilities of each partner in the project implementation.

  • Govt. of Andhra Pradesh
  • Rural India Self Development Trust in East Godavari and Gretnaltes in Guntur
  • FAIRMED / SEI

Target Group:

The project will cover all the Primary Health Centres (PHCs) in the district and all the known (old) and new leprosy patients will be provided the due services prescribed under the national program.

  • All the old Leprosy patients with disabilities – 3000-4500 patients.
  • New patients: @ 700 / year for 4 years – around 3000 patients.
  • Reaction / neuritis cases @ 15% - around 500 cases per year.

Project Management:

Placement of Divisional Coordinators: For effective management of the project, a full time Project Manager will be placed and he will be assisted by 5 Divisional Coordinators (responsible for 20-25 PHCs). The Divisional Coordinators will be part of the NGO staff and will be provided mobility support to cover their area of jurisdiction and discharge their duties.

Steering committee: There will be two steering committees one at State level and the other at district level to provide strategic and programmatic guidance to the project. The committees will meet every quarter to review the performance and make joint monitoring visits to assess the field realties.

Tablet based Linelisting using GPS: A android tablet based software will be developed to generate the linelist of all the patients in the PHC jurisdiction and this will be linked to the Hospital Information System (HIS) to provide the hospital as well as the field level data. The patients will be monitored for the development of new disability and progress of the existing disability following the specific interventions.

Backstopping: A Leprosy expert will be identified as the “Backstopper” to make visits to the project area atleast 3 times in a year to provide technical input and feedback about the project performance. The project will undergo internal annual reviews and the end of each year and the end evaluation will be done at the end of the project.

These two project proposals one each for East Godavari and Guntur have been developed and submitted to FAIRMED Headquarter for institutional funding.

To this effect, a MoU has been signed between the Andhra Pradesh state Govt., the local partners and Swiss Emmaus India clearly specifying the role of each stakeholder.

Urban Health Project:

Bainganwadi is home to Mumbai’s largest and oldest garbage dumping site. The slum dwellers face many challenges in terms of health, hygiene, water and sanitation. Lack of various public amenities / facilities related to education, health, and poor socioeconomic condition of the population complicates the situation even further. Considering the limitations and the challenges, SEI launched the Bainganwadi Slum Project in collaboration with three other local partners LSS, Mumbai, TISS and Health administration of Mumbai city with the overall objectives of improving the health and economic condition of its residents. It was envisaged to achieve the objectives through strengthening the self organization and empowerment by formation of Self Help Groups in the community. The project was implemented for three years, i.e. April 2009-Mar 2012. But at the end of 2012, considering the request of the implementing agency one year of extension was given till end of 2013.

Improved access to primary health care: The clinic run by LSS was huge success among the local residents. The Govt. run health posts would operate during the day time and the services are hardly utilized due to lack of availability of staff / medical officer / drugs etc. These challenges were met by the LSS run clinic and it also provided services in the evenings. The evening timing of the clinics helped the population so much that the attendees increased from 70 / month in the beginning to 315/ month at the end of the 3rd year. The general clinic also provided facility for running weekly skin clinic for treatment of skin ailments and screening - cum - referral of the Leprosy cases. The KAP study conducted during the project period for the General Medical Practitioners and the private health service providers threw some light about the gaps in their knowledge and prevailing practices. Subsequently through different sensitization workshops it was attempted to bridge the gaps in the existing awareness levels and practice towards the prevailing health problems in the community.

Access to TB diagnostic and treatment services: During these 4 years, 5 DOTS centres, 2 sputum collection centres and 1 Designated Microscopy Centre were made functional in the slum area. The infrastructures related to TB diagnosis and treatment established under the project could achieve 83% success rate in the TB treatment by providing facilities like sputum collection, diagnosis and treatment closest to the door step of the inhabitants of the Bainganwadi slum.

Access to Leprosy services: The Prevention of Impairment and Disability(POID) clinic / camps provided facilities for ulcer management and self care training to the old PALS.

Under 5 children care: The project also collaborated with the local Balwadi centre (An Unit run by Voluntary Organizations supported through Govt. of India to provide care for under 5 year children) for ensuring 100% of coverage of the under 5 children for immunization, growth monitoring and nutritional supplementation.

Self help group formation: As part of the project, total 12 self help groups were formed involving 168 members from the community. They were provided trainings on various income generation activities, managing a petty business, review of the achievements of the groups through monthly meetings etc. The group members were helpful in conducting various activities for their own population by spreading awareness about the prevailing health issues and assisted the functioning of the General clinic and DOTS (Directly Observed Treatment using Short course for TB) centres.

Overall the project could demonstrate significant success in terms of improving the health services in the community, health and sanitation condition of the population and enhancing the socio-economic condition of the population.

Needs Assessment of LSS and Mumbai Slums:

As by the end of 2013, the Bainganwadi project is completed for holistic development of the Slums especially the 3 health post areas covering 2.5 lakhs of population implemented by LSS. Considering the value addition created through LSS interventions and the potential needs in the slums areas, it was proposed to explore the possibilities of extending the collaboration in a different form. In this regard it was recommended to undertake a Needs Assessment exercise for the entire population of slums covered by LSS, which approximately covers 25 Lakhs from 3 wards of Mumbai. An external consultant was offered this assignment and the summary of the findings and recommendations is as follows:

  • In the absence of sustained new case identification, chances are that many cases are going undetected and amongst those detected 44% are MB cases (average of three wards), with good number of children being detected with leprosy.
  • Majority of government staff and frontline workers in the Urban Health Posts are not trained on leprosy and leprosy seems not to be a major responsibility for them.
  • Need stronger advocacy with government especially at MOH level for better institutional integration into mainstream health care system.
  • LSS has experienced and qualified staff to provide quality health care services to leprosy, but is understaffed.
  • LSS key staff seems comfortable in providing services but are not too comfortable in data management, documentation, and facilitating other non health needs of LAP like SHG formation, livelihoods, etc.
  • Need support in implementing sustainable and outcome based programming.
  • LSS need more hands to increase their coverage in identification and providing care and support services to patients.
  • Profiling of adolescent and young adult cases is to be taken up for planning and initiating vocational training options and better livelihood.
  • The District Health authorities concerned to Leprosy were proactive and supportive. So a sincere and professional approach is to be made to the existing issues with appropriate utilization of available resources from Govt. and bridging the gaps
  • An attempt to make the MOH of respective wards and the ADHS a responsible stakeholder can be made for better integration and outcomes of the future program budgetary support for training of HP staff, regular official communication through these offices to their respective HP staff on leprosy related activities, etc.
  • From the day one of implementation the project should have a clear laid out exit/ transition plan. Like earmarking the last year or additional one year with phase wise exit or transition of the project activities into existing health infrastructure and systems.

Technical assistance to National Leprosy Eradication Program of Low endemic states Haryana:

The state of Haryana is considered as low endemic states in the country and the Annual New Case Detection Rate (ANCDR) was 2.13/ 1 Lakh population and Prevalence rate (PR) of 0.26/10,000 population (2012-13 Annual report). The ANCDR as well as the PR has been showing a consistently increasing trend since last 3 years. Out of 21 districts, 2 districts are considered high endemic (Panipat as well as Faridabad). As part of providing technical support to the state National Leprosy Eradication Programme(NLEP) program, 9 districts were visited and around 50 cases under treatment were validated. Among them around 50% cases were found to be having visible deformity and with reaction / neuritis. The state had no designated functional Reconstructive surgery centre. So with the help of another ILEP hospital run by DFIT in Delhi, screening camps were conducted to identify patients eligible for reconstructive surgery in Panipat and Faridabad. The needs assessment for the program in the state was done and based on the Needs Assessment findings the Annual Program Implementation Plan for 2014 was developed. One orientation cum review meeting of the all the Paramedical Workers (PMW) of the state was organized at Panchkula and the PMWs were oriented on the latest National Leprosy Eradication Programme(NLEP) guidelines as well as the Nerve Function assessment. The concept of Linelist was introduced to the PMWs and the Linelist of all the existing patients (new as well as old) patients is being generated for the entire state. One joint monitoring visit comprising the Assistant Director General (ADG) of the Central Leprosy Division (Dr. A. K. Puri) and the National Leprosy Eradication Programme(NLEP) consultant (ILEP representative) was carried out in Panipat as well as Sonepat districts. The observations from the visit were shared with the Director of Health Services for appropriate action to strengthen the program in the state. A review meeting of the District Leprosy Officers and a comprehensive training of the PMWs has been planned.

Following the success of the Haryana model of providing technical support and based on the request of the Central Leprosy Division, Govt. of India, Swiss Emmaus India agreed to extend the similar support to the neighboring states / UT like Chandigarh, Punjab and Himachal Pradesh.

Chandigarh: The introductory visit to the UT of Chandigarh was done in Dec. 2013 and a preliminary assessment of the situation of National Leprosy Eradication Programme(NLEP) was done.

As part of the assignment, the National Leprosy Eradication Programme(NLEP) Consultant attended one National review meeting of the National Leprosy Eradication Programme(NLEP) Consultants organized by Central Leprosy Division to review the performance of the consultants and address the concerning issues held at New Delhi.

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