LEPRA Society
Strategy
April 2014-March 2016
Final
Contents
Sl.No.
Description
Abbreviations
1
LEPRA Society Introduction
2
Strategy Development Process
2.1 Context of current strategy
2.2 Relevance to LEPRA UK Strategy
3
Vision
4
Mission
5
Values
6
Strategy Principles
7
Strategic Aims
Strategic Aim-1 : To address medical and social issues due to leprosy
and diseases linked with poverty, discrimination and disability
Objectives
Indicators
Strategic Aim-2 : To partner with government, non-government
organisations and civil society to increase access and availability of
health care
Objectives
Indicators
Strategic Aim-3: To enhance the quality of health care by undertaking
research to improve knowledge and developing and disseminating
standards of best practice
Objectives
Indicators
Strategic Aim-4: To enhance organisational effectiveness and
demonstrate social responsibility.
Objectives
Indicators
Annexures
1
LEPRA Society Brief Strategy 2008-13
2
Review of LEPRA Society strategy 2008-13
3
SWOT Summary
4
Internal Consultations Summary
5
External Consultations Summary
6
Evaluation of Prioritization of organisational strategic priorities
7
LEPRA UK Strategy 2007-10
8
LEPRA UK Strategy 2011-15
9
Shared vision and aims - LEPRA UK and LEPRA Society strategies
10
References
Page No.
i and ii
1
2
3
6
8
8
8
8
9-11
9
9
9
9
9
10
10
10
10
11
11
11
13
15
20
22
23
25
32
40
45
48
Abbreviations
AIDS
ANCDR
ART
ASCI
BPHRC
CBO
CD4
CLD
CSIR
CSR
CTD
DPMR
DSIR
ELISA
ENL
HIV
HR
ICCM
ICMR
ILEP
INGO
IT
KHPT
LF
MC
MDR TB
MDT
MIS
MoH
MoU
NACO
NCD
NGOs
NLEP
NRHM
NTD
NTDRC
NVBDCP
Acquired Immuno Deficiency Syndrome
Annual New Case Detection Rate
Anti-Retroviral Therapy
Administrative Staff College of India
Blue Peter Public Health and Research Centre
Community Based Organization
Cluster of Differentiation 4
Central Leprosy Division
Council of Scientific and Industrial Research
Corporate Social Responsibility
Central Tuberculosis Division
Disability Prevention and Medical Rehabilitation
Department of Scientific & Industrial Research
Enzyme-Linked Immunosorbent Assay
Erythema Nodosum Leprosum
Human Immune Deficiency Virus
Human Resources
India Country Coordinating Mechanism
Indian Council of Medical Research
International Federation of Anti-Leprosy Associations
International Non-Government Organisation
Information Technology
Karnataka Health Promotion Trust
Lymphatic Filariasis
Management Committee
Multi Drug Resistant Tuberculosis
Multi Drug Therapy
Management Information System
Ministry of Health
Memorandum of Understanding
National AIDS Control Organisation
Non Communicable Diseases
Non Government Organisations
National Leprosy Eradication Programme
National Rural Health Mission
Neglected Tropical Diseases
Neglected Tropical Diseases Resource Centre
National Vector Borne Diseases Control Programme
i
PCR
PoD
RCS
RNTCP
SACS
SIRO
SoP
SRS
SWOT
TB
TRU
UoM
USIAD
VBD
VHSC
WHO
XDR
Polymerase Chain Reaction
Prevention of Disabilities
Reconstructive Surgery
Revised National Tuberculosis Control Programme
State AIDS Control Society
Scientific & Industrial Research Organisation
Standard Operating Procedure
Strengthening Referral System
Strengths, Weaknesses, Opportunities, Threats
Tuberculosis
Technical Resource Unit
University of Manitoba
United States Agency for International Development
Vector Borne Disease
Village Health Sanitation Committee
World Health Organisation
Extensively Drug-Resistant Tuberculosis
ii
LEPRA Society Strategy – April 2014-March 2016
1. LEPRA Society
LEPRA Society with sole purpose of extending multidrug therapy (MDT) to people affected by
leprosy, started as a medical charity in 1989, and has treated more than 5,00,000 patients. The
modus operandi, was multi-pronged; working with government departments of National leprosy
eradication programme (NLEP) at state and district levels, non-government organisations
(NGO) and directly serving people living in remote, inaccessible areas. This gave the society a
unique position of bridging the people affected on one hand and the mainstream service
delivery points on the other. The society later recognised the unmet need of people affected by
deformities due to leprosy and expanded deformity care services including reconstructive
surgery (RCS) and socio-economic rehabilitation making the activities more comprehensive.
LEPRA Society’s foray into Tuberculosis (TB) control came from its strengths like ensuring
adherence to more than 90% of its clientele, ability to address stigma deeply associated with
leprosy, and expertise in laboratory technology. The society resolved in mid-nineties to expand
its services to TB, human immune deficiency virus infection (HIV), other communicable
diseases like malaria and disabling conditions like blindness after strategically reviewing
organisational ability to diversify. In its growth continuum the organisation has moved from
direct service delivery to working in partnership with other civil society organisations including
people’s forums and networks, creating conditions for empowerment and sustainability.
Innovations, developing health care models following diligent and meticulous operational and
basic science experiments particularly under the umbrella of Blue Peter public health and
research centre (BPHRC) gave the society a recognition of being ‘research oriented
organisation’. The research carried out in the organisation contributed to many good practices in
health management, which have been replicated in mainstream health administration.
Over these years the organisation has served 258.84 million people spread across eight states
namely Andhra Pradesh, Odisha, Bihar, Madhya Pradesh, Jharkhand, Assam, Delhi and
Sikkim. Reaching the un-reached and focusing marginalised, deprived, women, children, slum
population, migrants and people requiring special needs has always remained the priority of the
organisation. LEPRA Society was entirely dependent on funds from LEPRA UK for nearly ten
years. This support has, nevertheless, helped the organisation in consolidating its position and
generating further resources in its pursuit of growth and excellence. It has gradually raised
project funds from institutional donors and Government departments. The society, still, is
dependant, to meet the costs incurred towards core and ancillary management functions. The
current LEPRA Society strategy is enclosed as Annexure -1.
1
With a modest budget of INR 20 Crores, a staff strength of 370 the society stands with
recognition as an effective organisation in the areas of communicable disease control
programmes and medical research. It evolved into a socially conscious health and development
organisation, with medical service, technical assistance, research and empowerment of people
affected as key strategic functions. The board of LEPRA Society through its management
committee provides good governance and ensures compliance to all statutory regulations. In
order to remain relevant and at the same time effective the organisation undertakes a number
organisational development exercises and the current strategy is one of them.
2. Strategy Development Process
The Management Committee (MC) in its 55th meeting commissioned a team of staff members
to discuss strategy to choose the most appropriate course of action for the realization of
organizational goals and objectives with reference to the current health status and conditions
influencing the development in the areas covered by the society for the period covering April
2014 to March 2016. Ms. Meena Gupta, Chairman of LEPRA Society also constituted an
oversight committee with Dr. V. Rukmini Rao and Mr. S. Ramanathan, as members to oversee
the strategy development process.
The strategic development process
A brief desk review of LEPRA Society strategy 2008-2013 was carried out to understand the
progress of activities in relation to the strategy was carried out and the findings are enclosed as
Annexure -2. A series of consultations with the staff, community and beneficiaries internally and
government officials, representatives from academic and research institutions and donor
agencies were included as part of the strategy review process. The information from the
2
consultations were analysed and used for further discussions in formulating the strategic aims
and objectives. The details are presented in Annexures 3,4,5, and 6. The present LEPRA
Society strategy was reviewed with reference to its performance over the past 4 years under
different aims and objectives and its position in relation to LEPRA UK strategy of the same
period.
The review was carried out in consultation with members of the Oversight committee on a
regular basis. In November 2013, the strategy will be discussed with members of Executive
Committee of LEPRA UK for inputs and suggestions. The Strategy will be further finalised in
consultation with members of the management committee of LEPRA Society in India and later
ratified by General body of LEPRA Society.
2.1. Context of Current Strategy
The strategic position of LEPRA Society is discussed in relation to the data on relevant disease
control programmes in India, Millennium Development Goals (MDGs), reports from United
nations(UN) and strategies of international aid agencies with a view to contextualise the
strategy review. The review was also done to align with vision, mission and strategic aims of
LEPRA UK (2011-2015), 12th Five year plan of Government of India and availability of funds to
the society. This analysis was taken up to ensure strategic aims and objectives of LEPRA
Society would be in line with and relevant to the current context.
The following three MDGs have cross cutting relevance to LEPRA Society and especially,
1) MDG-1 : End Extreme Poverty
2) MDG-4 : Ensure healthy lives and
3) MDG-8: Create jobs, sustainable livelihoods and equitable Growth.
India leads the world in the number of total DALYs for all causes, and has a DALY rate of
43,000 per 100,000, which is the highest in the world. In the coming five years, the priorities of
the national health programmes are universal access, prevention of new infections, integration
between disease control and other programmes, research and evidence based innovations,
coordination with social sector and public private partnerships. The other operational areas,
which can be considered on availability of funds are co-morbidity management, comprehensive
health care services,
India is included as a middle income country by Global Fund for HIV/AIDS. Tuberculosis and
Malaria. International Federation for Anti leprosy Association (ILEP) in partnership with
International leprosy association (ILA) enlisted India as high income group of countries for
leprosy. Funding to India has been downsized or suspended or stopped by bilateral agencies.
Corporate social responsibility has been more streamlined through a legislation ensuring a
certain amount of funds to social and development interventions.
3
Leprosy: Global statistics indicate that189,018 leprosy cases were on multidrug therapy (MDT)
in 115 countries. 232,857 new cases were reported during the year 2012, in fact 6231 more
than in 2011. Though India reached the goal of leprosy elimination in 2005, leprosy still poses
as a problem at national, state and district levels. India contributes to 58% of global disease
burden. and the following facts substantiate the high disease burden in the country.
every five minutes one new leprosy case is detected;
every 10th patient is a child.
LEPRA Society covers leprosy programme in one form or the other in 116 in `6 states of the
country. Besides disease burden, unmet needs in disability care, technical capacity of the health
staff, and research agenda in leprosy steer the society towards leprosy free world.
Tuberculosis: India has the highest burden of Tuberculosis in the world with over two million
incident cases. . India reported 14,67,585 which were initiated on Directly observed Treatment
short course chemotherapy (DOTS) and 17,000 MDR TB cases on DOTS PLUS. Case
detection rate of New Smear Positive TB cases was recorded at 68% and treatment success
rate was shown as 88%. Universal access and enhancing coverage of MDR TB management
are considered as priorities in 12th five year plan.
HIV/AIDS: India has recorded an overall reduction of 57% in the annual new HIV infections
(among adult population) from 2.74 lakhs in 2000 to 1.16 lakhs in 2011. The six high prevalence
states of India account for 39% of the HIV cases, while Orissa, Bihar, West Bengal, Uttar
Pradesh, Rajasthan, Madhya Pradesh and Gujarat account for 41% of new infections. The goal
of National AIDS Control Project-IV [2013-17] in its new form as Department of AIDS Control, is
to accelerate the process of reversal and further strengthen the epidemic response in India
through a well-defined integration process over the next 5 years with reductions of new
infections by 60% (2007 Baseline of NACP III) and provision of comprehensive care, support
and treatment to all persons living with HIV/AIDS.
Blindness: India carries a significant proportion of the world’s blindness and visual impairment,
with nearly 6.7 million people blind. There are an estimated 12 million bilaterally blind persons in
India. The main causes of blindness are cataract [62.6%], refractive errors [19.70%] and
glaucoma [5.80%]. The National Blindness Control programme primarily focussing on reducing
the burden of avoidable blindness and focusing on reducing the prevalence of blindness and
develop infrastructure and Eye Care services delivery system during 12th Five Year Plan with
wider partnerships particularly with Non-Government organisations.
4
National Vector Borne Disease Control Programme (NVBDCP): For the 12th five year plan
period, the objective for Malaria control is to bring down annual incidence of malaria cases to
less than 1 per 1,000 population at national level by 2017 and Annual Parasite Index to < 1 per
1000 Population. The priorities are addressing the malaria problem in urban and tribal areas
and identify new partners and donors for implementation. Reaching the unreached populations
and advocating for following national policy among private health providers and retail pharmacy
outlets are also considered as priorities.
Lymphatic Filariasis: During 12th plan period, the objective of Elimination of Lymphatic
Filariasis will be
a) to progressively reduce and ultimately interrupt the transmission of lymphatic Filariasis
b) to augment the disability alleviation programme to reduce the sufferings of affected
persons through appropriate home based morbidity management and hydrocelectomy.
Identifying priority areas and designing locally contextualised programme in high endemic
districts of Bihar. Odisha, Andhra Pradesh and Jharkhand in an integrated approach is possible
option for NGOs and other partners.
Non Communicable diseases: Chronic non-communicable diseases (NCDs) have replaced
communicable diseases as the most common causes of morbidity and premature mortality
worldwide. The global economic impact of NCDs is enormous: by 2015, just two diseases
(cardiovascular diseases and diabetes) are expected to reduce global GDP by 5%. Projection
estimates show that the number of people with diabetes in India is 40.9 million and is expected
to rise to 69.9 million by 2025.
The following table shows National Health Goals from 12th five year plan:
Disease
Tuberculosis
Leprosy
Malaria
Filariasis
Kala-azar
HIV/AIDS
12th Plan Goal
Reduce annual incidence and mortality by half
Reduce prevalence to < 1/10,000 pop. And incidence to zero in all districts,
Annual Malaria Incidence of < 1/1000
<1% microfilaria prevalence in all districts
<1% microfilaria prevalence in all districts
Reduce new infections to zero and provide comprehensive care and
support to all persons living with HIV/AIDS and treatment services for all
those who require it.
5
Disease
Blindness
Diabetes
12th Plan Goal
to modify pattern of assistance to effectively reduce prevalence of
blindness and develop infrastructure and Eye Care services delivery
system; to perform 350 lakh Cataract operations and about 50 lakh school
children with refractive error will be provided free spectacles
Prevalence of diabetes mellitus among persons aged 25+ to 3% relative risk
Early detection and management, reduction in complications
2.2. Relevance to LEPRA UK Strategy
The discussions were held to discuss commonalities in LEPRA UK and LEPRA India strategies.
LEPRA UK strategies covering 2007-2010 and 2011–2015 are enclosed as Annexures 7 and 8
respectively. The findings of analysis indicated similarities between the two strategies and are
tabulated in Annexure 9 for reference. General comments arising out of discussions informed
that the strategy consultation process was a bottom up approach when LEPRA UK strategy was
finalised for the period 2007-2010; where the initial consultations were carried out in India and
other country programmes to start with, which formed the base for further discussions and
consultation in UK to come out with a new strategy. The resultant LEPRA UK strategy was used
as a key reference document by LEPRA India for defining country strategy for the period 20082013. Similar procedure would be more appropriate for future years also.
6
Vision
Mission
Values
Strategic principles
Strategic aims
7
3. Vision: Equitable access to health and improved wellbeing of marginalized communities.
4. Mission: Restore health, hope and dignity to people affected by leprosy and other diseases
linked to poverty, discrimination and disability.
Impact indicators
Health
• Health seeking behaviour among individuals and communities
• Morbidity and mortality due to disease
Economic
• Amount of expenditure on healthcare per month
• Average income of beneficiary household
Social
• Quality of life of individuals and communities
• Lepra’s contribution to sustainable change
5. Values:
☯
☯
☯
☯
Engaging Communities: Work with marginalized communities to enable equality of
opportunities and dignity.
Accountability: Promote transparency, accountability and integrity.
Learning organisation: Encourage new, innovative, and cost effective solutions,
learning from experiences to serve the needs of the communities.
Quality: Ensure quality of services is uniformly high.
6. Strategic Principles:
LEPRA Society
• will plan and implement programmes/services:
o complementing and facilitating the strategy of LEPRA UK
o in alignment with the national policies and programmes
• will work in areas:
o with high prevalence of leprosy and other diseases linked with poverty, discrimination
and disability.
o which are remote, inaccessible, have concentrations of tribal people and rural and
urban poor, and in areas where programme implementation needs strengthening
• will advocate for reduction of stigma and discrimination against people affected.
• will continue to promote ‘barrier free access’ in all offices and greater involvement of people
affected in programmes
• will enable greater role and participation of women in the organisation and programmes
8
•
•
•
•
•
•
will continue to question itself and learn through research, experience, evaluations and
organisational review process to improve organisational effectiveness
believes in partnership with various stakeholders and will leverage partnerships within its
mandate .
will initiate interventions with a clearly defined exit strategy and encourage sustainability.
will ensure accountability through the General Body and its Management Committee.
will coordinate with LEPRA UK on financial support to
o build up operational reserve to respond to identified needs to realise potential impact.
o ensure stable funding for operations
will work in accordance with the statutory regulations under the Societies Registration Act.
7. Strategic Aims:
Strategic Aim-1: To address medical and social issues due to leprosy and diseases
linked with poverty, discrimination and disability
Objectives
1.1.
1.2.
1.3.
1.4.
Deliver quality services; address the unmet needs of people affected by leprosy and
other diseases
Provide technical support at national, state and district level in implementation of plans
covering endemic and low endemic prioritized districts with evidence based
programming.
Take the lead in strengthening chain of referral services with innovative approaches.
Adopt new technology to improve reach and quality of services to the affected
Key Indicators
•
•
•
•
•
•
Increased and sustained access to essential services to persons affected by leprosy
Increased number of successfully treated tuberculosis patients
Increased access to people living with HIV and key populations for services
Reducing the prevalence of current blindness in project intervention sites and eliminate
avoidable blindness by treating 80% of these conditions
Demonstrate scalable integrated models of care for disabilities due to leprosy and lymphatic
filariasis and other neglected tropical diseases
50% reduction of annual parasite incidence in high endemic pockets malaria (> 10 AP) of
intervention sites from the current
9
Strategic Aim 2 To partner with government, non-government organisations and civil
society to increase access and availability of health care
Objectives
2.1.
2.2.
2.3.
2.4.
Working in partnership with government and other stakeholders and facilitating the
provision of good quality healthcare.
Engage forums, networks and groups of people affected in addressing stigma and
discrimination.
Develop the capacity of local communities in raising awareness regarding access to, and
demand for, services
Enhance access to information for the people affected
Key Indicators
Number of projects developed in partnerships including research
Evidence of policy change or development of organisational processes to support working
together
Improved and increased numbers of laws and policies are in place and implemented which
support marginalized people to access rights, opportunities and services
Increased joint advocacy and form strong and effective coalitions / networks in medical
services, social entitlements and Human rights
•
•
•
•
Strategic Aim 3: To enhance the quality of health care by undertaking research
to improve knowledge and developing and disseminating standards of best practice
Objectives
3.1.
3.2.
3.3.
3.4.
Setting standards/benchmarks, strategies, models of quality care
Conduct research, develop cost-effective tools/models for early diagnosis, management
of complications, for clinical and social applicability and detection of drug resistance
To design and participate in surveillance systems of diseases with stigma and poverty.
Assess and share impact of different activities, interventions and programmes
Key indicators
•
Number of new and improved interventions and implementation strategies whose
effectiveness has been determined and the evidence made available to appropriate
institutions for policy decisions
10
New knowledge, intervention tools and strategies developed and validated to meet priority
needs in prevention and control of HIV/AIDS ,tuberculosis and malaria
Number of new standards or updated systematic reviews on best practices, policies and
standards of care
Number of publications (in peer reviewed journals; advocacy communications and training
materials)
•
•
•
Strategic Aim 4: To enhance organisational effectiveness and demonstrate
social responsibility.
Objectives:
4.1.
4.2.
4.3.
4.4.
4.5.
Improve governance practices - accountability and transparency in the organisation.
Build and sustain expertise at various levels in the organisation and promote positive
work culture
Strengthen financial management and fundraising initiatives
Ensure greater role and participation of women in organisational activities
Reduce the impact of our work on the environment
Key indicators
•
•
•
•
•
•
•
Performance results of capacity assessments by other donors/agencies
Sources of funding by category(including corporates) and five largest donors and monetary
value of their contribution.
Sustain all statutory requirements
Staff turnover
Enhanced and improved opportunities for women staff across the Organisation (20% to
40%)
Amount or number of cost saving measures adopted in Organisation resulting cost saving
up to 5-10% in administration.
Ensure projects will use and quality of databases of core indicators to capture impact of our
work
11
Annexures
Annexure-1
12
LEPRA Society Brief Strategy 2008-13
ORGANISATION
Time Frame
LEPRA SOCIETY
2008-2013
Geographical
Coverage
Persons working
with
Vision
Andhra Pradesh, Orissa, Bihar, Madhya Pradesh, Assam, Jharkand
Mission
Persons living with HIV, Tuberculosis, Leprosy, Blindness, Malaria and
Lymphatic Filariasis
Equitable Access to Health and an improved life for India’s poor and
Marginalised Communities
LEPRA Society; Health in Action is a health and development organisation
working to restore Health, Hope and Dignity to people affected by leprosy,
tuberculosis, Malaria, HIV/AIDS, blindness and other health conditions
exacerbated by stigma and social discrimination
Strategic Directions: Basing on its strong partnership, LEPRA Society had adopted LEPRA: Health in
Action, strategy document to work and complement and facilitate each other’s strategy at any point of
time.
Aim 1: To increase access and availability of health care and community participation
1.1 Strengthen the capacity of government and other stakeholders to provide healthcare
1.2 Continue the decentralization process, developing the capacity of local communities
1.3 Ensure the sustainability of the organisation by increasing the available resources
1.4 Provide direct services where appropriate
Aim 2: To enhance the quality of health care by improving organisational capacities and by
developing and disseminating standards of best practice
2.1 Continue the process of setting clear standards for our work and monitor on an ongoing basis
2.2 Develop strategies and models to support quality services
2.3 Facilitate and strengthen government and other stakeholders in providing good quality health
care
Aim 3: Raise the profile of diseases of stigma and poverty and address the effects of poverty,
discrimination and stigma.
3.1 Improve the need and modes of communication in order to raise our visibility, influence health
care policies and practices
3.2 Give a voice to those who are marginalised by the diseases of poverty and stigma, act as
advocate
13
Aim 4: Undertake research to improve knowledge and develop strategies to support health care
of infectious and allied diseases of importance in collaboration with
academics/institutions/ disease control programmes.
4.1 Develop cost-effective models for diagnosis and treatment
4.2
4.3
4.4
Aim 5:
Strengthen the capacities of the Lab Technicians across all LEPRA Society projects
Undertake research activities on communicable diseases under strategic priorities
Collaborate with government and academic institutions to improve efficiency
To further reduce the leprosy load (impact, incidence) and support leprosy affected
persons.
5.1 Develop a true picture of the incidence of leprosy
5.2 To provide direct quality service to those diagnosed with leprosy where necessary
5.3 To work towards mental, physical, economic and social rehabilitation of people affected by
leprosy
5.4 To maintain optimal trained and skilled workforce in the organisation
5.5 Conduct laboratory and field research in support of the aim
Aim 6: Build organisational capacity to improve effectiveness, credibility, sustainability through
resource mobilization
6.1 Increased stress on building our fund raising capacity
6.2 Consider innovative ways of sustaining our organisation
6.3 Improve internal communications
Aim 7 Demonstrate social responsibility
7.1
7.2
7.3
7.4
Encourage a positive working culture, where staff feel valued and respected
Ensure the safety and well being of our beneficiaries
Continue to build and improve the governance of LEPRA: Health in Action
Reduce the environmental impact of our work
14
Annexure-2
Review of LEPRA Society Strategy 2008-13
LEPRA Society’s performance during the last 4 years was reviewed and many
accomplishments and successes were found in line with the strategic aims and objectives of the
organisation. The Desk review was carried out by an External Student Volunteer1.
The Strategic Aims mainly focus on improving the operations of LEPRA India. Build
organisational capacity to improve effectiveness, credibility, sustainability through resource
mobilisation and with technical assistance. The following are the key achievements.
Aim 1 : To increase the access to health provision of health care by mobilising the
community resources
•
•
•
•
Establishment of Leprosy referral centres provided an opportunity to demonstrate
quality disability care services to the leprosy affected.
Partnership with State AIDs control societies reached the areas hard to reach for
HIV/STI/RTI related services through 6 Mobile Integrated Counselling Servicers.
Supported three CBOs to work towards accessing health services and reaching
more needy beneficiaries.
LEPRA Society has undertaken the challenging task of participating in concurrent
evaluation of National Rural Health Mission (NRHM), Andhra Pradesh commissioned
by Administrative Staff College of India (ASCI).
Aim 2: To enhance quality of health care by improving organisational capacities by
developing and disseminating standards of best practice
•
Partnering with State AIDs control society for Andhra Pradesh Counsellors Project
and working with USAID through UoM/KHPT/ Engender health/St. Johns Medical
College, Bangalore for Samastha Project gave us an opportunity to Work with
establishing model community care centres. Through Human Capacity and Systems
and Computerised Management Information System, Consolidate Community
Outreach & Quality Clinical Care System. Establishment of Foot care units for quality
foot care supply.
1
Ms. AnupamaPrahalad, who is studying at Center for Development of Corporate Citizenship, S
P Jain Institute of Management & Research, Mumbai.
15
Aim 3: Raise the profile of diseases of stigma and poverty and address effects of
poverty, discrimination and stigma
•
LEPRA Society has contributed for developing 12 five year plan for NLEP advocating
the present gaps in implementation and provided technical support in developing the
Dash board for all states of India. As part of HIV/AIDs LEPRA Contributed to reduce
stigma and discrimination through Nurse Mentors programme and Mainstreaming of
HIV/AIDs prevention programme. Apart from that, MEN’s intervention is another
innovative approach adopted in Krishna district.
Aim 4: Undertake Research to improve knowledge and develop strategies to support
health care of infectious and allied diseases of importance in collaboration with
academics/institutions/disease control programmes
•
•
•
•
Partnerships with ICMR, PATH, University of Texas, Colorado, Pittsburgh, NTR
University and Hyderabad Central University gave us an opportunity to carry out
research projects on Leprosy and HIV-TB and the microbiology lab was upgraded to
BSL 3 in early 2011 for carrying out the MDR / XDR TB work, TB/HIV.
The review and the in-depth study of the BPHRC by Dr. Neil French made a set of
recommendations to improve financial sustainability, increase the project base for
the centre and to recruit a director with community health background to lead both
public health and research function. Blue Peter Public Health and Research Centre
provided technical assistance to both public and private sector labs in establishing
TB culture and drug sensitivity testing facilities to detect drug resistant TB quickly.
32 Publications were published both International and National journals.
A collaborative research project on Lymphatic Filariasis titled “Molecular
epidemiology and host susceptibility of morbidity and co-morbidity of Bancroft Ian
filariasis in endemic states of India- a community based study” was initiated in
partnership with Berlin University.
Aim 5: To further reduce the leprosy load (impact and incidence) and support leprosy
affected persons
•
LEPRA India has played a key role in the leprosy programme plan and contributed to
develop a need based focused intervention to reduce leprosy burden. The
categorisation of district framework was helpful in identifying districts which need
special leprosy control interventions to improve the effectiveness of NLEP and
reaching the unreached in inaccessible areas. LEPRA India was entrusted the
responsibility of data collection on leprosy situation in urban areas. LEPRA Society
is effectively supporting the health administration for implementation of DPMR
16
activities and POD/POWD care services in the state through the TRU and SRS
project. Staff recruitment and retaining good performing staff remains a challenge in
the year.
Aim 6: Build organisational capacity to improve effectiveness, credibility, sustainability
through resource mobilisation
•
Through various advocacy and negotiations, the organisation gained the support
from the corporates, individuals, institutions who were part of various awareness
building activities by which the resources have been mobilised to meet the few
requirements of the beneficiaries. To improve further, there is a need to develop
strategic relationships with academic institutions, corporate offices, and work towards
establishing tie-ups with their CSR departments. Establish clear milestones in
achieving the required fund raising in a timeline for all the projects. LEPRA India
developed web based reporting system for NLEP. This was designed to help smooth
flow of data from peripheral health centres to Central Leprosy Division (CLD). The
system would enable Programme Managers at district, state and national levels in
making informed decisions basing on the data from the field.
Aim 7: Demonstrate Social Responsibility
•
The HR department is mainly working on the organisation to achieve its objectives by
recruitment of skilled staff and forming required policies. The social audit was
implemented successfully in the states of Orissa and Andhra Pradesh, thereby
bringing in transparency in the entire work culture.
Recognitions
•
•
•
•
•
•
•
•
LEPRA Society got accredited by credibility Alliance,
Introducing web based reporting system,
Empowering communities and Advocacy initiatives,
Social Audit,
Elected for ICCM membership under TB category, Association with WHO and
Recognitions from the government at district and state level are the key successes
during the strategic period.
The BPHRC accredited by the Central TB Division to conduct MDR Diagnosis.
The BPHRC recognised by Osmania University for PhD registration.
The BPHRC is recognised by the Department of Science and Technology,
Government of India as a Scientific and Industrial research organisation.
17
Gaps
•
•
•
Delay in release of grants with SACS and RNTCP created discomfort
The sudden funding gap in latter part of 2010 caused redundancies, demotivation of
the staff, low morale
Consistent Naxalites issue in Odisha, Koraput and other districts became a
challenge for staff safety and timely activity compliance
Recommendations
•
•
•
Continue to Develop Strategic partnership with academic institutions, corporate
offices and Social Media.
Develop mile stones for fund raising
Impact assessment strategies should be carried out to measure the impact at
community level
18
Progress of current Strategy of LEPRA Society in the last 5 years
Aims
Aim 1:
Description
To increase access and availability of health care and community participation
1.1 Strengthen the capacity of government and other stakeholders to provide healthcare
1.2 Continue the decentralization process, developing the capacity of local communities
1.3 Ensure the sustainability of the organisation by increasing the available resources
1.4 Provide direct services where appropriate
To enhance the quality of health care by improving organisational capacities and by developing and disseminating
standards of best practice
Aim 2:
2.1 Continue the process of setting clear standards for our work and monitor on an ongoing basis
2.2 Develop strategies and models to support quality services
2.3 Facilitate and strengthen government and other stakeholders in providing good quality health care
Raise the profile of diseases of stigma and poverty and address the effects of poverty, discrimination and stigma.
Aim 3:
Improve the need and modes of communication in order to raise our visibility, influence health care policies and
3.1 practices
3.2 Give a voice to those who are marginalised by the diseases of poverty and stigma, act as advocate
Undertake research to improve knowledge and develop strategies to support health care of infectious and allied
diseases of importance in collaboration with academics/institutions/ disease control programmes.
Aim 4:
4.1 Develop cost-effective models for diagnosis and treatment
4.2 Strengthen the capacities of the Lab Technicians across all LEPRA Society projects
4.3 Undertake research activities on communicable diseases under strategic priorities
4.4 Collaborate with government and academic institutions to improve efficiency
Aim 5:
To further reduce the leprosy load (impact, incidence) and support leprosy affected persons.
5.1 Develop a true picture of the incidence of leprosy
5.2 To provide direct quality service to those diagnosed with leprosy where necessary
5.3 To work towards mental, physical, economic ad social rehabilitation of people affected by leprosy
5.4 To maintain optimal trained and skilled workforce in the organisation
5.5 Conduct laboratory and field research in support of the aim
Build organisational capacity to improve effectiveness, credibility, sustainability through resource mobilization
Aim 6:
6.1 Increased stress on building our fund raising capacity
6.2 Consider innovative ways of sustaining our organisation
6.3 Improve internal communications
Aim 7
Demonstrate social responsibility
7.1 Encourage a positive working culture, where staff feel valued and respected
7.2 Ensure the safety and well being of our beneficiaries
7.3 Continue to build and improve the governance of LEPRA: Health in Action
7.4 Reduce the environmental impact of our work
All
All Aims score
Note:
The achievement has been scored on a 5 point scale starting from 0 (0 to 4).
Aim score is the mean score of its components.
No Achievement
25% Achievement
50% Achievement
75% Achievement
100% Achievement
19
3
2
3
2
3
3
4
3
3
3
3
3
3
3
3
3
4
3
3
3
3
3
3
2
1
2
3
3
3
3
4
3
3
Annexure-3
Internal
SWOT Summary
Strengths
Weaknesses
1) LEPRA brand image and reputation
2) Inspirational and effective Leadership
with strong governance
3) Good reputation of patient care and
clinical services addressing diseases of
stigma and discrimination
4) Partners with affected person groups
and Government / Donors / INGOs /
NGOs / CBOs
5) Recognition as a health and
development organisation by
Government, donors and communities
6) Wider geographical coverage catering to
the community needs in the
underprivileged, difficult to reach areas
and affected people
7) High level committed, motivated
professional staff
8) Documented HR, Finance,
Administration, IT policies and practices
9) Demonstrated expertise in clinical and
lab based research (BPHRC) linked with
field projects
10) Strong financial systems including
internal audit systems
11) Good Networking and liaisoning with
stakeholders
12) Recognitions by Alliance Accreditation,
Credibility Alliance, DSIR-SIRO, MoHGoI and Universities; Tax exemptions.
1) Skills in writing new initiatives/ project
proposals/ exit plans
2) Documentation and Sharing of best
practices
3) Career development, succession
plans and separation
4) Second line managers and staff turn
over
5) Use of MIS in decision making
6) Fund raising
7) Analysis of rich patient data pool in
the projects
8) Create corpus/reserve funds to meet
fund gaps and uncertainties
9) Lobby and advocacy initiatives
10) Attract young medical and leprosy
trained paramedical staff
11) Asset management and optimal use of
organisational infrastructure and
adapting/using new technologies.
12) Operational research and NTD/NCD
capacities
20
External
Opportunities
1) Establishing leprosy referral centres and
Strengthen RCS facilities
2) Increased scope for
partnerships/consortiums/collaborations
in new geographical areas
3) Scope for BPHRC to undertake
prospective studies along with LEPRA
Society projects
4) Availability of resources for NGO
collaborations under NRHM/WHO
5) Engage in advocacy work in
collaboration with state forums
6) Publish, present and disseminate
research findings/best practices
7) Partnerships under Corporate Social
Responsibility
8) Work in areas of NTD/NCD
9) Scope to work in urban and difficult to
reach areas
10) Use of clinical and field expertise in
research
11) Extending technical support to NGOs,
State and Central Government Health
departments in areas of leprosy, TB,
HIV/AIDS and IT & Data management.
12) Scope for organisation to promote
commercial foot wear and BPHRC lab
diagnostics
21
Threats/Challenges
1) Budgetary constraints/uncertainty
2) Change in donor priorities and policies
3) Sustainability of donor funded project
impact areas / research leads
4) Costs to mitigate the maintenance,
services and replacement of existing
equipments, vehicles and
infrastructure
5) Unethical attitude and expectations
from government officials
6) Delay in timely disbursements of the
grants by government/donors
7) Addressing natural calamities and civil
unrest
8) Inadequate resources to meet the
gratuity benefits of the staff
9) Staff poaching
10) Power cuts and increased electricity
costs
11) Cope with fast changing IT needs
12) Increasing expectations of stake
holders
Annexure 4
Internal Consultations Summary
As part of the development of the organizational strategy for the period April 2014 to March
2016, consultations with the Beneficiaries, Community Based Organizations, NGOs, Block and
District level medical doctors and with the internal staff were held and inputs were collected.
During the consultations many stake holders expressed that the organization has good
leadership, support the Government programmes, conducts IEC activities at the community and
unreached places, transparent in financial systems, support the organizations in strengthening
the systems and provides direct services at the community level. The key suggestions to
prioritize the issues are partnership with Peoples organization, expanding the geographical
area, improving the supervision, fund flow, reporting and documentation , continue working at
the community level, provide technical support to the partners, Malaria, Malnutrition, Gender
and discrimination, HIV/AIDs, water and sanitation , Child Health , working in tribal area, and
Legal support.
During the consultations respondents are also expressed to tract the impact of each intervention
by documenting the process and successes, providing regular technical support through which
the improved quality of services, effective monitoring and the reduced prevalence.
Some important Feedback from different respondents
“To continue direct services at community level and prioritize Leprosy and HIV/AIDS and identify
exclusive point persons for each thematic area.” - Community Based
Organizations:
“LEPRA should provide nutrition supplementation to the patients and children,
medicines and also work on water and sanitation” - Beneficiaries:
“Very transparent and monitoring visits are supportive and useful”- NGOs:
“LEPRA should continue referral center and capacity building activities at community
and district level” - DLO
“Capacity building activities should continue on a regular basis to enrich our
knowledge” - RHCP
“LEPRA India trainings are very qualitative and conduct in local language with local
materials and continue the counseling services” - Positive Networks.
22
Annexure-5
External Consultations Summary
Environmental scanning is an important step in the strategic planning and as a part (component)
of the Environmental scanning; consultations were made with the Government officials,
Partners, forums of persons affected. Consultations were made at national level (Delhi/Chennai)
and at the state level (Andhra Pradesh, Bihar, Delhi, Madhya Pradesh, and Odisha). The
consultations included discussions with Government health authorities, partners and people
affected. A total of 48 consultations were made in May & June 2013.
The strategic issues are drawn from the “Strengths & Weaknesses of LEPRA India and
Opportunities it has from the external perspective.
At the national level and state level LEPRA India is seen as major partner to the health
programmes.
“LEPRA is powerful partners to NLEP. LEPRA has expertise in capacity building in
programme management” – Deputy Director General Leprosy, GOI.
“LEPRA has expertise in establishing referral system especially strengthening
reconstructive surgical facilities in GHC system” – State Leprosy Officer, Odisha.
“Experience in strengthening urban leprosy control programme” – State Leprosy Officer,
Delhi
“LEPRA has expertise in TB control and their support to RNTCP is tremendous” – State
Tuberculosis Officer, Andhra Pradesh.
“Some of LEPRA models has become best practices and replicated by govt. in other
areas – APSAC”.
“LEPRA has facilitate participation of National Forum of persons affected in NLEP” –
National Forum of persons affected.
“Second line leadership is not adequately developed at all levels” – One of the partners.
23
The issues to be considered while developing the strategic plan:
Leprosy
LEPRA should continue its core focus on leprosy
Strengthen Leprosy Control activities (including DPMR) in the district/states
where LEPRA is working at present
Strengthen urban leprosy programme
Strengthen Leprosy Control activities in low endemic states
Empower persons affected
TB
Strengthen TB control programme in difficult to reach area
Strengthen research activities - Cater to Category-C through accreditation of
Liquid culture (BPRC); Conduct Line Probe Assay; Blue Peters lab to become
center of excellence in HIV and further enhance TB work (MDR-TB), Zeno typing
HIV/AIDs Strengthen HIV/TB control programme in difficult to reach area
Vector
Strengthen Malaria control programme in difficult to reach area
Borne
Strengthen LF Control activities
Others
•
Involving in NCD (Diabetes, Hypertension etc. Life style diseases)
Expand work in control of NTD
The approaches suggested are working through partners and empower persons affected.
24
Annexure-6
Evaluation of Prioritization of organisational strategic priorities (Internal & External)
Factor
Need
Continue existing Referral centers and
Establish new Referral Centers
Facilitate in strengthening RCS facilities
Capacity Building of GHC staff and District hospitals in
Disability prevention/care
Develop training of trainers at state level
IEC in difficult to reach areas
Provision of protective foot wear
Develop Models of IEC in urban context
Develop patient tracking system
Capacity building of Medical College in leprosy
Develop effective surveillance system
Sustain technical expertise in leprosy by capacity
building – low endemic states
Empower persons affected to take up advocacy issues
Empower persons affected for involvement NLEP
planning and monitoring
Facilitate in developing LokDoots in leprosy colonies
Studies related post integration problems/issues
LEM in low endemic states/District
Role of environment in leprosy transmission
BPHRC to function as surveillance center for drug
resistance
Scientific evidences to influence the policy makers
Share best practices
Carry out studies (research) related to post elimination
(leprosy)
Take lead from previous studies and develop multi
centric studies.
X
X
X
X
X
X
X
X
X
X
Resources
Leprosy
X
X
X
X
X
Capacities
(strengths,
skills)
Opportunities
Visibility /
Impact
X
X
X
X
X
X
X
X
X
X
X
X
Aim 5
Aim 1,2,5
Aim 5
Aim 5
X
X
X
X
X
X
X
X
Aim
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
x
x
X
X
x
X
25
Remarks
Factor
Need
Resources
Take up research studies in leprosy and TB as priority.
(There are many other players who are doing HIV/AIDs
research)
Strengthen partnership with ILEP member
organizations
Develop partnership with NIE
Networking with Research organizations (ICMR etc.)
Develop linkages with private sector
Working with VWSSC, SHG with social action method
(focussing more on community involvement in
implementation, decision making etc.)
Stigma reduction
Advocacy and facilitating for social entitlements and
welfare schemes
Exclusive dedicated leprosy services
X
X
LEPRA can continue to work in the states in which they
are working at present
Consider to expand to neighbouring states especially
Gujarat (Surat area – where there is migration to AP,
Odisha and MP).
Support in Drug logistics
Facilitate in establishing linkages between DTC and
ICTC
Monitoring and Evaluation strategy to track the
performance progress , include Social Audit
Involvement in MDR TB and DOTs follow up
Expand Centre of excellence in MDR TB testing in
other locations.
Establish Treatment Units (TU-TB) especially tribal
areas
Work in urban slums and tribal/hilly areas of the
districts
Opportunities
Visibility /
Impact
X
Capacities
(strengths,
skills)
X
X
X
X
X
X
X
X
X
X
X
x
X
X
X
X
X
X
X
X
x
X
X
X
X
X
X
X
X
x
X
X
X
X
x
X
X
x
X
Tuberculosis
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
x
X
X
X
x
X
X
x
X
X
X
X
X
X
26
Remarks
Factor
Screen coal mine workers for silicosis (which is under
RNTCP)
IEC in urban slums and tribal/hilly areas
Facilitate training of ASHAs (block-wise) in TB and
provide referral slips and sputum cups.
Focus on private practitioners involvement
Cater to Category-C through accreditation of Liquid
culture (BPHRC)
Conduct LPA (Line Probe Assay) in the districts (to be
allotted) (BPHRC)
Global India: Best practices of LEPRA can be shared
outside India. India has potential to work with other
countries.
Partnership with World Vision by developing joint
monitoring system.
Partnerships with World Vision by involving in building
capacity of NGOs
Joint consultations with World Vision Health
Department
Nutritional support to pediatric TB patients
Continue present activity of Targeted Interventions
Take part in PPTCT (Prevention of Parent to Child
Transmission – HIV) interventions especially
community mobilization (in marginalised groups)
continue to address HIV+TB co-infection
Continue mobile ICTC vans
involve in monitoring & supervision of the AIDS control
programme along with govt. with their resources
LEPRA can provide Technical Support Unit at state
level (Bihar)
LEPRA can focus on the costal districts of AP
Need
Resources
Capacities
(strengths,
skills)
Opportunities
Visibility /
Impact
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
x
Strengthen
documentation
X
X
X
x
Device joint
monitoring system
with partner
organisation
X
X
X
X
x
x
x
x
X
X
X
X
X
X
X
x
X
X
X
X
X
X
X
X
x
X
X
X
x
x
X
X
X
X
X
X
X
X
X
X
X
X
X
HIV/AIDS
X
X
27
Remarks
Factor
Need
Resources
Food security Nutrition support for HIV/AIDS affected
persons
HIV/TB - where there is no doctor, difficult to reach
area should be focussed and more on sensitization
Address larger advocacy issues
To play an advocacy leadership role
Create awareness about HIV control in the areas
LEPRA is working for other disease
Build the capacity of NRHM in AIDS programme
planning, implementation and monitoring with LEPRA
resources
Study the mortality patterns HIV/TB co-infection
persons
X
Capacities
(strengths,
skills)
X
X
X
X
x
X
X
X
X
X
X
X
X
X
x
x
x
X
X
x
x
X
X
X
X
Blue Peter lab can be reference lab for HIV/AIDS and
be part of quality control. BPHRC should have
linkages with other reference labs and APSACS &
NACO
Research into linking social inequalities and health
outcomes. HIV/TB co-infection research
Blue Peter lab has opportunity to become center of
excellence in HIV and further enhance TB work (MDRTB), geno typing
Partnership with World Vision by developing joint
monitoring system.
Partnerships with World Vision by involving in building
capacity of NGOs
Joint consultations with World Vision Health
Department
Develop partnerships with Regional units of CHAI and
LEPRA regional units.
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
x
X
X
X
x
X
X
X
x
X
X
X
x
X
X
28
Opportunities
Visibility /
Impact
X
x
Remarks
Improve the
monitoring system
among LEPRA
projects
Factor
Explore the possibilities of utilizing NGO package in
NVBDCP.
Social Marketing of Bed nets
Running malaria clinics
Ensure radical treatment and drug compliance in 19
high risk districts of MP
Continue to work in LF. Focus on north Bihar districts.
Start a pilot project in 3 or 4 district which can be a
model for replication in other districts.
Need
Resources
Capacities
(strengths,
skills)
Vector Borne Diseases
X
X
X
X
X
Opportunities
Visibility /
Impact
X
x
X
X
x
X
X
x
Focus on NE states, Northern states and North west
states.
Malaria - where there is no doctor, difficult to reach
area should be focussed and more on sensitization.
Strengthen the control activities 9 costal district in AP
are endemic for LF
Work in 5 districts of MP which are endemic for LF
(Shivpuri, Umaria, Chhindwara, Tikamgarh)
X
X
X
x
X
X
X
x
X
X
X
x
X
X
X
x
Establish Low vision care centre in MP
At present working in two districts of Bihar. Expand to
the other districts
NIE (Blindness) – develop effective models in
prevention of blindness in rural and tribal population.
X
X
X
X
X
X
x
x
X
X
X
x
Involving in NCD (Diabetes, Hypertension etc. Life
style diseases)
Develop an integrated model of total health care
Expand work in control of NTD (Neglected Tropical
Diseases)
LEPRA to become “National health related
organization”
Enlarge and expand work geographically (Now limited
to few states only)
X
X
X
x
X
X
X
x
X
X
X
x
X
X
X
x
Blindness Control
General
29
Remarks
Continue and
expand LF work in
priority
districts/states
Factor
Involve in control of epidemics of Swine flu and
Chikungunya.
Involve Social marketing, adolescent health, and
school health. LEPRA can facilitate in creating a model
SHG
Address psychological problems on persons affected
by Leprosy, HIV/AIDS, and TB. (mental health
interventions)
Geriatric care - Establish geriatric programme
Cancer - establish Help desks and counselling centres
Hemophilic center in Bihar
Capacity building of CBO along with SERP (AP) in an
integrated approach (integrating into main agenda of
the training of SERP. The capacity building could be in
all communicable diseases.
Develop Community based Monitoring system (CBMS)
Focus on Human chain communication strategy –IEC
Empower people affected to the extent people affected
will be capable of dealing their own human rights and
advocacy issues without external funding agency
support
A designated unit could be established for proposal
writing.
Recruit young public health specialists
Develop second line leadership at all levels
Establish a base (presence) in the capital city (Delhi)
for effective functioning.
Decentralization for quick decision making.
NCD among people affected and children
Need
Resources
Capacities
(strengths,
skills)
Opportunities
Visibility /
Impact
X
X
X
x
X
X
X
x
Remarks
X
X
X
X
x
X
X
X
X
x
X
X
X
x
X
X
X
X
X
X
X
X
X
x
x
x
X
X
X
X
x
x
Happening
X
x
X
X
X
x
Essential and
critical
Essential
Essential
X
X
X
Fundraising
Developing fund raising department
X
Corporate fund raising
Participation in fund raising consortium
X
X
X
X
30
Factor
Need
Resources
Continue existing fund raising activities
Developing corpus/reserve funds
X
X
X
Cost control
Strengthening financial management
Capacity Building of CBOs/NGOs in financial
management
X
X
X
Governance and organizational development
Best employment practices
Talent management (Attract, motivate and retain
through professional development opportunities)
Succession planning
Mentoring and coaching
Reward recognition
Monitoring and evaluation- HR practices
X
X
X
Sustaining all current activities
Development of web based patient and operational
data capture
Cloud based data and document management
Capacity building
X
X
Organisational safety and security
Optimize assets management
Capacity building of support staff on multi tasking
X
X
X
Capacities
(strengths,
skills)
X
X
Opportunities
Visibility /
Impact
X
X
x
x
X
X
X
X
X
X
X
x
x
X
X
X
X
X
X
X
X
x
X
X
X
X
X
X
X
X
X
X
x
x
X
X
X
X
x
x
X
X
X
X
x
x
X
X
X
X
X
X
X
X
x
Finance
X
X
X
Human Resource
X
X
X
X
X
X
X
X
X
X
IT&MIS
X
X
Administration
X
X
X
31
Remarks
Essential
Annexure-7
LEPRA UK Strategy 2007-10
Our Vision
A world in which the poorest and most marginalised people have equitable access to health and
improved quality of life
Our Purpose
We work to address unmet health needs of people affected by Leprosy, Tuberculosis, HIV/AIDS
and other health conditions exacerbated by poverty, discrimination and stigma
LEPRA Health in Action has a long history of working in areas that other agencies will not. This
has been true from our beginnings in 1924 and is true today – Orissa, Bihar and Madhya
Pradesh in India, Angola and Guatemala are examples. In a like manner we concentrated on a
disease that today still carries one of the highest incidences of stigma of any disease, leprosy.
Lymphatic filariasis, leishmaniasis and HIV/AIDS are also stigmatising, as is TB through its
association with HIV/AIDS.
Values
•
•
•
•
•
Equity: We work to improve the health of some of the most disadvantaged people
around the world
Respect and dignity: We are a people focused organisation, working to eliminate
stigma and marginalisation caused by disease and poverty
Creativity: We encourage innovation in the solutions we adopt
Efficacy and Quality: We ensure that our resources are used in the most efficient and
cost effective manner and that the quality of our services is uniformly high
Sustainability: We believe that the principal responsibility for the provision of health
care rests with governments. We work to bring about structural changes which produce
long lasting benefits
Areas of Operation
LEPRA Health in Action currently supports programmes and projects in Africa, Asia and Latin
America. We will, funds permitting, respond to further requests for support from all three
continents.
32
How we work:
•
•
•
•
•
Focus on people: We help people to change their lives in addition to addressing the
effects of disease
Provision of services: LEPRA Health in Action works directly with individuals and
communities, ensuring that those most in need can access the services they require
Catalyst, coordinator, collaborator: As well as direct service provision through local
staff, we also support national and local NGOs, and work with governments, international
NGOs, communities and other change agents to achieve the greatest possible impact.
We support national and local government programmes both financially and technically.
We collaborate with a wide range of international health and development organisations
and with funding agencies
Impact: We regularly monitor and evaluate the effectiveness of our interventions and
make changes where appropriate
Accountability:
We ensure that our supporters, partners, counterparts and
beneficiaries are informed and involved in appropriate ways
Our Structure
LEPRA Health in Action is a registered Charity. Our governance is the responsibility of an
Executive Committee the members of which are Trustees of the Charity, with a President (Sir
Christian Bonington) and a Patron (Her Majesty Queen Elizabeth II). The Chief Executive and
staff advise on policy and implement policy set by the Trustees. Our fundraising department is
split between our office in Colchester and a Regional, home based, Fundraising Team. These
teams, along with the Programmes Team and general administration are supported by a
Finance and Administration Team. We have Country Directors in Bangladesh, Mozambique,
Angola, Brazil and Guatemala and a Representative in Malawi. The programmes in India are
managed by LEPRA Society India.
The Executive Committee and staff are advised by a team of medical and other relevant
experts.
Current Situation
Millennium goals:
In 2000, world leaders issued the Millennium Declaration, setting out eight Millennium
Development Goals (MDGs). Targets for the health-related MDGs include:
33
•
•
•
•
•
reducing infant and child mortality by two-thirds by 2015
reducing maternal mortality by three-quarters by 2015
improving access to reproductive health services
halting the increase in incidence of communicable diseases (AIDS, malaria, tuberculosis)
reducing malnutrition by halving the proportion of people who suffer from hunger by
2015
The Millennium Development Goals provide an important part of the context for the work of
LEPRA Health in Action over the next three years.
Not only are we keen to make a contribution to the achievement of these goals, but we also
recognise that major donors have aligned their criteria around the MDG which will have a major
impact on our fundraising strategy.
LEPRA Health in Action’s income in 2006 was £6m. Our major source of income is the general
public. We also receive income from Governments, the Big Lottery Fund, the European
Commission, the Global Fund, trust and corporate donors and from other members of the
International Federation of Anti-Leprosy Associations – ILEP and other NGOs. Income is also
raised from the Island States (Jersey, Guernsey and the Isle of Man) and Irish Aid. Some
country programmes also raise local income.
This income supports work in nine countries in three continents and includes work with leprosy,
tuberculosis, HIV/AIDS, malaria, leishmaniasis, lymphatic filariasis, health education, research
and disability.
LEPRA Health in Action edits and publishes Leprosy Review, a much acclaimed and cited
international journal.
Overview of the strategic plan
We will consider a formal name change in 2007.
2007-10 will be years of growth for LEPRA Health in Action.
This strategy gives us a framework for both extending the reach of our work, and also for
improving further the quality of health care for people affected by leprosy, tuberculosis,
HIV/AIDS and other health conditions exacerbated by poverty, discrimination and stigma.
34
We are also keen, over the coming period; to develop our public affairs work, both in the UK and
internationally, raising the awareness of the impact of stigmatising diseases, and the importance
of policies to tackle them.
Inevitably, a strategy for growth will have a major impact on all aspects of our operations and on
all our staff – from our presence in the field to our fundraisers and administrators in the UK.
Over this period we will be developing a number of corporate social responsibility initiatives to
underline our commitment to sustainability in all aspects of our work.
The Strategy
Aim 1:
To increase the availability of health care and community support for those
affected by the diseases of poverty, discrimination and stigma
In order to achieve this aim we will work in collaboration with governments, NGOs, civil society
and the private sector to achieve the following objectives. We will also seek to offer services in
those areas where there are serious gaps in provision.
Objective 1.1
Strengthen the capacity of governments to provide health care for those affected by the
diseases of poverty, discrimination and stigma
How we will know if we have achieved this objective: Improved diagnosis and treatment
and access to health care.
Actions towards achieving Objective 1.1 will include:
•
•
•
•
•
•
•
Targeted training interventions for government staff followed by monitoring visits to
assess quality of diagnosis
Further develop our programme of referral centres
Run targeted diagnostic campaigns
Monitor cases being referred for secondary services
Become implementing agency for Global Fund monies for HIV/TB/Malaria in Angola
and Guatemala, whilst continuing this function in Bangladesh, India and Mozambique
Establish a regional office in the Indian state of Bihar
Focussed programmes of scientific research in the UK, Malawi and India
35
Objective 1.2
Develop the capacity of local communities by training and funding local NGOs and CBOs
How we will know if we have achieved this objective: Greater number of local NGOs and
CBOs will be able to meet our operating criteria, and work in full partnership with LEPRA Health
in Action.
Actions towards achieving Objective 1.2 will include:
• Examine the history of NGOs and measure impact of training
• Set minimum acceptable standards for partner NGOs/CBOs
• Monitor our partner NGOs/CBOs to ensure standards are maintained
• Training those who have a health role, including private practitioners and traditional
healers
Objective 1.3
Increase income to be able to deliver this programme
How we will know if we have achieved this objective: We will measure increases in income
from all sources – government funding, funding agencies and the public.
Objective 1.4
Where appropriate we will provide direct services
We believe that the main responsibility for health care lies with governments, but there are
some situations where LEPRA Health in Action will make direct provision.
How we will know if we have achieved this objective: By monitoring our programmes and
through increased partnerships with NGOs/CBOs.
Note: we will prioritise on the basis of return on investment – maximising the impact of our
funding.
Objective 1.5
Establish criteria for determining which countries we work in
Our strategy is for growth, and one area for growth might be to work in new countries. In order
to do so, we need to establish clear and objective criteria.
How we will know if we have achieved this objective: Criteria developed.
36
Actions towards achieving objective 1.5 will include:
• Undertaking research/situational analysis
• Developing the criteria
Aim 2:
To develop the quality of health care:
we will maintain, develop and
disseminate LEPRA Health in Action standards of best practice
LEPRA Health in Action has world class expertise in health care for those affected by the
diseases of poverty, discrimination and stigma and has developed a number of proven working
models. This strategy provides a framework within which we can share that expertise, and
improve the quality of services available.
Objective 2.1
Promulgate our existing proven working models
How we will know if we have achieved this objective: Adoption of models.
Actions towards achieving objective 2.1 will include:
• Input from medical and other relevant experts, including targeted visits
• Invite government observers to visit our programmes
• Deepen relationships with governments
• Use endorsements from users and funders more widely
Objective 2.2
Initiate new ways of working, develop new working models
LEPRA Health in Action has over 80 years experience to draw on, coupled with a commitment
to innovation and creativity in its work.
How we will know if we have achieved this objective: Development of new working models.
Actions towards achieving objective 2.2 will include:
•
Development of LEPRA Health in Action wide monitoring and evaluation scheme
(see below)
•
Networking and sharing best practice between LEPRA Health in Action field offices
37
Objective 2.3
Improve LEPRA Health in Action wide monitoring and evaluation, learn from and act
upon the results
How we will know if we have achieved this objective: Development and adoption of an
agreed monitoring and evaluation scheme.
Actions towards achieving objective 2.3 will include:
• Collection of baseline data wherever possible
• Current situational analysis
• Undertaking operational research
• Develop scheme
Aim 3:
Raise profiles of neglected diseases and address the effects of poverty,
discrimination and stigma
In order to raise the profile of the diseases of poverty, discrimination and stigma, LEPRA Health
in Action will also need to raise its own profile and develop its brand.
Objective 3.1
LEPRA Health in Action will enhance its reputation as a policy influencer
How we will know if we have achieved this objective:
Sitting on appropriate
national/international panels. Increased press coverage, more people contacting LEPRA Health
in Action, approaches by governments and NGOs, stronger relationships with an increased
number of NGOs.
Actions towards achieving objective 3.1 will include:
• Develop public affairs activities to build influence in UK and advise and support the
building of influence in those countries where we work
• Develop LEPRA Health in Action brand identity
Objective 3.2
LEPRA Health in Action will have regular dialogue with policy makers and beneficiaries
How we will know if we have achieved this objective: Through feedback from meetings.
Actions towards achieving objective 3.2 will include:
• Undertake social monitoring to ensure the participation of civil society
• Improve contact with key government officials and funders
38
•
•
•
More systematic dissemination of good experiences
Invite government observers to visit model projects
Map and monitor number of groups we are involved with
Objective 3.3
Propose solutions based on proven LEPRA Health in Action working models
How we will know if we have achieved this objective: Models will be replicated in other
areas.
Actions towards achieving objective 3.3 will include:
• Ensure all action plans and models are monitored and disseminated
Objective 3.4
Increase income
Not only will increased income enable us to seize more opportunities, and develop more
effective public affairs activities, it will also enable us to grow – thereby enhancing our
reputation.
How we will know if we have achieved this objective: We will measure increases in income
from all sources – government funding, funding agencies and the public.
Aim 4:
Demonstrate corporate social responsibility
Objective 4.1
To take into account the economic, social and environmental impact of our activities
How we will know if we have achieved this objective: When a corporate social responsibility
policy is developed.
Actions towards achieving objective 4.1 will include:
• The establishment of a working group
39
Annexure-8
LEPRA UK Strategy 2011-15
Vision
Our vision is for LEPRA Health in Action to be the partner of choice for those seeking to bridge
the health gap for people in need
Purpose
Our purpose is to transform lives of people affected by leprosy and other health conditions
exacerbated by poverty and social discrimination
We do this by:
• being driven by the needs of the communities in which we work
• working across a wide range of health activity including health education, diagnosis
and treatment, prevention of and rehabilitation from disability, and enabling economic
independence
• raising funds in the UK, in countries where LEPRA works, and internationally
• working in health areas that build on our knowledge, skills and expertise empowering
communities to ensure that their health related problems are addressed now and for
the future
• developing, implementing and sharing evidence based sustainable models of
excellence
• working directly, and in appropriate partnerships to give the greatest number of
people access to lasting quality services
• raising awareness of health issues with the general public, organisations and
governments and influencing national and international policies
• recognising that people in need can be marginalised and made vulnerable by their
health status, lack of access to appropriate treatment, gender, disability, their
community, geography or poverty
• recognising that women have a vital role to play in the overall health of society
• currently working in India and Bangladesh across a range of diseases such as
leprosy, lymphatic filariasis, TB, HIV and Aids, malaria, and eye health, we are open
to new opportunities that make best use of our skills and have a positive impact on
the health of our target communities
Values: these values represent the ideas and principles that will guide our thoughts and
actions, both internally and externally. We will be:
40
People focused
We will be guided by principles that reflect our people focused purpose. Respectful of diversity
and diligent in our adherence to human rights, we will ensure dignity of treatment and equality of
opportunity for all our beneficiaries, service-users, and stakeholders. Our organisational
activities will be guided by the ethics of professionalism, a requirement for involvement and
teamwork, and the need for empathy and active listening in all interpersonal relationships.
Open
We will be open, receptive, and transparent in all we do, promoting a culture of honesty and
integrity which will both enable quality and value creativity. Information will be accessible to all
and models of best practice shared internally and externally.
We will operate under the principle that questions are admissible and answers are available.
We will be passionate about listening to stakeholders while being honest about ourselves. We
will endeavour to expand our learning and be receptive to new ideas; we will be as forthcoming
about challenges as we are about successes; and will be unremitting in our bid to constantly
improve our transparency, accountability, honesty and integrity.
Dynamic
We will look for, and be sensitive and responsive to, evolving needs of our target population,
donors and partners as well as political, social and economic changes in the places where we
work and beyond. We will be forward looking and innovative in all that we do being guided by
our vision, purpose and strategic principles. This involves thinking outside and beyond what we
do now whilst ensuring that we are being realistic about what we can and should be doing and
who we should be working with.
Effective
We will measure our effectiveness and make it an integral part of our decision making.
Decisions will be made based on the expected outcomes for a given input, informed by
evidence gained through experience. Positive impact will be our byword for success, as
measured first and foremost by the long-term effect of our work on people’s lives. We will put
into place strong systems throughout the organisation which evaluate our performance in a
uniform, participatory, thorough and open way. We will be aware of, and seek to minimise the
environmental impact of our work.
41
We are committed to professionalism, competence and proficiency delivered through
appropriate institutional and human resources. For us, value for money will mean the best
possible use of resources for the largest transformative effect and will be prioritised.
Strategic principles
When looking at the potential for work in a new geographical area it must
• draw significantly on existing skills and knowledge
• be an area of need identified by recognised assessment tools
• create the opportunity to implement a leprosy intervention as part of or alongside the
main programme of work
• have local LEPRA governance structure and UK board of trustee approval that it is in
line with the strategic direction
When broadening activity in an existing area
• if beneficiaries have concurrent health problems then we would seek to help them
access appropriate services with an emphasis on referral
We will always have a measure of active involvement with the beneficiary to better inform our
work.
The ultimate responsibility for governance rests with the UK board of trustees but they will
promote open working and a full exchange of information with local LEPRA governance
structures, working together towards a mutual strategy.
LEPRA will build up an operational reserve to enable it to respond to identified needs and
potential impact rather than be driven by available donor funding.
Strategic Aims
During the period of this strategy we will measure performance against the following strategic
aims
•
•
•
•
•
•
•
Respond to community need with quality health interventions
Influence change
Deliver sustainable solutions
Improve knowledge to support decisions
Build and use resources effectively to deliver the strategy
Increase profile
Ensure systems and structures can support delivery of the strategy
42
LEPRA Health in Action Strategy map
Vision and Purpose
Programme perspective:
Meeting the needs of our
beneficiaries
Purpose: to transform the lives of people
affected by leprosy and other health
conditions exacerbated by poverty and
social discrimination
Respond to community
need with quality health
interventions
Resource perspective:
Generation and management of
resources to deliver the strategy
Organisational
perspective: Ensuring the
organisation has the tools to
deliver the strategy
Vision: to be the partner of choice for
those seeking to bridge the health gap
for people in need
Influence
change
Deliver sustainable
solutions
Build and use resources
effectively to deliver our
strategy
Ensure systems and
structures can support
delivery of the strategy
Increase profile
Learning and growth
perspective: ensuring we have
the skills and knowledge to
deliver the strategy
Improve knowledge to support
decision making
43
Strategic aims mapped onto board of trustees monitoring model
Programme perspective: How is our programme performing
in relation to our purpose and vision?
Resource perspective: How are we doing in terms of
generation and use of resources to support our purpose?
Respond to community need with quality health interventions
Health education
Diagnosis and treatment
POD
SER
Build and use resources effectively
to deliver the strategy
Fundraising
Marketing
Financial analysis/ cost effectiveness
Deliver sustainable solutions
Community empowerment
Partner capacity building
Models of excellence/ best practice
Influence change
Civil societynetworks
Government and multilateral interaction
National/ international visibility
Advocacy
People
focused
Effective
Vision: to be the partner of choice for those seeking
to bridge the health gap for people in need
Purpose: to transform lives of people affected by
leprosy and other health conditions exacerbated by
poverty and social discrimination
Increase profile
Communications strategy
Dynamic
Open
Ensure systems and structures can support delivery
of the strategy
Improve knowledge to support decisions
Leprosy Review
Research
Monitoring and evaluation
Impact
Recruitment, retention and training of skilled staff and volunteers
Workplans and appraisals
Financial management
IT systems
Programme information
Governance
Risk register and analysis
Learning and growth perspective: Are we developing the skills and
knowledge to deliver the strategy?
44
Organisational perspective: Do we have the tools to do the job?
Annexure-9
Shared vision and aims - LEPRA UK and LEPRA Society strategies
Commonality between 2008-2013 (LEPRA Society) and 2007 -2010 (LEPRA UK)
LEPRA UK 2007 -2010
Vision
A world in which the
poorest
and
most
marginalised
people
have equitable access to
health and improved
quality of life
Mission/
Purpose
We work to address
unmet health needs of
people affected by
leprosy, TB, HIV/AIDS
and other health
conditions exacerbated
by poverty, discrimination
and stigma
Values
Equity, respect and
dignity, creativity, efficacy
and quality ,
sustainability
LEPRA Society
Remarks
2008-2013
Equitable Access to Health LEPRA UK- World
and an improved life for
India’s poor and Marginalised LEPRA Society- India
Communities
in place of world
LEPRA Society; Health in
Action is a health and
development organisation
working to restore Health,
Hope and Dignity to people
affected by leprosy,
tuberculosis, Malaria,
HIV/AIDS, blindness and
other health conditions
exacerbated by stigma and
social discrimination
Equity, respect and dignity,
credibility, creativity, care
and commitment, ethics,
efficacy and quality ,
sustainability
45
Bottom up approaches
followed:
LEPRA UK
• Unmet needs
• Mentioned the word
poverty
LEPRA Society
• Health and
development and
restore health,
hope and dignity
(adopted from
previous LEPRA
UK strategy )
Added two diseases
malaria and blindness
Bottom up approaches
followed
Strategic
Aim
Aim 1
Aim 2
Aim 3
Aim 4
LEPRA UK
LEPRA Society
To increase the
1. To increase access and
availability of
availability of health care and
health care and
community participation
community
support for those
affected by the
diseases of
poverty,
discrimination
and stigma
To develop the
2. To enhance the quality of
quality of health
health care by improving
care: we will
organisational capacities and
maintain,
by developing and
develop and
disseminating standards of best
disseminate
practice.
LEPRA Health in
Action standards
of best practice
Raise profiles of 3. Raise the profile of diseases of
neglected
stigma and poverty and
diseases and
address the effects of poverty,
address the
discrimination and stigma.
effects of
poverty,
discrimination
and stigma
Demonstrate
corporate social
responsibility
Remarks
LEPRA Society:
• Conceptualized
Indian context
to
LEPRA UK and
LEPRA Society- Similar
LEPRA UK
• Neglected diseases
LEPRA Society
• Profile of diseases of
stigma and poverty
4. Undertake research to improve
•
knowledge and develop
strategies to support health
care of infectious and allied
diseases of importance in
collaboration with
academics/institutions/ disease
control programmes.
Aim 7 of LEPRA
Society is similar to
LEPRA UK’s Aim 4.
•
Aim 4 of LEPRA
Society is in line with
aim 2 of LEPRA UK
with
focus
on
research.
46
Strategic
Aim
Aim 5
Aim 6
Aim 7
LEPRA UK
LEPRA Society
5. To further reduce the leprosy
Remarks
LEPRA Society:
load (impact, incidence) and
• Exclusively focus on
support leprosy affected
leprosy in line with
persons.
LEPRA UK Aim 3
6. Build organisational capacity to LEPRA Society’s aim 6
improve effectiveness,
is under the objective
credibility, sustainability through Aim 1- To develop
resource mobilization.
organizational capacities
and focus on resource
mobilisation.
7. Demonstrate social
In line with strategic aim
responsibility
4 of LEPRA UK and
focus
on
social
responsibility
47
Annexure-10
References
A) Consultations and their consolidation
1) Internal consultations; Regional Departments;
2) External consultations-External stakeholders, donors, NGOs, Consortium members,
Academic/research institutions, Government departments
3) Community/Community
based
organisations
–
Community,
Beneficiaries
and
Community Based Organisations
B) Review documents
1) WG3:Communicable and non-communicable Diseases- 12th five year plan
2) WHO Enhanced Global Strategy for Further Reducing the Disease Burden Due to
Leprosy (2011-2015)
3) Categorisation of Districts for Improving Effectiveness of National Leprosy Eradication
Programme – A Focussed Approach
4) Leprosy – A Continuing Challenge, LEPRA Society Health inaction action position paper
5) Press Information Bureau, GOI Ministry of Health and Family Welfare19-March, 2013
14:12 IST, Special emphasis for Eradication of Leprosy
6) MoU ILEP and NLEP
7) ILEP position paper
8) LEPRA Annual reports and special initiative reports
9) LEPRA UK strategy for 2011-15
10) LEPRA Society Strategy 2008-13
11) Research priorities in leprosy, WHO, Expert committee report on leprosy-2012 eighth
report;
12) Research and development-ILEP position paper July 2013
13) ICMR thrust areas on communicable diseases
14) NTDs-ILEP document on NTDs
15) London declaration on NTDs
16) Bangkok declaration Towards a Leprosy-Free World - International Leprosy Summit –
Overcoming the Remaining Challenges, Bangkok, Thailand, 24–26 July 2013
17) WHO – Weekly Epidemiological Record – 24th August 2012, No. 34, 2012, 317-328
18) National AIDS Control Organisation (NACO) Annual Report 2012-13
48
19) Global data on visual impairment in the year 2002. Bulletin World Health Organ 2004;
82: 844–851
10/07/2013
20) National Programme for Control of Blindness control of blindness, Government
of India ,
Report of the Working Group on Disease Burden for 12th Five Year Plan
21) An overview of The High Level Panel’s report on the Post-2015 Development Agenda
and its relevance to Lepra shared by LEPRA UK
49