Lepra strategy

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Patron: Her Majesty The Queen

Restoring lives: Our strategy

2016-2020

Our vision is to be a leader in reducing the incidence and impact of leprosy and other neglected diseases.

Driven by our focus on leprosy, our purpose is to enable children, women and men affected by neglected diseases to transform their lives and overcome poverty and prejudice.

Restoring lives: Our strategy 2016-2020

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Our strategy renews our efforts to make leprosy a disease of little consequence; easily diagnosed and treated, leaving no obvious disability and attracting no stigma. It compels us to support children, women and men to live healthy and economically secure lives, participating and contributing in their communities.

Our bold vision will require us to deliver our proven expert and unique approach, to collaborate even more widely and to advocate together with the people affected. Leprosy remains at the heart of our work, it is widely forgotten or thought to be eradicated but we continue to work in the world where this and other neglected diseases are most prevalent.

Expertise Our pioneering combined approach now evidenced and shared with others, will be taken to new scale in the next five years. It is vital that skills and knowledge required for leprosy will be maintained and lack of detection and access to health provision for whatever reason will not continue to fail people.

We will use our expertise to tackle the wider scale of other neglected diseases linked by symptom, treatment, management or location; including lymphatic filariasis (sometimes known as elephantiasis), tuberculosis and confronting vector borne diseases on a larger scale.

Our approach will reach many more people, demonstrating greater impact and bringing added value for our service and our donors.

Unique We work at community level through our own staff and volunteers, building on our established credibility and putting people first.

We work with people who are often in poverty and marginalised by discrimination or disability and through our holistic approach we will seek out those furthest behind first1. We will enhance our investment in supporting networks that mean we can achieve more than we could on our own, using partnerships and collaborations to advocate for and achieve change.

Incidence

Innovation We will focus on closing gaps - supporting individual gender needs and issues that disproportionately disadvantage women and specifically affect men. We will understand population shifts and recognise and develop specific skills to meet needs in urban areas.

We will champion new work in water, sanitation and hygiene and in disability, two areas that underpin our overall purpose.

Targeted research will build on our experience, for example, learning from our recognised contributions to formal disease mapping, we will deliver new situational analysis of visceral leishmaniasis in Bangladesh.

Our leprosy monitoring and evaluation will help develop ourselves and the wider field of neglected tropical diseases we work in.

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Ref Global Sustainable Development Goals 2015.

Neglected diseases

A diverse group of infectious diseases that are prevalent in low income populations.

Impact

Number of people newly affected by a disease or medical condition in a given geographical area over a specified period of time (note: if we are successful we expect incidence to increase initially).

The adverse consequences of leprosy and other neglected diseases for the health, economic or social status of individuals, their families and communities.

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Restoring lives: Our strategy 2016-2020

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200,000 - 250,000 new cases of leprosy a year Although 16 million people have received effective multi drug therapy (MDT) for leprosy, the world has not achieved the stated goal of ‘a world without leprosy’.

For the last 10 years the annual figures of new leprosy cases have remained relatively static between 200,000 and 250,000 new cases a year, with nearly 60% of these being located in India and three quarters of the remainder shared between Brazil, Indonesia, Ethiopia, DRC, Nigeria, Nepal and Bangladesh2.

3 million undiagnosed cases Experts suggest there are some 3 million undiagnosed cases of leprosy in the world today. Public, donor, and government focus on leprosy has diminished since the global declaration of the ‘elimination of leprosy as a public health problem’ in 2000 (2005 in India), and leprosy related skills are being lost.

4 million people live with physical consequences An estimated 4 million people live with physical consequences of experiencing leprosy, with untold numbers dealing with stigma and discrimination. An individual is regarded as cured of leprosy once they have completed a course of MDT, and their continuing needs for health and social services, and economic opportunities are not factored into government leprosy programmes.

Lepra has been at the forefront of progress in leprosy from the development of effective drugs and their application in remote settings, to ground breaking techniques for reconstructive surgery and physical rehabilitation.

Our learning has been shared and adopted widely by governments and other non-governmental organisations.

Leprosy is a neglected tropical disease (NTD) Leprosy is a neglected tropical disease (NTD) but is not fully integrated into World Health Organisation (WHO) and government NTD programmes, often remaining isolated as a vertical programme. The inclusion of NTDs in the Sustainable Development Goal (SDG 3.3) is a real opportunity to re-energise the fight against leprosy by integrating further into the NTD community.

We have demonstrated that we can use our experience to address other neglected diseases particularly disability management and stigma reduction in lymphatic filariasis (LF). Given the scale of LF (120 million cases worldwide with 40 million living with an LF disability) and a strong overlap in endemic areas, we have a real opportunity to rebuild leprosy knowledge and skills, and access new sources of funding through working in combination with LF. The global annual incidence estimate of visceral leishmaniasis (VL) is between 201,500 and 378,500 cases. Over 90% of cases occur in six countries (Bangladesh, Brazil, Ethiopia, India, Nepal and Sudan) with India accounting for about 50% of the global burden. We have some limited experience of successfully applying our community based approaches to tackle VL and need to demonstrate this on a larger scale.

During this strategy:

We will enable more people to receive appropriate treatment for leprosy.

The people we work with will have a significant increase in personal income.

Investing to Overcome the Global Impact of Neglected Tropical Diseases, Third WHO Report on Neglected Tropical Diseases 2015, Ch 4, Page 131.

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We aim to remove discriminatory laws in India and Bangladesh.

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Restoring lives: Our strategy 2016-2020

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Our values

Key principles We will be guided by the Global Sustainable Development Goals principle to leave no-one behind.

Our work will be based on where there is a clear need, a gap in services, the ability to leverage funds, where we can use our resources effectively, and where it will strengthen our advocacy. For the period of this strategy we will work in Asia and Africa.

The content and direction of our work will be informed by people who have direct experience of leprosy, lymphatic filariasis and visceral leishmaniasis.

People centred, together with the people we work with and for, acknowledging the world from their perspective.

Advocacy has a key role in enabling us to deliver our purpose and we will grow our advocacy to gain maximum impact for the people that we work with. We will use associations, partnerships and collaborations to achieve the change that we want to see and position Lepra as an expert organisation.

Our board will provide excellent strategic leadership, support and challenge to the management team whilst holding in trust the charitable objects of Lepra. They will work with each other and the staff to facilitate a culture of productive, constructive partnership.

Transparent and accountable to the people we work with, our staff, supporters and stakeholders.

Living our values, we will ensure that we are positioned to deliver maximum impact.

At Lepra our trustees and management team believe that our values should flow through all that we do and this includes fundraising. We have structures in place to ensure this. We will tell donors the impact of their gifts, use funds responsibly and provide honest and transparent information about our finances and expenditure.

We will invest time and resources into supporting networks where by working together we can achieve more than by working alone.

Innovative and demonstrating bold leadership at all levels.

Effective and efficient; Delivering the best value with our resources.

Collaborative, working together to achieve the benefits of synergy.

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Restoring lives: Our strategy 2016-2020

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We will deliver our goals: Goal one

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Meeting the need through supporting children, women and men to transform their lives.

We will put the individual and their needs at the heart of all we do.

We will advocate on behalf of children, women and men, influencing new practices and policies, challenging bad laws and changing perceptions.

We will maximise programme impact by developing combined approaches and addressing key cross-cutting themes including WASH, disability and gender.

Goal two Learning from what we do to become a better informed and learning organisation.

We will measure, analyse and document the impact of all our activities and the lessons learned.

We will use this evidence to guide our own actions and share it widely to help build the capacity of governments, partners and other strategic agencies and forums.

We will translate our learning into other areas of our work to accelerate the development of powerful interventions.

We will identify, undertake and facilitate quality research relevant to our purpose.

We will facilitate the continuous learning of our people to develop as professionals, able to enhance the delivery of our vision and purpose.

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Goal three Managing our resources to ensure we are able to deliver maximum impact.

We will raise our profile to become the partner of choice for donors, peers, governments and the people we work with.

We will have a secure, diverse and ethical funding base, valuing our donors and demonstrating transparent practices.

We will attract and retain engaged, motivated, skilled staff.

We will uphold sector best practice and have appropriate systems, ICT and robust procedures in place to support our work.

Indicators – our measures of success Our major programmatic directions are informed by the people we work with and we will report our impact back to them.

We will significantly increase the number of people with undiagnosed leprosy that we enable to access appropriate treatment.

Personal incomes of the people we work with will substantially improve.

We will be working where we can have greatest impact on the need.

75% of our direct programme expenditure will be spent on the three core diseases of leprosy, LF and VL.

25% of our direct programme expenditure will be spent on combined approaches and cross cutting themes.

There will be no specific leprosy discriminatory laws in India or Bangladesh.

We will understand and have impact data for all new people coming to Lepra since 2016 (a minimum of 50,000).

Fundraising costs will be no more than 13% of turnover.

We will be seen as an expert voice, the ‘go to’ people.

We will grow our turnover by 30%.

We will achieve an overall voluntary fundraising ratio of at least 4:1.

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Restoring lives: Our strategy 2016-2020

www.lepra.org.uk

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The next 5 years...

Our work must reflect global and regional issues such as poverty reduction, economic growth and changing demographics.

This includes population shifts and pressures, and the growing acknowledgment that climate change will affect habitation and essential resources and cause specific issues for the most vulnerable people. We have considered attitudes and behaviours of civil society, governments and the potential challenges and opportunities this may bring for Lepra.

External implications shaping our strategy The majority of people living in poverty live in middle income countries where they face rising inequalities. Middle income countries have been deprioritised by government and institutional donors (for example in Asia) where leprosy and neglected diseases are highly endemic.

We will need to work in countries where it is difficult to attract major donor funding.

We cannot focus on health alone if the people we work with are to transform their lives. We recognise that factors such as poverty, poor water, sanitation and hygiene (WASH), and crowded living conditions contribute to both spread of infection and the subsequent consequences of leprosy and other neglected diseases.

We will work holistically to support children, women and men to live healthy, economically secure lives, as fully participating members of their communities.

The donor trend towards in-country funding and larger grants will impact how we work. Internally we will build staff skills to ensure the most appropriate response and work collaboratively regardless of geographical source of income.

Externally we will improve our networking with donors and actively seek partnerships for joint project development and implementation.

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Restoring lives: Our strategy 2016-2020

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The UK fundraising environment is changing significantly and opportunities to raise unrestricted funds from the general public are decreasing. Our aim is to fill this potential gap with new methods of unrestricted fundraising and increased grant funding.

We acknowledge the need to monitor funding carefully and to be agile in responding to a potential reduction in income.

To ensure that all parts of the Lepra family align together behind our vision, the strategic planning process was based on a strategic framework with common vision, purpose, values and programmatic goals, brought to life through organisational and country strategies.

Neglected diseases have an impact on, and are impacted by, eight of the SDGs including health, poverty, gender equality, WASH and economic growth.

By focusing on a narrow range of neglected diseases we may attract lesser levels of funding than if we widened our remit to work in areas that attract greater levels of funding. We believe this will achieve greater progress towards our purpose, however, this means we are unlikely to grow in turnover more than 30% over the period of this strategy.

We will have maximum impact through working together in a focused and collaborative manner.

We will concentrate on addressing the issues created by the neglected diseases of leprosy, lymphatic filariasis and visceral leishmaniasis. We will work in combined approaches with other diseases such as tuberculosis and malaria where this increases the opportunity to achieve our purpose. Aware of the interdependence of health, social and economic issues for people living in poverty, we will strengthen the delivery of our purpose through addressing cross-cutting themes such as WASH, disability, and differences due to gender.

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Patron: Her Majesty The Queen Registered Charity Number: 213251 (England and Wales) SC039715 (Scotland)

Kalpana’s story...

Kalpana, from India, married at the age of 17 to an army officer who was posted at a border station.

On one of his six-monthly visits home, he noticed darker patches on Kalpana’s body and realised that she had leprosy. He was angry that her family had kept this from him at the time of their wedding because of the significant stigma surrounding the disease. He started to beat her; the violence continued for five years. When he broke Kalpana’s leg, she went to the hospital but returned home to find her belongings thrown out of the house.

Their four-year old daughter was also banished from the home.

Strategy 2016-2020

Lepra was the “helping hand” in Kalpana’s crisis. She received free treatment and completed the six-month course of multi-drug therapy which has cured her of leprosy. The patches have disappeared and she looks healthy once again. Her husband, however, refused to take her back. We are helping her to file for divorce and get the financial support she needs and deserves.

With a loan of 30,000 INR (£294) Kalpana has started a small grocery shop next to her parents’ home. She earns about £2.50 to £3 a day and is proud to contribute to her parents’ household instead of feeling like a burden to them. Her daughter, now seven years old, attends a local primary school and is thriving. Soon, we will be employing Kalpana as a community ambassador (lokdoot).

Lepra was founded in 1924 to ‘carry out investigation of and promote research into the causes, treatment, cure and prevention of the disease of leprosy and any allied disease, and give and grant assistance to any persons suffering from, … or the family or dependents of such persons’. We were declared the world’s first leprosy prevention organisation in 1931.

We value our relationship with you and your trust, and we therefore guarantee the following: • We follow all Data Protection legislation and guidelines from the Institute of Fundraising and Fundraising Standards Board. We do not share any information with any third parties for contact or sales purposes

Lepra 28 Middleborough Colchester Essex CO1 1TG T +44 (0)1206 216 700 lepra@lepra.org.uk www.lepra.org.uk

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• We only contact you by the methods you have agreed and we take extra special care when communicating with vulnerable people • We always tell you how your support is helping to change the lives of people fighting disease, poverty and prejudice