LepraNews Winter 2016
www.lepra.org.uk
In this issue • Sustainable development goals for the next 15 years • Life-changing surgery for men in Mozambique •M ake your voice heard with a gift in your will
Patron: Her Majesty The Queen
World Leprosy Day 2016 A community leprosy awareness event in Sonepur District, organised by Lepra in India.
In this issue Page 3
Introduction by Paul Watson
Page 4 & 5 Sustainable development goals for the next 15 years Page 6 Life-changing surgery for men in Mozambique Page 7 Make your voice heard with a gift in your will Page 8
Fundraising stories
We update our Facebook page and Twitter tweets daily so please like and follow us! facebook.com/LEPRAHealthinAction @Lepra_HinA We’re also on Instagram! instagram.com/lepra1 Our front cover features a father and his children in India. They are all affected by leprosy.
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World Leprosy Day, on Sunday 31st January, is a time to celebrate the advances made in finding a cure and reducing the incidence of the disease. It’s also an opportunity to raise awareness of our work and draw attention to the millions of people who continue to be affected by leprosy. According to the World Health Organization statistics for 2014, the number of new cases reported during the year was almost at the same level as in the previous year. South-East Asia, where we work, accounted for 72% of the new cases. However, it’s estimated that there are around three million people affected by leprosy who are not yet included in these figures as they have not received a diagnosis or treatment. The majority of these people are reluctant to seek help because of the stigma and prejudice that still surrounds the disease.
Please read more about our #BeatLeprosy campaign online www.lepra.org.uk/beat-leprosy
The goals and targets are intended to be ‘people-centred’, ‘to realise the human rights of all’ and ‘to achieve gender equality and the empowerment of women and girls’. These are all concerns that are very close to our heart and which have guided our services and advocacy work for many years and will continue to do so.
“ We pledge that no one will be left behind”
With regard to the goals and targets themselves, goal 3, ‘Ensure healthy lives and promote well-being for all at all ages’, specifically references neglected tropical diseases in one of its targets (3.3) and therefore provides a direct link to our work on leprosy, lymphatic filariasis and visceral leishmaniasis.
This was the strong commitment in the introduction of the new global Sustainable Development Goals (SDGs), approved by all 193 countries of the United Nations General Assembly at a special meeting in New York held between 25-27 September 2015. The 17 goals and 169 associated targets have emerged after two years of consultation with a wide range of stakeholders and came into force on 1 January, with the aim that they will be achieved by 2030. The goals span the economic, social and environmental dimensions of sustainable development and range from the eradication of poverty to the promotion of peaceful and inclusive societies. They follow on from and complement the Millennium Development Goals, which have guided international development assistance from 2000 to 2015. So what does this mean for us? In the first instance, the SDGs provide us with a high level agenda in which we can situate ourselves, not only in terms of particular goals and targets, but also our approach to the children, women and men we work with.
We can only achieve our goals with your support. Thank you!
Paul meeting a boy we work with in Bihar, India. As an organisation that seeks to support the individuals we work with beyond the disease that affects them, many of the other 16 goals and targets are equally important to us and our work, such as improved nutrition, gender equality, access to safe water and sanitation, inclusive and sustainable economic growth, reduced inequality, peaceful and inclusive societies, justice for all, and a revitalised global partnership to achieve these ends. Over the next 15 years the SDGs will provide both an important touchstone to guide our day-to-day work and also an important tool to hold those we work with to account, notably UN institutions and signatory nations, in the hope that indeed no one will be left behind in the human development that is promised, especially the children, women and men we work with.
Paul Watson Head of Programmes and Advocacy 3
Sustainable development goals for the next 15 years
In September 2015, world leaders of 193 countries made a commitment to the 17 Sustainable Development Goals (SDGs) for 2016–2030. Here you can see how these new goals reflect the life-changing work that’s already going on at two of our centres in India. Thanks to your generosity, we fund 27 referral centres in seven Indian States, including our Jabalpur Referral Centre and St Joseph’s Centre in the State of Madhya Pradesh. Our approach is holistic: we work with the person, not the disease. The treatment, care and support we provide goes far beyond addressing someone’s medical condition.
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NO POVERTY
Looking beyond the disease As well as helping people with medical problems, we do everything we can to help them rebuild their lives, earn a livelihood and participate fully in a supportive community. Last year, for example, skilled craftsmen at St Joseph’s Centre custom-made 380 pairs of sandals for people with leprosy or lymphatic filariasis (LF, sometimes known as elephantiasis). The sandals have microcellular rubber soles so that people can avoid pain and injury and protect ulcers, enabling them to walk to work or school safely. The sandals can also help to reduce swollen legs, one of the symptoms of LF. Our staff also make people aware of their rights. In these two centres alone, we help around 5,000 people each year with applications for governmental support to which they are rightfully entitled. These small allowances and pensions make a huge difference to people living in poverty.
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GOOD HEALTH AND WELL-BEING
Just £9 pays for two pairs of custom-made sandals which enable people to walk without injury.
Early detection, diagnosis and self-care Early detection and diagnosis of disease are essential to prevent the development of disabilities in children, women and men. Last year, our staff at Jabalpur Referral Centre held nearly 500 talks in schools and more than 300 with community groups, helping to dispel myths, reduce stigma and increase knowledge about neglected diseases and the importance of early detection. These vital education programmes enable people to recognise symptoms and overcome the fear of stigma, giving more people the confidence to seek our support. By teaching and encouraging self-care practices and good hygiene, we also improve people’s health by helping them to manage and control the symptoms and effects of disease.
Practising self-care 4
£30 can pay for 10 self-care kits, with essential soap, oil, towels and disinfectant.
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Helping people to get on with their lives Disability caused by disease, combined with stigma and prejudice from others, can severely limit people’s ability to earn a living and provide for their families.
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DECENT WORK AND ECONOMIC GROWTH
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GENDER EQUALITY
Experienced physiotherapists at our centres help people to manage disabilities, as well as training people in pre- and postoperative exercises if they are to undergo reconstructive surgery. The support they provide enables people to overcome their A new career in tailoring disabilities, so that they can once again provide for their families or return to school. In many areas we also support people through self-help groups by teaching new skills and providing small loans, enabling them to start their own businesses.
£40 can help provide a small loan to enable someone to start a tailoring business.
Transforming lives with reconstructive surgery In both of our Madhya Pradesh centres, reconstructive surgery transforms lives by reducing both the visible signs and the disabilities attached to leprosy. In 2014-2015, the Jabalpur Centre arranged nearly 200 procedures and St Joseph’s more than 100. There is always a long waiting list, but we give priority to women who are threatened with divorce or ostracised in their community.
REDUCED INEQUALITIES
£150 can fund life-changing reconstructive surgery to help someone overcome the disabilities caused by leprosy.
Making sure everyone gets the message We run education programmes in many areas with a low level of literacy, so information leaflets aren’t always the best way to spread vital knowledge. That’s why our staff also employ imaginative and innovative ways to share information. Our St Joseph’s Centre, for example, is based in a rural area with a literacy rate of 60-70%; only 54% of women are literate. Through traditional folk theatre, songs and films, our staff get their message across in a way that includes everyone. What’s more, staff in mobile outreach clinic vans visit remote areas to make sure our services are available to people who, through poverty or disability, are not able to travel long distances to a centre.
£1,300 funds a community outreach worker for one year and a health awareness campaign reaching 5,000 people.
Sharing information at a health education van 5
Life-changing surgery for men in Mozambique
Zambezia is the second most populated province in Mozambique with around four million people. It’s also a region blighted by neglected diseases. Around 300 people are diagnosed with leprosy each year and millions are at risk of lymphatic filariasis (LF). The majority of the people in Zambezia rely on farming to feed their families and to provide a small income for other necessities. Their daily lives revolve around physical chores such as collecting water, harvesting and selling crops, washing clothes and gathering firewood. So, when a family member contracts a debilitating condition such as LF, they can soon be unable to work and provide for their families. The impact on the whole family can be devastating. When Assuate Mussa noticed a swelling in his scrotum, it threatened his livelihood as a farmer and his future. After travelling to the local healthcare centre, he was diagnosed with LF and hydrocoele – a collection of fluid that can cause a large swelling in the scrotum. It’s a disabling, painful and traumatic condition that affects an estimated 25 million men worldwide, according to the World Health Organization.
Mussa was given drugs which eventually stopped the growth of the hydrocoele, but left him with a large swelling that continued to impact on his daily life and could only be removed with surgery. He said, “I don’t go to the farm as often as I used to. I’m not as strong as before. It is too far away and when I walk for too long, I need to sleep as soon as I get home. My body is tired and I need to rest.” Thanks to your support, we were able to extend our work into Zambezia in April 2015, working in partnership with Netherlands Leprosy Relief (NLR). We conducted a survey to identify the areas of greatest need and the services already available. As a result, surgery for hydrocoele started at the end of October after training was provided for surgical technicians to update their skills. This has already made a huge difference to more than 160 men from four districts in Zambezia province. With your continued support we plan to offer this life-changing surgery to many more men like Mussa.
Assuate Mussa
“ I never thought that I would ever be able to have an operation to remove this growth but now it’s all I can think about”, says Mussa, smiling. “That day just can’t come around fast enough for me! I think I’m going to feel a lot younger and have more energy to do the things I haven’t been able to do for a long time.”
£10 could fund hydrocoele surgery for one man, restoring his ability to provide for his family. 6
Make your voice heard with a gift in your will “ For over 90 years Lepra has listened to people affected by disease, helping them to transform their own futures. Together, we can be there for many more years to come.” Victoria Hislop, author of The Island and Lepra Ambassador
Leaving us a gift in your will is a powerful way for your beliefs to live on and for your voice to be heard after you’ve gone. We depend on gifts in wills to be able to develop new, life-changing projects. In fact, two new integrated leprosy and lymphatic filariasis (LF) projects in India would not have been possible without this support.
people with vital health education that can lead to earlier detection of leprosy and the prevention of permanent disability. You could also help to fund one of our many long-term projects to improve lives and livelihoods, ensuring that your voice is heard long into the future.
How a gift in your will could transform lives…
These special gifts help us to support people affected by neglected diseases to transform their lives.
£250 could bring vital health education
Your loved ones will always come first in any considerations regarding your will, but you could also provide a lifeline to people affected by leprosy and other diseases. You certainly don’t have to be rich to make a difference – a legacy of any amount will still help us reach even more people with early detection, health education and expert care.
detect the signs of leprosy and tuberculosis.
to 4,000 people in remote communities.
£500 could train 100 village doctors to
£1,000 could help 30 people transform
their lives by starting their own businesses and becoming self-sufficient. Many people with a disability caused by leprosy or LF gain a new lease of life in this way.
By leaving a gift in your will, you could lift even more people out of poverty and despair. The issues facing people living in poverty are only compounded with a diagnosis of a neglected disease and the fear of being ostracised or isolated that can come with it. It’s not surprising that many people attempt suicide and some even succeed. By remembering us in this special way, you can help us tackle the ignorance and fear that delays people seeking help and destroys lives. Around three million people with leprosy worldwide remain undiagnosed, but your support could help us reach many more
For more information about making your will, or amending your current plans, please download our booklet here www.lepra.org.uk/gift-in-your-will or contact our donor support team at donorsupport@lepra.org.uk or phone 01206 216700. 7
A challenge for the cyclists
Fundraising stories It’s nearly time for the Prudential Ride London-Surrey 100! We have guaranteed places for this year’s fantastic event taking place on 31st July. It kicks off in Queen Elizabeth Olympic Park then follows a 100-mile route on closed roads through London and into Surrey’s countryside before returning to The Mall. Will you be one of the riders challenging yourself on the route made famous by the world’s best cyclists at the London 2012 Olympics? The registration fee is just £50 and the minimum sponsorship amount £450, excluding Gift Aid.
Find out more here www.lepra.org.uk/ Event/ridelondon-surrey-100, phone us on 01206 216700 or email events@lepra.org.uk Did you know that schools raised more than £704,600 for us last year? They have some amazing ideas for raising money through sponsorship.
We love schools!
A big Lepra “thank you” to the Year 8 students at St Christopher’s Church of England High School in Accrington who raised £2,165. Community fundraiser Jacqui Fairbairn comments: “The staff and students have been a pleasure and so fabulous to work with. I would love everyone to know how amazing they are – they exceeded all expectations.” St Helen’s School in Northwood, north west London raised more than £10,250 through their ‘Lepra Fun and Fitness Day’ which involved sponsored fitness sessions and a Zumba workout. Pupils from nursery all the way through to Year 13 made a fantastic effort.
Would you like to raise funds for us?
Thank you!
Supporters like you are absolutely crucial to us. Last year, over a third of our income came from both loyal and new supporters. Could you involve your family and friends in an event to have fun and help the children, women and men in Bangladesh, India and Mozambique who urgently need our support? If you’d like some fundraising ideas visit www.lepra.org.uk/whyfundraise-for-us. We know that some of you have very generously asked for donations to Lepra instead of birthday or Christmas gifts. Has the Great British Bake Off inspired you to have a bake sale? Or are you a crafty person who could sell your handmade creations? Could you de-clutter and sell your unwanted items at a car boot or table top sale? Would your friends or family donate in exchange for a lunch or dinner – cash for a curry maybe? You could set up a fundraising page on our website or on JustGiving. Contact our Donor Support team on 01206 216700 for a chat about how you might help.
Discover more about fundraising for Lepra at lepra.org.uk/fundraise
Facebook.com/LEPRAHealthinAction @Lepra_HinA Lepra, 28 Middleborough, Colchester, Essex CO1 1TG Tel. +44 (0) 1206 216700 Fax +44 (0) 1206 762151 lepra@lepra.org.uk www.lepra.org.uk Patron: Her Majesty The Queen Registered Charity Number 213251 (England and Wales) SC039715 (Scotland) 2177/D/AB