LepraNews Spring 2016
www.lepra.org.uk
Inside: read the latest on our new Samastipur project
Patron: Her Majesty The Queen
In this issue Page 3
Our new strategy
Page 4 & 5 Samastipur so far Page 6
A new life for Sakshi
Page 7 Get fit and fundraise Page 8
Exciting news
Our front cover image is by Peter Caton
Our Fundraising Promise to you We value our relationship with you and your trust, and we therefore guarantee the following: •W e follow all Data Protection legislation and guidelines from the Institute of Fundraising and Fundraising Standards Board – plus we don’t share your information with any third parties for contact or sales purposes • We only contact you in the way you have agreed with us, and we take extra-special care when communicating with vulnerable people •W e always tell you how your support is helping to change the lives of people fighting disease, poverty and prejudice
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We work to improve people’s livelihoods as well as their health
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A new strategy in the fight against leprosy Our journey to beat leprosy began in 1924. Since then, thanks to our supporters, Lepra has become a leader in the field, fighting disease and the poverty and prejudice that comes with it. Our aim has always been clear: to help reduce both the incidence and the impact of leprosy and other neglected diseases. Now, with a new strategy, we’re looking to the future with a fresh sense of energy. Over the next five years, with your help, we want to make leprosy a disease of little or no consequence to the person contracting it. This means making leprosy easily diagnosed and treated, so that it leaves no residual disability and attracts no harmful stigma. There are around three million undiagnosed cases of leprosy worldwide, in addition to the more than 200,000 cases that are diagnosed each year. A key part of our strategy is to find those missing millions. As we do, and more people are diagnosed and treated at an earlier stage, fewer children, women and men will have to live with long-term and permanent disabilities as a result of leprosy. It should also reduce new infections over time. Given the inclusion of neglected tropical diseases in the new Sustainable Development Goals, we have been given an opportunity to re-energise the fight against leprosy – and transform lives. With your support, we can help thousands more people overcome not only disease, but also poverty and prejudice. As we move into this exciting new phase, we want to become even better at what we do. This means always putting the individual and their needs at the heart of our work and developing innovative approaches to tackle neglected diseases and the other associated issues of stigma and poverty. It means raising our profile too, and continuing to value the incredible people like you who support us every day. We’re also determined to measure and analyse our work in a more effective way, learn from it and share our knowledge to help other like-minded organisations. I hope you’ll continue with us on this exciting journey. We’re so grateful for the support you give us; together, I know we can make an even greater difference to the millions worldwide living with neglected tropical diseases.
Sarah Nancollas Chief Executive
To read our strategy in full visit www.lepra. org.uk/strategy
Thanks to early detection Aadil has no permanent disability
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Samastipur so far The state of Bihar in India has approximately 10% of the global burden of lymphatic filariasis (LF). Samastipur is the most endemic district within Bihar. Last year, with your support, we began a five-year project to help 120,000 people in the Samastipur district living in poverty (116,000 with LF and 4,000 with leprosy). Our aim is to help people lead healthier, more productive and self-sufficient lives. So how have we got on? Here’s an update on the progress we’ve made as we enter the second year of this vital project. By 2020 we aim to provide 20,000 people with protective footwear
1. Finding those who need help Our first year in Samastipur has been successful. We started by setting up offices in the region and hired 26 essential staff members. Then we enlisted a wonderful group of women volunteers who go out into communities to talk to people about LF, finding those who are too afraid to come forward for treatment.
We also worked hard to get government approvals to equip two public health centres in the district with all they need to perform surgeries for men with hydrocele (fluid accumulated in the scrotum area due to a blocked lymphatic system). Over the five years our aim is to help 25,000 men receive the hydrocelectomies they need.
2. Detecting leprosy and LF early
Our biggest success so far lies in developing close ties with the local government. By building a relationship with them we have been able to establish a shoe unit within one of their health centres. We are also assisting them with drug administration that prevents the transmission of LF and are providing our feedback. Over the coming year, we are hoping to take this collaboration further and work with the local government to tackle the issues of stigma and prejudice, that prevent people from seeking treatment earlier.
However, in order for us to detect cases earlier, people need to feel that they can come forward and that means reducing the terrible stigma that surrounds these diseases. This is why, as our project moves into its second year, it’s critical that we continue raising awareness of neglected diseases and training staff to recognise the early symptoms.
Self-care demonstrations help people overcome their disability
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Early detection is a key part of our project in Samastipur. If people with LF and leprosy are able to get help at an earlier stage, it will significantly reduce the likelihood that they will have to live with a permanent disability.
3. Tackling stigma as well as disease
4. The power of self-care
By taking an integrated, holistic approach, the project will tackle not only people’s health issues, but the attitudes and shame associated with LF. To do this we will take the knowledge we have from leprosy and run awareness activities in 465 villages and establish selfsupport groups so that together those affected by LF are better able to fight for their rights to disability benefits.
The project has been running vital self-care demonstration camps that have transformed the lives of hundreds of patients like Brijnandan Mahato. For the last 10 years, Brijnandan has been struggling with the debilitating effects of LF. He sold his farmland and was spending 80% of his income on various treatments, some of which actually made his affected leg worse.
We also aim to improve the status of people with LF within the health system. So, as well as training healthcare workers and doctors to improve the care they give to patients, we are working to make sure that relevant services are made available to people with LF and leprosy at government-run health centres.
Then, last June, we began teaching Brijnandan self-care practices that have reduced his ulcers and vastly improved his condition. With protective footwear and regular home visits from our staff, Brijnandan is overcoming his disability and is hopeful for a brighter future. He is just one of the individuals we have been able to help by providing training and protective footwear. With your support we can reach our aim of providing these to 20,000 people by 2020.
Brijnandan has learnt self-care practices to reduce swelling in his leg
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5. Sharing knowledge and providing reassurance Counselling is a major focus of our second year in Samastipur. Our plan is to spend time talking to men with hydrocele, and their wives, about having a hydrocelectomy. This counselling will highlight that a hydrocelectomy can completely change a man’s life enabling him to return to his livelihood while improving marital relations. The aim of the counselling is to dispel any myths that the surgery is dangerous so that more men with extreme genital swelling will come forward for treatment. Out of the seven public health centres in the Samastipur area, there are still five that need the equipment and staff training to enable them to perform hydrocelectomies. Our team will be working hard to make sure this happens over the coming year.
could provide five people affected by LF with vital self-care kits, including soap, oil, towels and disinfectant, to help them reduce painful symptoms. 5
“Now I can write again and fulfil my dream to become a teacher” Thanks to you! From misdiagnosis to the right treatment
Sakshi was just 10-years-old when she noticed the little finger on her right hand had become swollen and painful. After a few weeks, her whole hand had become numb and she was having trouble gripping her pencil. Her classmates noticed and started to bully her, calling her “lulli”: a derogatory term for someone who is disabled. Eventually, unable to keep up with her class work, Sakshi had to stop going to school.
leprosy. Thankfully, she was immediately sent to Lepra’s referral centre in Munger. There, she was prescribed a 12-month course of steroids and multidrug treatment that helped to turn her life around. With physiotherapy, Sakshi soon regained the strength and flexibility in her hand. Now she’s able to grip a pen and write once again.
Sakshi’s worried parents took her to the health centre in her village, Tetia Bamber. However, due to a lack of training at the health centre, she was misdiagnosed and prescribed drugs that didn’t actually treat her condition. Tragically, Sakshi carried on with the treatment for a whole year at a cost of over Rs 20,800 (£200); money her family could barely afford.
No permanent disability
Seeing no improvement in her condition, Sakshi’s family took her to see an orthopaedic surgeon who referred her to the district hospital. Sakshi was finally diagnosed with
For one so young, Sakshi has had to endure a great deal. For a whole year, she experienced the painful effects of leprosy, missing out on her education and her childhood.
£30
could help fund a community health worker who can reach out to more people like Sakshi and help them overcome leprosy.
What’s more, her family had to pay for an expensive but incorrect treatment. However, after diagnosis and through our staff’s expert care at the Munger referral centre – Sakshi was treated in time to prevent any permanent disability setting in. Today, Sakshi has returned to the life she knew before. Happy with the results of her treatment, she’s gone back to school to continue her studies. Thanks to your support, her dream to become a teacher is once again within her grasp. Find out more about Sakshi on our website. Visit: www.lepra.org.uk/sakshis-story
“When I was diagnosed with leprosy my family were so worried. But now I am feeling well and confident. I have re-joined my school and hope to become a mathematics teacher when I am older.” Sakshi, aged 12
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Get fit and fundraise This year, Lepra’s supporters are pounding the streets, climbing on their bikes and getting involved in all sorts of activities to raise money for people with leprosy and LF. Here are just two of the highlights in a busy year for our fabulous fundraisers. was told what to do and where to go for treatment. A life of misery was avoided and in an instant our whole trip was justified.” Many thanks to the team for their extraordinary effort and to everyone who supported them along the way.
We want you for the Berlin Marathon The India Bike Ride 2016 At the start of this year, ten of Lepra’s biggest fundraisers packed their bags, boarded a plane and headed to India to cycle for Lepra once again. Hailing this as their last ever tour, the 10 took to the roads to ride in memory of their much-loved team members, Liz Kennedy and Bob Littledale, who sadly passed away in 2015. Once on their bikes, the team travelled through the district of Madhya Pradesh. Visiting schools and centres along the way, Sandra, Jane, Belinda, Celia, Nicky, Graham, Jenny, Miranda, David and Howard enjoyed a memorable trip. Most importantly, they raised Lepra’s profile throughout the region. “This was my first Lepra ride and I will never be the same again,” Graham said. “The kindness and comradeship within the team and supporters was surpassed only by the welcome we received from everyone we met in hospitals, colonies, streets and fields.
Why not dust off those trainers and run for Lepra? This year’s Berlin Marathon is coming up and it’s a wonderful opportunity to run through one of the world’s greatest cities while raising crucial funds for people affected by leprosy and LF. The event takes place on the 24th September kicking off at the Brandenburg Gate. Registration is £100, and once you’ve booked your place you could be racing round the Reichstag and breezing past the Berliner Dom for a great cause. Find out more at: www.lepra.org.uk/Event/bmwberlin-marathon-2016
Get in touch
If you’re taking part in a fundraising event for Lepra, let us know on 01206 216700 or email donorsupport@lepra.org. uk. You could be starring in our next newsletter!
“A highlight of the trip was when a passerby saw our t-shirts and van slogans and found the courage to show us the patches on his body and arms. The doctor diagnosed leprosy there and then, and the man
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Exciting news Toby Slay, a year 7 pupil from Lawrence Sheriff School in Rugby, was kind enough to donate his prize winnings to Lepra. Toby had won £40 in a Royal Mail letter-writing competition. After being inspired by a talk by one of our regional managers, Eileen Evans, he decided to give his cash to the cause. Thank you Toby!
Talented Toby donates his winnings
Meet you on the Mall
Lend your voice to Lepra
To celebrate Her Majesty’s 90th birthday this year, The Mall in London’s St James’s Park will be transformed into a giant street party for 10,000 people on Sunday 12th June. This memorable occasion will mark the Queen’s patronage of over 300 charities – one of which is us!
Do you know a choir that’s in tune with our mission to help those living with neglected diseases? By holding a fundraising concert for Lepra, choirs across the UK can help give a voice to people affected by disease, poverty and prejudice. Let us know the date of your concert and we can spread the word to help make it a resounding success!
The Patron’s Lunch will bring the celebratory weekend to a climax, and some of our staff will be there. Along with some of Lepra’s biggest supporters and teachers from the community, we’ll be putting on our finest and paying homage to our patron, so don’t forget to pop on your TV sets and see if you can spot us.
Get involved We are a small charity making big changes and we want you to be a part of that. Whether it’s giving us a tweet or your time, there are lots of ways to take part and make a difference – some you can do without even leaving your chair.
Leave a gift in your will Your loved ones will always come first, but even a small gift in your will could help change the lives of people trapped by disease, poverty and prejudice. For more information contact our Donor Support team on 01206 216700 or email donorsupport@lepra.org.uk.
Follow us on social media Spread our message and get tweeting, hashtagging and following so that we can raise more awareness. That way we’ll be able to improve more lives and lift more people out of poverty. Find us on Facebook, Twitter, LinkedIn and Instagram.
Join our team If you’ve got a big heart and lots of energy, we’d love to have you on our volunteering team. We have opportunities in our Colchester office as well as fundraising roles across the UK which allow you to turn your passion into action.
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) 2449/D/A