Lepra News September 2018

Autumn 2018

LepraNews lepra.org.uk

In this issue Help us recreate the success of our 1996 Blue Peter appeal!

Find out how your donation can go twice as far with our £1 from you, we get two! appeal, held this year to celebrate Blue Peter’s 60th birthday!

See how your support is changing lives in our Annual Impact Review 2017–18

Patron: Her Majesty The Queen

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LepraNews

Autumn 2018

Taking action to beat lymphatic filariasis

Spotlight on Lepra

In June, we travelled to Delhi for the 10th GAELF meeting to discuss new methods to ensure that more people are treated for lymphatic filariasis (LF). The Lepra delegation pictured from left to right: Maartje Pronk, Dr Aparna Srikantam, Naveen Satle, Dr Christiana Immanuel, Rajni Kant Singh, Ashim Chowla and Jennifer Mangeard-Lourme.

We recently opened our doors to welcome Councillors from across Essex. Attendees enjoyed a wonderful lunch, donated by Colchester restaurant Indian Ocean, while they learnt about Lepra’s history and how, thanks to supporters like you, we are continuing to tackle the stigma and disability caused by leprosy today. They also helped to launch our Socks and Sandals fundraising campaign.

Will Quince, MP said “Lepra is helping to empower people affected by leprosy and to provide them with the support to live fulfilling lives. Wearing socks and sandals is a fun way to raise funds, but also to make a serious point about the importance of bespoke, protective footwear.”

You can find out more about our Socks and Sandals campaign on page 4.

In this issue Page 3

A welcome from Geoff Prescott

Page 4

Get involved

Page 5

Fundraising stories

Page 6

The Blue Peter Research Centre continues to change lives – 20 years on!

Page 8

Komala and Akanksha’s stories

Join in the conversation on social media:

LepraHealthinAction @Lepra_HinA lepra lepra1 Pictured on our front cover is Jabbar from India. Read more about how his life was changed by a visit to the Blue Peter Health and Research Centre on page 7.

PICTURED:

Baron Michael Dobbs and Chair of Trustees, Charles Bland

An evening with Baron Michael Dobbs In July, we held an event in partnership with investment management firm, JM Finn to raise awareness of our work to beat leprosy. We were delighted to be joined by Baron Michael Dobbs, the author of House of Cards who participated in a Q&A session with guests.

Thank you to Sasja van Vechgel!

We’d love to thank photographer, Sasja van Vechgel, for supplying the Mozambique photos for our Spring Edition of Lepra News. Visit her website to see more of her work sasjavanvechgel.com

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Welcome to your Autumn edition of Lepra News!

I’m pleased to share with you that enormous progress has been made in leprosy case detection and treatment over the past year.

Over 18,500 people have been diagnosed with leprosy and treated by our staff in 2017-18, a thirty percent increase on the previous year.

Our intensified focus on leprosy, coupled with our enhanced methods of screening, have contributed to this achievement, yet we could not have accomplished this without loyal supporters like you.

Geoff with members of staff and beneficiaries in Bangladesh

We have also continued to expand health awareness activities and leprosy diagnosis training, to ensure communities and health workers recognise leprosy symptoms to ensure early diagnosis.

I recently visited the Indian state of Hyderabad, where I met two young boys, both affected by leprosy. Naveen, aged seven, was treated in the early stages and thankfully, he suffers no disability. Amar, aged 13, was diagnosed too late and he suffers disability in his hand as a consequence. We are providing him with the physiotherapy and reconstructive surgery he needs to return to a normal life. However, he is currently unable to go to school or play cricket – his favourite sport.

These cases highlight just how important early detection is in preventing life-changing disability. Our work helps to ensure that fewer children like Amar have to put their childhood on hold.

I would like to thank you for supporting children like Naveen and Amar. Without your help, our life-changing work would simply not be possible.

Setting sail with Voyages to Antiquity Geoff Prescott Chief Executive

We are delighted to announce our new partnership with luxury cruise line, Voyages to Antiquity, who offer exclusive cruises to places of historical and cultural interest. Together, we will be working to provide unique fundraising events on board specially selected cruises, along with other exciting opportunities watch this space for more details!

P.S. You can find out how your support has helped to transform lives across India, Bangladesh and Mozambique in our “Annual Impact Review” in the centre pages.

We would like to welcome Dinesh Dhamija to our Board of Trustees.

Dinesh is the founder, former Chairman and CEO of the travel site Ebookers.com. He has also founded two Indian charities SHIKSHA and CHIKITSA.

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LepraNews

Autumn 2018

Change lives, long into the future Did you know 20% of our funding comes from gifts in Wills? This generosity allows us to take bigger steps in the fight against this terrible disease.

By choosing to leave a gift in your Will, you can help ensure even more people receive the vital treatment and care they need long into the future.

Other ways to give ChariTable Bookings Book a table at one of the thousands of listed restaurants on ChariTable and if you select us as your chosen charity, for every person in your party, £1 will go to Lepra. Download the app or visit their website at charitablebookings.com

Give as you Live Give as you Live is an online fundraising platform that allows you to shop at 4,200 online stores and raise free funds for charity. Select Lepra as your chosen charity and we will receive a percentage of any purchases you make. It even works on sites such as Marks and Spencer and Waitrose! Visit giveasyoulive.com to find out more.

A Night at the Opera In support of World Leprosy Day and Lepra, Cantata Dramatica will be making a special performance of Perpetua at St. Stephen’s Church, London on Wednesday 30th January 2019. To reserve tickets or for more details, call 01206 216700.

Virgin Money London Marathon We want to thank our amazing London Marathon 2018 runners their hard work and dedication raised over £27,000!

To find out more, or to receive a copy of our legacy booklet, please contact our Donor Support team by telephoning 01206 216700 or by emailing donorsupport@lepra.org.uk

Hold a Socks & Sandals Day! One of the terrible consequences of undiagnosed and untreated leprosy is loss of sensation in the feet, which can lead to infections, foot ulcers and even amputation. To highlight this problem and raise funds, we have launched our Socks and Sandals campaign.

Turn what many consider a fashion disaster, into a fashion statement against leprosy.

All you have to do is wear socks and sandals for the day and donate to Lepra!

A donation of just £3 can supply a pair of protective sandals to someone disabled by leprosy, helping them to walk without fear of injury or prejudice.

Take up the challenge, post a photo of yourself wearing socks and sandals on Facebook, Instagram or Twitter and nominate your friends to do the same! Be sure to use the hashtag #SocksandSandals #BeatLeprosy and don’t forget to make your donation too!

Find out more at lepra.org.uk/socks-and-sandals

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lepra.org.uk

Our Annual Impact Review 2017 - 2018

301,000 We found, diagnosed and treated 18,500 people living with leprosy. That’s an increase of 30% compared with the previous year, thanks to enhanced active case finding and health awareness activities.

18,500

people affected by leprosy received reconstructive surgery to restore the movement and appearance of their hands and feet to reduce stigma and rebuild self-esteem.

135,000

263,000

We helped 263,000 people receive the disability grants and services they are entitled to from their governments. This support helps to reduce poverty, where leprosy and other neglected diseases have prevented a person from earning a livelihood.

1.7 million

30,000

We issued 30,000 pairs of protective footwear, enabling people affected by leprosy and LF to walk without fear of injury and lead a normal life.

436

We reached 301,000 people through diagnosis, treatment and care.

We trained 135,000 health workers, volunteers, community champions, school teachers and government health staff to help reduce medical misdiagnosis and ensure that people affected by leprosy are diagnosed in the early stages.

35,000

We trained 35,000 people affected by leprosy and lymphatic filariasis (LF) on how to manage their own care, so they can prevent infections in the areas of their body damaged by disease and reduce any further disability.

We reached 1.7 million people through health education and events to raise awareness of leprosy and other neglected diseases. This helps people to recognise their symptoms, seek diagnosis and get treatment and reduce prejudice.

School

Of the 1.7 million, 155,000 children were reached through health education within schools.

155,000

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Annual Impact Review April 2017 - March 2018

Our impact in the field India This year, our work in Bihar, Jharkhand, Odisha, Telangana, Andhra Pradesh, Madhya Pradesh and West Delhi has changed the lives of 186,600 people by providing diagnosis, treatment and care.

In four of these states: Bihar, Odisha, Andhra Pradesh and Madhya Pradesh, we have introduced combined leprosy and LF projects, leading the way as internationally recognised experts in this approach.

An update from Rachna

Reducing stigma and disability

Rachna Chhabra was diagnosed with leprosy in 2010.

Our work within communities has continued to build up leprosy knowledge and awareness whilst reducing the prejudice which leaves people at risk of discrimination, isolation and abuse. We reached over 373,000 people in India through community campaigns, helping to ensure they can now spot symptoms and access treatment without fearing the consequences.

“After my own leprosy diagnosis, I began to lose hope. I was irregular in taking my treatment and I isolated myself from my family and friends. Then I came into contact with Lepra, where I was counselled and given another course of multi-drug therapy (MDT) to ensure I was cured of the disease. Lepra does such amazing work to integrate a society that has been ignored. I now work for Lepra, where my role is to ensure that people are aware of the support that is available to them. I really am very proud to be able to help other people like myself.”

We have continued to provide self-care training and protective footwear to support those where disability has impacted their lives. In total, we have provided footwear, self-care kits and other disability aids to 44,600 people in India to help them reduce infections and injuries and improve their mobility.

Beyond our delivery of health care services, we have successfully empowered over 263,000 people to advocate for their basic rights and claim government benefits to which they are entitled.

Did you know..?

21% of our staff have been directly affected by leprosy or LF. WEST DELHI

ODISHA

TELANGANA

Pictured: Every sandal we make is carefully customised to fit each individual and support their needs.

India carries two-thirds of the world’s leprosy burden.

The 2017 report by the World Health Organisation also states that leprosy cases in India are at their highest for 10 years.

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Mozambique

Bangladesh This year we have reached 113,900 beneficiaries through diagnosis, treatment and care across the districts of Bogura, Natore, Sirajgonj, Pabna, Dinajpur, Lalmonirhat, Kurigram, Sylhet, Maulvibazar, Habiganj and Sunamganj.

LALMONIRHAT

KURIGRAM

DINAJPUR

ZAMBEZIA PROVINCE

SUNAMGANJ

SYLHET

BOGURA NATORE PABNA

SIRAGONJ

MAULVIBAZAR HABIGANJ

Access for everybody In Bangladesh one of our key focuses has been to provide screening and support to marginalised communities. These localities are often neglected from mainstream health services as they are located long distances from medical facilities.

Of the people we reached this year, 98% were from vulnerable and marginalised groups, and 10% of these were living in indigenous communities. In total, over half (54%) of the people we supported were living in extreme poverty, meaning they do not earn enough each day to sustain a healthy level of nutrition. Our work within these communities is imperative to ensure that these most vulnerable people have access to the healthcare they desperately need.

Community Champions We trained over 1,100 Community Champions in Bangladesh, 39% of these had been affected by leprosy themselves.

Our Community Champions raise awareness of leprosy within their communities, screen for potential cases and refer for diagnosis. Throughout the year, our Community Champions found 18% of all leprosy cases we diagnosed in Bangladesh and met over 46,000 people through their awareness raising activities.

The gender gap Women in Bangladesh, and many other developing countries, still face barriers which prevent them from seeking medical treatment for leprosy. These include cultural practices and beliefs which mean they must be accompanied by, or receive permission from, a male family member when visiting a doctor and they also cannot be examined by a male doctor.

Women often prioritise their families and household responsibilities over their own health. It is common for the initial symptoms of leprosy to be misinterpreted by women and their partners as a minor skin complaint which means treatment is only sought after disability occurs.

Our female Community Champions break down these barriers; they can visit women alone in their home, removing the need to travel long distances, and discreetly provide advice and diagnosis.

This year, over 400 of our newly trained Community Champions were female, allowing us to access more women and provide early treatment to help avoid disability.

Alongside our partner, Netherlands Leprosy Relief (NLR), in 2017-18 we reached almost 500 people through diagnosis, treatment and care in the Zambezia Province.

Over 7,200 people were taught about the symptoms of leprosy and other neglected diseases.

We also began a new project in partnership with NLR and the Adventist Development and Relief Agency which will run until 2020. This project, aims to provide 5,000 people in affected communities with agricultural training to improve their nutrition and earn a livelihood. 300 of these beneficiaries will also be supported with treatment and care for leprosy and disability.

Pictured: A Community Champion examines a man in the Tea Garden district, checking for signs of leprosy

Image credit: Sajsa van Vechgel

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Annual Impact Review April 2017 - March 2018

Did you know?

Where your donation goes Where our income came from Total income £5,272,189 Public support £3,039,647 Trusts and business £127,849 Statutory grants and charitable acts £2,053,241 Sales, investments and other £51,452

88p in every £1 directly funds our projects. The remaining 12p helps us to bring in the next £1.

How our income was spent

Our supporters We have received over £3 million from individual donors in 2017-18. This amazing sum has enabled us to continue our work to find, treat and rehabilitate people affected by leprosy so they can transform their lives.

Our fantastic supporters have taken part in so many different fundraising activities to improve the lives of people affected by leprosy. A total of £637,050 has been raised through community fundraising activities, with over £500,000 coming from the support of school students!

Total expenditure Charitable expenditure: projects, programmes, research, education, etc.

Fundraising

£5,516,552 £4,828,715 £687,837

The financial information has been audited and will be presented to Lepra’s Board of Trustees in September 2018.

Corporate partnerships Pavers Shoes funds one of our mobile footwear vans that travels across Bihar to deliver custom-made sandals to people affected by leprosy and lymphatic filariasis (LF).

The sandals, which are designed, made and fitted by our specialist footwear technicians, help people to go about their daily lives without the threat of injury, infection or prejudice.

In 2017-18, the van travelled over 4,300 miles and provided protective footwear for over 2,500 people.

The students from St Mary’s Colchester raised £3,545 with races, sweet sales and school sleepovers!

If you’d like Lepra to visit your group, school, university or organisation to demonstrate how your support can change lives, please get in touch!

Haddenham Healthcare, West Suffolk NHS Foundation Trust and Ipswich Hospital NHS Trust provided compression garments to help alleviate swelling caused by LF. These garments were given to 215 beneficiaries in India, helping to improve their mobility.

In 2018-19, we need to raise £5.5m from our supporters, including major donors, corporates, groups and associations, trusts and foundations, schools, colleges and universities, fundraising events and challenges. This will ensure that we can continue to provide the support, care and assistance so desperately needed in India, Bangladesh and Mozambique.

Lepra, 28 Middleborough, Colchester, CO1 1TG Tel. +44(0)1206 216700 lepra@lepra.org.uk www.lepra.org.uk Patron: Her Majesty The Queen Registered Charity Number 213251 (England and Wales) SCO39715 (Scotland) Lepra is a company limited by guarantee, registered in England and Wales. Registered Number 324748

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Fundraising stories

Edinburgh to St Andrews cycle ride update

Swimming the length of the Channel

It’s been a few months since our cyclists rode the 68 mile track from Edinburgh to St Andrews – one of the oldest cycling events in Scotland. We’d like to say thank you to all who took part and raised money to support people affected by leprosy.

The students of Winchester House School recently swam the shortest length of the Channel to fundraise for Lepra. In only one hour, they collectively covered over 20 miles and Have you raised a fantastic been inspired by £4,797!

Keep an eye on our website in early 2019 to register for next year’s event.

of thank The biggest Fagence id yous to Dav ed Lepra

ort ce has supp David Fagen ing and lle rs by co ct a ye 0 4 r ve for o ating the ps, then don to his selling stam epra. Thanks L to d e is ra funds s raised an pport, he ha dedicated su the years. “I 0,000 over amazing £4 ong Kong leprosy in H came across colony. It’s ed a leprosy it is v I re e h w and I feel hwhile cause rt o w lly a re a ering who are suff le p o e p e th for .” adful disease with this dre

our amazing fundraisers?

Get involved! You could host a pub quiz, a golf day or another fun event to support people affected by leprosy!

Visit lepra.org.uk/ fundraising-guide for more ways to get involved

Going technology free to beat leprosy!

Elina Burrha, from the Rochester Grammar School in Kent went without technology for a whole week to fundraise for people affected by leprosy. She raised over £550 in total, which is enough to screen 110 schools for leprosy, to help detect cases early.

Ye Old Medieval Fayre Our fabulous supporters from the Knights of Medway joined us at the Medieval Fayre in Colchester Castle Park in June. Leprosy is a disease often associated with the medieval period, so we spent the weekend in costume to raise awareness that leprosy still exists. Not only did we raise £300, which can fund 100 self-care kits, but the event was a great opportunity to raise the profile of our work and the fact that leprosy is still destroying millions of lives today.

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LepraNews

Autumn 2018

The Blue Peter Research Centre continues to change lives – 20 years on!

The Blue Peter Health and Research Centre (BPHRC) is located in a peaceful suburb of Hyderabad, India. It was funded by the fantastic fundraising efforts of Blue Peter viewers, their families, and supporters like you, during Blue Peter’s Lepra appeal in 1996.

Over the last 20 years, the centre has helped us to treat and care for almost 4 million people and its policy-shaping research has changed the scope of leprosy detection in India. Today a dedicated team of 18, including clinical and research staff, continue to work to improve the lives of thousands of people affected by leprosy every year.

The centre is recognised by India’s Ministry of Health and has influenced new models of healthcare, including pioneering community screening programmes and providing increased access to care in marginalised communities.

Did you know?

The Blue Peter Appeal for Lepra in 1996 was one of the most successful appeals of all time. It raised £2.8 million through ‘Bring and Buy’ sales across the nation!

Our UK office staff opening the thousands of letters we received in 1996

These vital contributions have helped us to increase the number of people we find and treat in the early stages of the disease, particularly those living in rural areas, far away from healthcare facilities.

BPHRC also serves as a referral centre, diagnosing leprosy cases, treating reactions and issuing multi-drug therapy and protective footwear. In addition, it acts as a training facility to ensure that medical staff have the knowledge they need to spot leprosy symptoms and reduce misdiagnosis.

Stuart Miles presented Blue Peter at the time of our appeal. He visited the Blue Peter Health and Research Centre when it first opened in 1999.

“Filming the appeal was emotional, shocking and life affirming all at the same time. The people we met, including many children who were living with leprosy, had a huge impact on me and their stories and images were so powerful. We knew this was a message we had to get out there and that the children of the UK would respond to it, which they did in their thousands.

The Bring and Buy kits were being sent out in their hundreds so we knew it was going to be a large total. I don’t think anyone could have predicted the final amount, £2.8 million. I felt so emotional and proud to have been a small part of something which engaged children and young people to make a difference to the lives of people with leprosy around the world.”

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Support our ‘£1 from you, we get two!’ appeal In October, Blue Peter will celebrate its 60th birthday. To celebrate this milestone and the success of the 1996 appeal, we’ve received pledges to allow us to double the first £50,000 donated to our ‘£1 from you, we get two!’ appeal.

All you need to do is donate between 9am on 24th September – 5pm on 24th October.

Donations can be sent to us by completing a Lepra donation form; we can also double donations received over the telephone, online or in person via our Colchester office, or our team of community fundraisers across the UK. Your donations can help us continue the vital work of BPHRC and support our work across India, Bangladesh and Mozambique – and if we receive your donation within the timeframe, your donation can have double the impact, at no extra cost to you!

For more information, visit our website: lepra.org.uk/1-from-you-we-get-2 or call 01206 216700.

Jabbar’s story Thanks to BPHRC, Jabbar was able to recognise his leprosy symptoms and to seek the vital treatment he needed.

When Jabbar was 10 years old, he discovered discoloured patches on his skin. He visited a local clinic but when the staff prescribed him ointment and asked him for money, he decided not to go back.

Luckily a few months later, when Jabbar was playing outside, he heard a member of the BPHRC team conducting a community health awareness campaign, explaining the symptoms of leprosy via a loud speaker. On hearing the message, he walked over a kilometre from his village to BPHRC. We diagnosed Jabbar with leprosy and provided him with the multi-drug therapy treatment at no cost.

Now aged 28, Jabbar is cured and has no disability. He now has a wife and two daughters and still returns to the centre whenever he or his family have any health concerns.

Dr Aparna Srikantam is Head of Research at BPHRC and has worked at the centre for 16 years.

“Over the years, BPHRC has become a well-known and reputable research facility. Its research has led to innovative leprosy diagnostic methods and new ways to treat nerve damage. It has gained academic and scientific recognition for research, where it has achieved 100 intellectual patents. Today, the centre is making some exciting developments in leprosy treatment and care. These include methods for leprosy case detection and alternatives to antibiotics in dealing with ulcers.

Every day, I am proud of the centre’s work due to the significant milestones we have made in the treatment and care of people affected by leprosy. Funding is vital so we can continue to achieve milestones and reach a day when leprosy no longer exists.”

It’s thanks to supporters like you that the Blue Peter Health and Research Centre is able to provide the vital outreach, research and treatment to thousands of people like Jabbar.

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LepraNews

Autumn 2018

The legacy of our Blue Peter appeal BPHRC has helped us to treat and care for over 200,000 people every year; here are just two lives that have been transformed thanks to the work of the centre.

Akanksha’s story

Komala’s story

In 2005, when Akanksha was only four years-old, discoloured patches appeared across the right side of her face, her left forearm and right leg.

She lived with her symptoms for a year before her uncle brought her to BPHRC where we diagnosed her with leprosy. Three years earlier, her father had received the same diagnosis.

When 23 year-old Komala developed blisters on her fingers, she visited a traditional healer near to her tribal community in Telangana.

She was prescribed ointment, but her symptoms did not improve, instead they began to worsen.

Our staff at BPHRC quickly issued Akanksha with multi-drug therapy (MDT) treatment to cure her and her patches began to fade.

Thankfully, due to early diagnosis, she did not develop any disabilities and has been able to lead a normal, healthy life.

Today, Akanksha is 17 years-old and there is no physical evidence to show she ever had leprosy. She is now at high school and is working very hard to achieve her dream to become an engineer.

Remember!

If you make a donation between 24th September – 24th October, your donation can be doubled at no extra cost to you.

After months of uncertainty, Komala was diagnosed with leprosy by a private clinic, however, she developed reactions to the MDT, which included the appearance of nodules on her face. After months of living with these reactions which also caused severe pain and fevers, she was finally referred onto BPHRC. By this time she was experiencing depression and anxiety, and concerned for her health, she had started to lose hope.

“I wept bitterly,” she said, “All I could ask was ‘why should I suffer from this type of disease?’ I had no interest to live”.

Not only did Komala have worries about her health to contend with, but she also endured heartbreak as her husband chose to divorce her due to her leprosy diagnosis.

She moved back to her family home with her parents and her husband re-married soon after.

Our team supported Komala, providing her with counselling to improve her emotional well-being in addition to treating her reactions to MDT. Thankfully, one year on, Komala is no longer experiencing reactions and is cured of leprosy. Her mental health has also improved. Komala continues to receive support from BPHRC, when needed, to help her build a healthier, happier life.

Komola’s name has been changed to protect her identity, and she has asked that we do not include a photograph of her.

Lepra, 28 Middleborough, Colchester, CO1 1TG Tel. +44 (0)1206 216700 Fax +44 (0)1206 762151 lepra@lepra.org.uk lepra.org.uk Patron: Her Majesty The Queen Registered Charity Number 213251 (England and Wales) SCO39715 (Scotland)