Spring 2021
LepraNews
lepra.org.uk
In this issue A letter from His Royal Highness The Duke of Gloucester History A life of sacrifice Partnerships update Patron: Her Royal Highness Her Majesty The Queen Vice President: His Royal Highness The Duke of Gloucester KG GCVO
Blue Peter appeal 25 years on
LepraNews
A Message
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from our CEO, Geoff Prescott
In this edition of Lepra News, we are focusing on the sacrifices made by people affected by leprosy. They may be forced to give up their jobs and their homes, forced to give up their families and their friends and forced to give up good health. For many people, this means they give up hope too. Over the last year the COVID-19 pandemic has meant that many of us have had to sacrifice things important to us. We are probably much better placed to understand the feelings of isolation that a diagnosis of leprosy can often bring. But once again, the people at the bottom of the forgotten rung, the people with leprosy both diagnosed or undiagnosed, are faring worst. Evidence now indicates that 60-80% of new cases of leprosy in India could be missed this year, with only 8,270 new leprosy cases reported between April and September 2020, compared to about 22,000 new cases reported for the same period in 2019; a decrease of 63%. Across 2021, we will ramp up our programme of early case detection in order plug this gap, to reduce transmission, promote well-being and ensure the rights of people affected by leprosy are attained. But to do that we need your continued support and hope that this edition of Lepra News inspires you to carry on giving, to help those people who need it most. Thank you!
Geoff
About Lepra Lepra is a non-governmental organisation (NGO), and has been working to find and assist people affected by leprosy since 1924. Following a leprosy diagnosis, Lepra offers a person centred holistic approach. This disease can lead some people to develop serious disabilities and may be subject to prejudice and discrimination. Our vision is a world free from prejudice and disability due to leprosy. We are secular; a positive decision to favour no one and everyone. We support people who are subject to the most neglect from existing services, as well as continuing to work with people who are not specifically marginalised or ignored.
Did you know? Someone is diagnosed with leprosy every 2 minutes! We prioritise being evidence-led. This culminated in the adoption of Dapsone after it was observed being used by veterinarians. Thus Lepra, working with the Indian Government, became the first to find and use a cure for leprosy. Today, being evidence led means a commitment to active case finding (ACF) and prioritising the follow up of those people who have completed multidrug therapy (MDT) treatment. Working closely with other agencies, we provide a range of assistance including physical and mental health support, psychological support, and social and economic advocacy to ensure the needs of the individual are addressed either by Lepra or other agencies.
Please find enclosed a letter to Lepra from
His Royal Highness the Duke of Gloucester KG GCVO The Duke of Gloucester is Lepra’s Vice President, and we were delighted to receive this letter to mark World Leprosy Day 2021. The past year has been difficult for all, and we were honoured to have The Duke’s support during this time.
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A time of great sacrifice Across millennia the sacrifices made by people affected by leprosy have been heart-wrenchingly severe.
The healthy children’s creche at Kumi leprosy settlement, Uganda
When we look through the archives at the different groups involved in Lepra, British workers who went overseas, sufferers who were asked to voluntarily move to settlements to receive treatment, children of sufferers who had to grow up in the settlements, we wonder who gave up the most in the fight against leprosy? The doctors and lay workers coming from Britain were certainly giving a lot up, possibly their homes, careers, relationships, all while heading into isolated places with demanding workloads. Similarly, people affected by leprosy gave up their community, their friends and sometimes, their family as they were forced to relocate to leprosy settlements for the chance of treatment. And what of the children? Some having contracted leprosy from their parents, others not, but both groups equally confined to the settlements. All of these groups had sacrifice in common. All of these people struggled. Those who travelled from Britain to help were pioneers in their field, throwing themselves wholeheartedly into making life for those people affected by leprosy better. They were involved in surveying the incidence of leprosy and trekking into unknown territories with minimal supplies to better understand the disease. Living conditions and facilities were of poor standard, which presented challenges in the provision of care for people affected. Despite that, they managed to bring healing, hope and a sense of independence to some of the world’s most vulnerable people. Some of the British workers, like Mr Herbert Boyd MBE, used their skills to create lasting change in the communities they visited. A trained aircraft engineer originally, Boyd used his experience to build an oil plant in Nigeria to help modernise the Itu settlement and make it more self-sufficient. Although the entrance to Itu became known as the ‘Gateway of Hope’, it was undoubtedly a source of unease to people in need of treatment.
Gateway of Hope, Itu But what of the sufferers who were asked to come to the settlements, far away from their families and communities? Well, it may be argued that their lives improved dramatically. Driven from their homes through fear and prejudice, they were often left destitute and isolated. Lepra presented them the chance to regain their voice and their dignity. They were empowered to lead full, meaningful lives with the opportunity to work, learn new skills and for some, receive the cure for leprosy!
“It is an extremely big thing for patients to leave the homes and villages where they were brought up, to leave the market and the social life, and voluntarily isolate themselves in villages” - Kay Davey, a British worker based in Nigeria in the 1950’s Today, we find people are still having to make similar sacrifices. That is why we are engaging at all levels to actively promote inclusion and confront prejudice to ensure the rights of people affected by leprosy will be attained.
LepraNews
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Feeding the hungry Lepra and St Francis Leprosy Guild join forces to protect the vulnerable. During the COVID-19 crisis, many people affected by leprosy lost their livelihoods and with little or no savings to fall back on, these families were on the verge of starvation. Lepra and St Francis Leprosy Guild quickly identified this serious threat and formulated an emergency plan to help those people at the bottom of the forgotten rung!
The project enabled the delivery of emergency kits containing dry food supplies and self-care/ hygiene kits. The team, comprising staff from both organisations, National Leprosy Eradication Programme District Officers and community volunteers, also provided people with important information about leprosy and the signs and symptoms of the disease. Lepra’s two Referral Centre’s, the St Joseph Leprosy Centre and Sendhwa Centre, were crucial for kit storage and for identifying people in need. With COVID-19 impacting people’s ability to travel, community information sessions such as these are vital for people with suspected leprosy, allowing them to receive an early diagnosis and immediate treatment.
Between December 2020 and January 2021, the partnership delivered a coordinated and collaborative response to 1,000 of the most vulnerable families in five districts across Madhya Pradesh, a large state in central India. In this state alone, the annual leprosy case detection rate is more than 15 per 100,000 people.
Effect:hope continues to support Lepra’s COVID-19 testing work In December 2020, effect:hope signed an agreement with Lepra to support the Blue Peter Public Health and Research Centre (BPPHRC) conduct mobile COVID-19 testing. The funding from effect:hope will enable Lepra to undertake outreach testing in rural areas and will cover personnel, vehicle and mobile testing equipment operational costs. Effect:hope is focused on ending the injustice of neglected tropical diseases like leprosy. Since 1982 they have been working with international partners to treat diseases that isolate people and cause discrimination and prejudice. They fund ground breaking research and provide ongoing care to people affected by leprosy. The project runs from January 2021 until June 2021, offering testing facilities to people at risk of COVID-19, with a special focus on the vulnerable such as people affected by leprosy. So far, Lepra has conducted 5,500 tests using our PCR equipment. COVID-19 testing at BPPHRC
With a combined experience of 222 years, Lepra and St Francis Leprosy Guild are well experienced in training health workers and volunteers who can reach out to poor communities to detect, treat and cure new cases of leprosy before the disease can take hold.
lepra.org.uk
World Leprosy Day
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& on track to beat
Lepra Rotary
Photo by Bill Waters
On 31st of January, the global leprosy community observed World Leprosy Day, coming together to appreciate the difficulties faced by people affected by leprosy. The day was marked across the world, with many high profile individuals supporting the day, such as Yohei Sasakawa, the WHO goodwill ambassador for leprosy elimination, and Alice Cruz, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy. One year ago, Lepra’s Vice President His Royal Highness, The Duke of Gloucester KG GCVO, spoke to our supporters about our work at the House of Lords, an event hosted by The Lord Gadhia.
HRH The Duke of Gloucester giving a speech about Lepra at the House of Lords (January 2020)
This year, and with COVID-19 impacting our ability to hold physical events, The Duke of Gloucester shared a special message, which is enclosed in this newsletter, in which he spoke of Lepra’s perseverance, dedication and hard work. Lepra’s relationship with the Royal Family is an important part of our history and this was highlighted on World Leprosy Day through a social media campaign in partnership with The Palace. Lepra’s work received international attention, with Director of Programmes and Advocacy, Paul Watson, featuring in a Bangladeshi television interview to highlight our important work there. You can watch the interview here youtu.be/xth-g9207_0 Our wonderful ambassador, Victoria Hislop, helped raise awareness for World Leprosy Day by conducting a series of radio interviews to highlight our work. Victoria spoke about the importance of Lepra’s vital activities, including active case finding, provision of mental health services and our current work assisting the Indian government with COVID-19 testing. Victoria’s support has been unwavering since she joined us as an ambassador in 2013 and we are forever grateful to her for her continued cooperation. You can listen to the interviews here youtu.be/pm1X3BT9kPo. These interviews were kindly sponsored by ION Industries Ltd (ionhq.co.uk), a Newcastle based accounting software supplier. ION and Lepra have worked together for a long time, and we are extremely grateful for their support on such an important day.
leprosy across India
In 2019, Lepra formed an alliance with the Rotary Clubs of Delhi South, Delhi Southend, New Delhi and Regency Next, with the objective of developing a robust programme to control leprosy in India. With disease control being a core mandate for Rotary International, the Rotary clubs in India are primed to raise awareness and generate social mobilisation on a significant scale, through the abundance of volunteers who will passionately pursue the cause. Leading the project from Rotary is Deepak Kapur, Rotary’s National PolioPlus chair for India and member of the Rotary Club of South Delhi and Himanshu Jain, member of Rotary Stratford London and key project spokesperson in the UK. Combine this gravitas with Lepra’s 97 years of experience diagnosing, treating and supporting people with leprosy, this alliance has the strength, purpose and vision for combating this most ancient of diseases.
Rotary in the UK We can speak at one of your meetings, both online or in person (restrictions permitting) and explain more about our cause including why early case detection is so important. By taking part in awareness and fundraising activities you will help us to reach even more people like Rayala (see page 8). We have already been invited to participate in the Bedfordshire, Buckinghamshire and Hertfordshire Rotary District 1260 Virtual Conference in March 2021, so please do get in touch with us today if you would like Lepra to be involved in your Rotary conference, by contacting LucyF@lepra.org.uk
Fundraising
LepraNews
Stuart Miles outside BPPHRC In 1996, Lepra was chosen as the BBC Blue Peter appeal for the year. Young people across the UK organised “Bring and Buy” sales, with the aim of raising £500,000 to help people affected by leprosy. Spanning several months, the campaign was so successful that a total in excess of £2.8 million was raised, one of the highest BBC Blue Peter fundraising appeals ever! One of the many ways this money was allocated included the launch of the Blue Peter Public Health and Research Centre (BPPHRC) in Hyderabad, India. Since then, the centre has been recognised as a Scientific Industrial Research Organisation (SIRO) by the Indian Department of Science and Technology with state of the art facilities. In 2020, it was mobilised in the fight against COVID-19, by studying the disease and providing testing for people in the community. School children across the country were instrumental in achieving this amazing achievement, working together to fundraise for a cause that still affects 600 people a day, of which 50 are children! Our ambassador Stuart Miles, and former BBC Blue Peter presenter who was involved in the appeal back in ’96, stressed the staggering generosity of young people.
Special invitation
“Seeing children get behind the appeal was remarkable, especially when we know that many of those children had never even heard of
One August Night reading by Victoria Hislop Join us for this online event hosted by Geoff Prescott, Lepra CEO, and Victoria Hislop, author of The Island and One August Night. An excerpt from One August Night will be read by Victoria Hislop, followed by a Q&A.
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Lepra celebrates 25 years since the 1996 Blue Peter Appeal leprosy before. What children are remarkable at recognising is injustice. Children see someone just like them and want to help!” he said. 2021 is the 25th anniversary of the original appeal and we want to reconnect with everyone involved at the time. So where were you in 1996? Were you hoping for a Blue Peter badge yourself or were you working hard behind the scenes so that your children might be awarded one? Please make contact with us and tell us your story so that you can once again help us to achieve our vision of a world free from prejudice and disability due to leprosy. • •
via email at lepra@lepra.org.uk give us a call on 01206 216700
Did you t in the Bl Appeal 2 ag
“When I look back at my time on Blue Peter there are so many highlights and experiences that I am so grateful for and things I never would have experienced otherwise, but ask me what am I most proud of and it will be those things that made a difference to other people’s lives,” Stuart said.
We’d l hear you
If you want to read more about our appeal and Stuart’s involvement, please visit lepra.org.uk/getinvolved/blue-peter-25-years-on
In 2020, we became more aware than ever of the importance of connection and kindness. In 2021, with this in mind, we want to remind you of our ongoing campaign to make Your Present, Their Future. Do you have a birthday coming up? Unable to celebrate with friends because of lockdown? Feeling like you need to make a difference but not sure how? Why not turn your day of celebration into a day of hope for people affected by leprosy? Your donation will go a long way towards changing people’s lives.
Date: March 2021 Tickets: £10
Please consider sharing your birthday with us by visiting our website:
For further details and to register your interest, please email KarinaN@lepra.org.uk
lepra.org.uk/get-involved/appeals/your-presenttheir-future
& Events lepra.org.uk
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Historical volunteers Lepra has a long and unique history, dating back to our foundation in 1924 by Sir Leonard Rogers, Rev. Frank Oldrieve and Sir Frank Carter. For decades, we have worked in many countries across the world, with doctors and volunteers travelling from the UK to assist country staff in endemic countries and creating lasting relationships with local communities and governments. John Michael Edwards was one such volunteer, who travelled to Malawi to help us. John lived in South Wales, visiting one of our wonderful supporter schools, Tonyrefail, many times with his trusty Springer Spaniel Sally, to spread the message of Lepra and the work we do! Tonyrefail Community School remains a loyal supporter since John visited all those years ago, and they recently told us how proud they are to support Lepra.
take part lue Peter 25 years go?
“Students in years 7 and 8 have taken part in a range of activities such as sponsored silences, car boot sales and no technology days. Students and teachers love to support this cause and have raised money that can help make a difference. We look forward to working with Lepra again in the future.” Tonyrefail CS
John’s fundraising in England as a layperson successfully secured the first Lepra land rovers for Malawi, which allowed staff to visit hard to reach, isolated areas easily love to and deliver treatment. John’s work ur story! with Lepra earned him an invitation to Buckingham Palace, where he was awarded a British Empire Medal for his commitment to fundraising for Lepra. We are incredibly lucky to have such wonderful volunteers in Lepra with much of what we achieve down to them.
WANTED
If you have a volunteering story from your time with Lepra, or have some interesting historical connection to us, please get in touch! Contact EleanorB@lepra.org.uk with your story and you could be featured in the next edition of Lepra News.
Reigate Grammar In November 2020 following a virtual assembly, the First Form at Reigate Grammar School raised an incredible £2,176.41 for Lepra by riding the virtual distance from Reigate to New Delhi – a staggering 6,777.97km over 4 weeks. The school also took part in a socially distanced 80’s inspired Zumba workout in December. Other brilliant fundraising ideas included Guess the Sweets in the Jar and using coppers to spell out tutor initials on the playground - every penny counts! Virtual assemblies have become part of our fundraising approach, and Lepra is eager to offer more schools this opportunity! If you would like us to organise a virtual talk at your school, please get in touch! You can email us at OliviaE@lepra.org.uk or call us at 01206 216700.
SAVE THE DATE Maria’s Island by Victoria Hislop
John Michael Edwards
Are you looking for a new challenge? Do you want meaningful experience in a charitable organisation? If so, we have the opportunity for you!
The children’s version of Victoria Hislop’s best selling novel, The Island, is due to be released in June 2021.
and even Buckingham Palace! Volunteering with us is a rewarding experience and we rely on our volunteers to help raise our profile.
VOLUNTEER We are seeking volunteers from across the UK to assist us with a wide range of activities, including fundraising, research, data collection, photography and social media activity! Being a Lepra volunteer can involve attending prestigious events in locations like the House of Lords, IWM Duxford
One of our current volunteers, Jane Hadcock, has been working closely with Lepra for several years and is responsible for our archive material, our museum and contributes to our fundraising and communications campaigns. For more information please contact OliviaE@ lepra.org.uk or visit lepra.org.uk/careers to view a copy of the volunteer job description.
lepra.org.uk
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Rayala: a story of hope lost and found. Rayala was diagnosed with leprosy in 2006, but his troubles continued for almost 10 years after his diagnosis. A leprosy diagnosis carries widespread discrimination and prejudice, often disrupting people’s lives, tearing families apart and causing immense stress and isolation for the people affected. Rayala developed issues with his left foot during treatment, resulting in muscle weakness; he was unable to walk properly. His fingers also began to claw and curl, and he was powerless to use his right hand. With the exception of his father, his family abandoned him because of these disfigurements. Rayala’s father died shortly after his diagnosis, leaving him completely alone, with no income and severe disabilities. His mental health deteriorated as a result of the extreme isolation. Rayala felt he had already been forced to sacrifice so much, in particular his dignity. He took to begging on the streets just to survive. His wider family refused to acknowledge him whenever they passed him, offering no support.
LEGACIES OF HOPE.
Thankfully, Lepra staff were in the local area, actively searching for new cases of leprosy. They spotted Rayala, who was in a very poor physical state and helped him, providing him with basic necessities, ensuring he had food and clean water while also assessing his disabilities. The team provided him with specialised footwear, enabling him to walk
unaided. He also began attending disability camps, where he learned how to care for himself and also how to tackle his mental health issues. Rayala was referred for reconstructive surgery on his hand, and he also underwent physiotherapy. Our holistic approach to treatment provided Rayala with many different ways to deal with his issues, including footwear, surgery, physiotherapy and mental health counselling. Rayala’s confidence increased tenfold; he even felt strong enough to became a mentor and educator, travelling to villages to discuss leprosy with residents and explain the signs and symptoms. He now works with Lepra, referring people affected by leprosy and lymphatic filariasis for treatment. He also helps others access government schemes and services for people affected by leprosy and campaigns for recognition of their rights. Despite having been forced to give up so many things in his lifetime, things you and I take for granted, with your continued support Rayala has completely turned his life around and is on his way to becoming a successful entrepreneur with his own shop, selling food and drink to his local community. Rayala wishes to take this opportunity to send a personal thank you for your ongoing support.
Every third person we help is from donations received through a gift in a will.
MENTAL HEALTH AND LEPROSY
Your Will is a testament to you and your beliefs. If you share our beliefs, you can help us to continue to diagnose, treat and rehabilitate people with leprosy, with the vision to one day beating the disease altogether. Order your free guide today by emailing lepra@lepra.org.uk, calling 01206 216 700 or visit:
In 2020, Guillermo Robert de Arquer, Lepra’s Head of Global Health, our former Programmes Manger, Jennifer Mangeard-Lourme, and Indian state coordinators, Rajni Kant Singh, Naveen Satle, Jayaram Parasa and Radhika Mamidi, worked on a cross sectional paper that looked at how people with leprosy and lymphatic filariasis (LF) are affected by depression and anxiety.
lepra.org.uk/get-involved/donate/a-gift-in-your-will
ARE YOU GIFT AID ELIGIBLE? Last year, Lepra claimed over £100,000 through the scheme, at no extra cost to our generous supporters. To find out how you can get involved, visit lepra.org.uk/get-involved/onlinegift-aid-form
This article serves to highlight the growing link between Neglected Tropical Disease’s (NTDs) like leprosy and LF, and severe mental health disorders. The paper has since been published in Leprosy Review, where it is available for download at leprosyreview.org/article/91/4/20-20027
Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG 01206 216 700 - www.lepra.org.uk - lepra@lepra.org.uk Registered charity number: 00213251