LepraNews Spring 2022
United for Dignity Breaking the Cycle of Prejudice and Discrimination
Introduction from Lepra’s CEO Jimmy Innes
The Historic Impact of Prejudicial Laws
www.lepra.org.uk
The Integration of Support for Mental Health Patron: Her Royal Highness Her Majesty The Queen Vice President: His Royal Highness The Duke of Gloucester KG GCVO
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An introduction by
Jimmy Innes
Lepra’s new CEO commenced in post in January 2022, he talks with us about his experiences in joining the Lepra family.
I am delighted to be writing this introduction to the latest edition of Lepra News, as the new CEO of Lepra.
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’ve been in post for a couple of months now, and everything I have learned so far about our work has been very impressive.
From working with district health authorities in Bangladesh to strengthen local leprosy services, to playing a leading role in the provision of COVID-19 testing and vaccination services for people affected by leprosy in rural India, alongside the facilitation of community-based self-care groups. We see in this issue how Lepra’s self-care groups play an important role in providing a safe haven, where people affected by leprosy can talk freely with peers, without prejudice or discrimination, and with a collective voice to break down the barriers in society. And I am still learning every day. About leprosy, lymphatic filariasis (LF) and the holistic, person-centred care our healthcare experts on the ground provide for those who need it most. I am also learning about the challenges that we need to rise to, and how we can best overcome them in the months and years ahead. I am excited by knowing that even the smallest aspects of our work, have
a magnitude greater than that we can possibly imagine. Everyone I have met and spoken with here at Lepra, has made me feel very much at home, and this is my overriding impression from my early days here: Lepra is a strong family, made up of many like-minded individuals, working with common purpose and dedication, wearing our mission proudly on their sleeves, and striving to reduce transmission and the physical, psychological, social and economic impact of leprosy and LF. One of the highlights from my first month was World Leprosy Day on 30th January. We marked the day with a media campaign to raise awareness of leprosy, here in the UK and internationally. The theme this year was ‘United for Dignity’. The campaign honours the lived experiences of individuals who have experienced leprosy by sharing their empowering stories. We find out more about the impact of poor emotional health, caused by exclusion and prejudice in their homes, communities and society at large. People who have the right to a dignified life, free from disease-related discrimination. It’s a privilege and an honour to become part of the Lepra family, advocating for such an important cause. I am excited by the journey ahead of us as Lepra, as we work to do more to achieve our vision of a world free from prejudice and disability due to leprosy.
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epra was founded in 1924, working to diagnose, treat and rehabilitate people with leprosy. It spearheaded active case finding and outpatient work in order to reduce the incidence of disability due to nerve damage resulting from delayed diagnosis.
economic empowerment, innovative aids, data disaggregation, women and girls and assistance in humanitarian contexts, all drew upon our internal strategic thinking and operational work. Thanks to our person centred approach, we have made progress in all the areas in which we made a commitment and this has been reported back to the organisers of the 2022 summit.
The 2022 Global
In 2018 Lepra attended the London summit and, together with another partner, CBM (The Overseas Christian Disability Charity), we facilitated the travel of Mr Nagabushanam, a man affected by LF, to address summit participants on the realities of living with severe disability caused by this disease.
Disability Summit
The commitments that we made in 2018, on prejudice and discrimination, inclusive education,
This year, Lepra has identified new commitments which most closely resonate with our organisational aims and which are within our means to deliver. Our commitments focus on ‘Inclusive Health’ and the ‘enhanced meaningful engagement of organisations of persons with disabilities’. Key in responding to the call of people affected by leprosy and LF that there should be “Nothing about us without us!”.
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A very special
THANK YOU
Highlighting the amazing efforts of our incredible supporters and ambassadors across the UK and further afield.
Challenge
Always
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Completed!
ver the last 12 months, Lepra’s ‘Challenge Ambassidor’ Tom Barton has been running a marathon a month in support of Lepra, totalling a phenomenal 1724 miles and raising over £2300! “I’ve been overwhelmed by messages of support and kind words. There’s been highs and lows with both mental and physical tests, but some great memories too.” If you would like a much coveted place in the 2022 London Marathon, visit our website NOW! We have 10 places to fill. With Tom as your mentor, he will provide remote training sessions, including hints, tips and tricks to support you on your journey.
Happy to Help
epra received a request in November, that we were only too happy help with. David (pictured) was looking for an unusual gift for his wife Gina. Gina fondly remembers fundraising for Lepra whilst at school, and the much sought after T-shirt, given to the student that raised the most. Unfortunately, the T-shirt went to someone else but David’s plea for help was heard by our team. Searching our digital archives, we located the artwork and David was able to provide Gina with a unique Christmas gift which we understand she was delighted with! A massive thank you to Gina for her amazing fundraising efforts all those years ago and to David for getting in touch!
lepra.org.uk/events
If you have fond memories of past fundraising efforts for Lepra, please do get in touch!
Dancing for
£1 from you...
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Lepra
est selling author and Lepra ambassador Victoria Hislop, has donated her appearance fee from the hit Greek TV show ‘Dancing with the Stars’. Victoria is a long-term supporter of Lepra and is an important advocate for people affected by leprosy. Since the success of ‘The Island’, her first novel set in a leprosy colony on the island of Spinalonga, Crete, Victoria has been a familiar face in Greece and was granted Greek citizenship two years ago. “It was a wonderful opportunity, I love dancing and I am an addict of the Saturday night series Strictly Come Dancing on the BBC. Visit our website to read Victoria’s brilliant account of her experience on the show! lepra.org.uk/news/article/dancing-for-lepra
We Get Two epra launched its match funding appeal ‘£1 from you, we get two’ appeal on Giving Tuesday 2021.
Thanks to our incredible supporters and donors from the UK and across the world, we are pleased to announce that we have had an unprecedented response, which has surpassed our expectations. With your kindness and generosity the pledge pot has grown to an astonishing £79,000, enabling us to double donations since November. The total raised currently stands at over £174,000! 91 pence in every pound goes directly to our programmes and services, enabling us to support the world’s most vulnerable people, and bringing us a step closer to beating leprosy.
THANK YOU
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World Leprosy Day
United for Dignity World Leprosy Day is undoubtedly the most significant date in Lepra’s calendar.
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or World Leprosy Day 2022, Lepra highlighted the discriminatory laws, social exclusion and systemic prejudice surrounding leprosy, which for many people, is a major contributing factor in treatment hesitancy, which can result in serious and permanent disability.
across a range of networks which is available as a podcast on our website, via the link below.
Raising awareness of leprosy and the issues surrounding the disease, is a crucial element of Lepra’s work. As a neglected tropical disease (NTD), World Leprosy Day serves as a focal point, a day where we can look back at the incredible progress made in the fight against leprosy, but also as a reminder of the challenges people still face.
“We’re calling for dignity, to honour the dignity of people who experience leprosy; to lift up their voices and honour their experiences and to recognise the challenges they face. It’s a call to arms to come and join us and unite for the dignity of all people affected by leprosy.”
‘United for Dignity’ is the theme for 2022, a recognition of the need for mental and physical health equality and a call for unity for people affected by leprosy. A fitting theme, and one that the whole world can empathise with following the COVID-19 pandemic. While many of us are able to return to life as normal, free from the constraints of social distancing and isolation, World Leprosy Day is a reminder that for those affected by leprosy, the harms of health-related discrimination and social exclusion continues to impact the world’s most vulnerable people. As part of Lepra’s 2022 awareness raising campaign, we are asking our friends and supporters across the world to leave messages of unity on our online message board: www.mub.me/Xls. Although a seemingly small action, our call for unity and understanding is representative of our call for a cultural shift, keeping leprosy in our collective consciousness and helping to make leprosy a disease of little consequence. In January Lepra’s CEO, Jimmy Innes was joined by Victoria Hislop for a series of radio interviews,
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he International Leprosy Congress (ILC) brings together key stakeholders in the field of leprosy. At the last ILC held in Manila Philippines in 2019 the baton was handed over to India to hold the next congress in Hyderabad.
Both Jimmy and Victoria spoke about the work of Lepra in India and Bangladesh, focusing on the emotional impact of leprosy and the journey ahead for the organisation. Jimmy explained:
Victoria spoke about her own experiences of visiting historic and existing communities affected by leprosy: “Spinalonga made me realise that these were ordinary people who’d had the misfortune to pick up this mildly infectious disease which for millennia was totally incurable.” To listen to the podcast with Victoria and Jimmy, to watch our appeal video and to leave your own message of unity, visit our website here:
lepra.org.uk/get-involved/appeals/worldleprosy-day-2022-united-for-dignity-appeal Diagnosis and Improved Care’, very in-fitting with Lepra’s aims and ethos, and particularly pertinent as Lepra will be also celebrating the 25th anniversary of the Blue Peter Public Health and Research Centre (BPHRC), located in Hyderabad.
The 21st International
In view of the prevailing COVID-19 situation the congress will be held as a hybrid congress in November with about 500–1000 physical delegates and unlimited possibilities for e-delegates. There will be an opportunity for more than 100 hours of scientific deliberations.
The BPHRC was established from funds raised by a ‘Blue Peter’ appeal, with a state-of-the-art facility to undertake applied biomedical research in the disciplines of clinical, immunology and molecular biology aspects of leprosy. The BPHRC works closely with clinics and outreach programmes across multiple regions in India endemic to leprosy and LF.
Leprosy Congress
The theme for 2022’ is ‘Better Knowledge, Early
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The Historic Impact of
Prejudicial Laws
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Over 100 laws still exist across the globe which discriminate against people affected by leprosy.
reated decades or even centuries ago; these laws continue to marginalise people affected by a disease that has been curable for over sixty years now. Whilst many countries are working on repealing these prejudicial laws, the impact they create on both mental and physical health continues to burden people affected by leprosy. The reality of these laws, such as those allowing for the segregation of people who have leprosy, mean that they are cut off from their everyday lives. For children, it may mean they can no longer attend school. It also removes any way of opposing the enforced isolation. This is why recognising the advocacy needs of people is such an import part of Lepra’s work. Today, we look back to the 1960s and find out just what these laws meant for people affected by leprosy; to have rights, dignity and well-being removed. The little girl in the photo; her hair decorated with flowers and her neat dress, was clearly wellcared for. Her name was Amara and she was 12 years old at the time. However, Amara was not always this fortunate. Living with a highly infectious form of leprosy, the orphaned child spent her days alone in a small, dark hut on the outskirts of her village. Each day, her sister, on her way to work in the fields, would leave her with nothing but a bowl of rice. Denied all human
companionship because she was affected by leprosy, this abandoned and neglected child spent her life suffering from physical and mental pain. Lepra stepped in; treating and settling her under the Child Adoption (Sponsorship) Scheme, allowing donors in Britain to fund the in-patient treatment of young children overseas. The photo is from this period of time when she was looked after; cured of leprosy, her disabilities cared for and her mental well-being supported. As soon as Amara was well enough, she would have joined children of her age group in school, experiencing friendship and support for perhaps the first time. After a year or two she would be well enough to return to her sister and her community.
If her brothers or sisters developed leprosy, Lepra would be able to intervene early due to their awareness of Amara’s casepreventing long term damage to both their physical and mental health. Seeing children like Amara flourish in sympathetic communities led Lepra to the development of programmes in place today. Counselling by peers, support from others with similar experiences and care from within communities continue to be vital pillars of our work, such as our Mental Motivators project. Lepra supports those who are subject to the most neglect from existing services, as well as continuing to work with those who are not specifically marginalised or ignored. Like Amara; if her legal rights had been protected perhaps her segregation may never have happened. Her distress, not only caused by her disease, but also by her profound isolation at so tender an age, was unacceptable. Advocacy, to change the laws that continue to allow this treatment, is key to changing the perception of leprosy and protecting the people affected by it. During 2022 you can advocate for people living with leprosy across the world by leaving a message of support, friendship or hope for the future. To read more about Lepra’s long history of supporting the world’s most vulnerable people and giving a voice to those who need it most, visit our website to find out more:
lepra.org.uk/ news
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The Integration of Support for
Mental Health In this issue of Lepra News, we have called for unity; unity for people affected by leprosy.
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n particular, we have sought to shine a light on the prejudice, systemic discrimination and social exclusion surrounding leprosy, and the subsequent effect this has on people’s emotional health. Over the last 5 years, Lepra has pioneered a more holistic, person-centred approach to our medical and care services overseas. Our research, and development of new programmes has contributed to a global change in the understanding of mental health and the impact this has on the treatment and recovery of neglected tropical diseases (NTDs) such as leprosy. In 2018, Lepra conducted a study, bringing together the research carried out in 20 articles investigating mental health and leprosy. They were selected for their relevance and scientific validity. All studies systematically showed a higher prevalence of mental disorders among people affected by leprosy than in the general population. Depression was the main mental health concern affecting people with leprosy. Studies conducted in India, Ethiopia, Kenya and Thailand found a prevalence of depression amongst people with leprosy ranging from 10% to 76%, with a majority erring towards 50%. Studies also indicated that anxiety, although coming second behind depression, was significantly higher amongst people with leprosy, affecting around 20% of them. In a study conducted by the University of Tokyo (featured in Leprosy Review - leprosyreview.org) in Bangladesh, the state of depression of people with leprosy was strongly influenced by disability grades (with higher grades correlating with greater depression) and by direct experience of prejudice and discrimination. The level of disability
rather than the time spent with leprosy seems to be a better predictor of poor mental health. Gender was also highlighted as a risk factor, with women being more vulnerable to mental health issues than men. A study by the All India Institute Of Medical Science, found a high proportion of psychiatric illness amongst leprosy patients (76% of the patients, with 55% having neurotic depression and 21% anxiety neurosis). It was conducted with displaced leprosy patients in India. In addition to displacement being underlined as a risk factor, the study also showed that being single, unemployed and having visible disabilities was also associated with more psychiatric symptoms. Leprosy and lymphatic filariasis (LF) interventions are often complex and include long-term treatment such as self-care. Without a mental health component directly integrated into LF and leprosy interventions, we have seen that adherence to the treatments necessary to the prevention of disability, can be problematic for many people. In short, integrated mental health support leads to improved physical health outcomes for people affected by leprosy and LF. The result of Lepra’s research has led to the advent of a more holistic approach, and a greater acceptance of our person-centred principles. This has had an immediate effect on the design and implementation of Lepra’s programmes and treatment plans in India and Bangladesh. The success of the ‘Mental Motivators’ programme in Bangladesh, funded and supported by Baillie Gifford since 2019, now serves as a blueprint for our approach to holistic care and is being adopted further afield. Core to the programme’s success is
The approach is to recruit and train leprosy affected people from targeted geographies to deliver basic mental health support and therapeutic techniques within their own community, often using our existing self-care groups as a platform. To be listened to by a trusted person, with genuine empathy and understanding, can make a crucial difference and can help break the cycle of isolation and prevent the spiral of emotional health difficulties which inevitably impact people’s physical recovery. As an extension to Lepra’s ground-breaking Mental Motivators programme, the project has now been expanded to 7 highly endemic districts in northern Bangladesh, and is known as ‘Proshanti’, meaning ‘tranquillity’. The project is enabling 110 self-care groups with around 1100 members receive practical physical and emotional support around the self-management of leprosy and LF.
Proshanti October to December 2021
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Districts in Northern Bangladesh
More recently, a new initiative in Madhya Pradesh called ‘Samarth’, extends the concept to new geographies. Funded and supported by Canadian charity Effect Hope, Samarth will create and support over 100 self-support groups (SSG’s) within three blocks of Chhatarpur District: Rajnagar, Gaurihar, and Luv-Kush Nagar.
110 1100
People received counselling
Across the project, we will be providing a comprehensive self-care package for people affected by leprosy or LF, which includes; monthly meeting for SSG’s, training and support on self-care for skincare, wound care, exercise, and footwear, essential health counselling such as symptom recognition and awareness-raising for positive mental health.
550
Over the last quarter, the programme has delivered 55 group sessions to 550 members. Over 500 people have also received counselling in the same period. In addition, nearly 900 people affected by leprosy and LF have also been fully vaccinated against COVID-19, under Lepra’s vaccination programme.
Impact Report
550
the accessibility of support and the promotion of positive mental health.
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To read more about mental health and the studies that underpin our work in this area, please visit our website:
lepra.org.uk/what-we-do/mental-health
Self-care groups supported Self-care kits provided
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Attended Training in October
885
In addition, we will introduce mindfulness exercise or peer counselling into two of the blocks at their monthly meeting which will have a positive effect on the mental health of SSG members. We expect to reach at least 1,500 adult men and women affected by leprosy or LF, who will form the 100 self-support groups. SSG’s will become a community source of awareness around the two diseases and 100 Accredited Social Health Activists (ASHAs) will be trained to support the SSGs in their local community.
Members 311 Men 789 Women
COVID-19 vaccinations provided
Funded and Supported by Baillie Gifford
LepraNews
A lifetime of
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Kindness Following on from the success of Lepra’s match funding appeal ‘£1 from you, we get two’, we shine a light on the extraordinary generosity and kindness of Lepra’s long-term supporters. Supporters like The Readers.
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ou will often hear people speaking about Lepra as a family and that is undoubtedly our greatest strength. No matter the contribution, together we work to achieve something great; our collective mission to beat leprosy.
Ian and Dorothy later worked in Japan, Ian as an academic researcher, where his studies gave him incredible insights into the discrimination and prejudice faced by people affected by leprosy, which many still face today.
For nearly 100 years, Lepra has been dedicated to finding, treating and advocating for individuals living with leprosy; arguably the world’s most marginalised and vulnerable people. Lepra has prioritised being evidence led, an approach which culminated in the use of Dapsone in 1948, adopted as the cure for leprosy and still used as one of the three antibiotics which make up the multi-drug therapy medication prescribed today.
After moving back to the UK, Dorothy and Ian had both the financial security to become more involved in the fight against leprosy, and together chose to support Lepra with regular support given through a direct debit.
Our work attracts a loyal and dedicated army of supporters, two of whom have kindly provided an insight into why they choose to support leprosy. Ian and Dorothy Reader have supported Lepra since the early 1970’s, it started for Ian when he (in his words) was a fresh faced graduate, traveling across India. “I saw for the first time people with leprosy and how they were treated (and shunned), it shocked and upset me to think that people could be treated in that way because they were unfortunate enough to have a disease that was not their fault and that could afflict anyone”.
Following a professorship in Hawaii, Ian visited the former leprosy settlement of Kalaupapa and had the opportunity to meet people who have been affected by leprosy. He described to us the memory he will always carry, that of the dignity of the people he met, despite the challenges they faced. The Readers life-long commitment to people affected by leprosy, and their deep understanding of the struggle faced by so many throughout history, represents a selflessness echoed by so many of our long-term supporters. Their commitment to the cause is also reflected with a personal decision to leave a gift in their will to Lepra; allowing us to continue our work to #beatleprosy
A legacy that lasts a lifetime
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egacy giving makes the world a better place, for generations to come. Our vision is a world free from prejudice and discrimination due to leprosy, and a gift in your will can bring us one step closer to this.
We understand that your loved ones will always come first, but after you have taken care of them, would you consider remembering those most vulnerable, most marginalised, often forgotten, by leaving a gift in your will? Every third person we help is because of a gift left in a will. If you have any questions or would like to receive our legacy guide, please make contact with Olivia Egan who would be delighted to help. Olivia can be reached by email at OliviaE@lepra.org.uk
Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG 01206 216 700 - www.lepra.org.uk - lepra@lepra.org.uk Registered charity number: 00213251 (England and Wales) SCO39715 (Scotland)