UNITED DIGNITYIN A look back at Her Majesty’s 70 years of commitment to Lepra, and the people we support, in honour of The Platinum Jubilee.2022
Her Majesty The Queen and the Duke of Edinburgh awarding first prize to Neelima Reddy at Lepra’s ‘Quest for Dignity’ prize presentation in 1999.
to dedicate this bespoke book to Her Majesty Queen Elizabeth II on the historic occasion of her Platinum Jubilee.
The Jubilee is truly a great moment in world history, and when we began thinking of how we could best commemorate it, we wanted to create something that celebrated both the unique history of Her Majesty’s reign and her ongoing passion to address leprosy in the world. So, this book is our way of doing that, and we present it with deep gratitude for all she has done to raise awareness of leprosy and for Lepra in her capacity as our royal patron.
LepraForewordishonoured
Jimmy Innes Chief Executive Suzanne McCarthy Chair of Trustees
The history of Lepra and Her Majesty are intertwined. One was born in 1924, and the other in 1926. Around the time that Queen Elizabeth II ascended to the throne, scientific advances in the world of leprosy were introducing medical cures for the first time. It was a turning point for both the future course of the United Kingdom and the hope for a world free from prejudice and disability caused by leprosy. It has been a 70-year journey of progress for both ever since. Much still needs to be done before leprosy ceases to be a public health concern, and millions of people around the world will live forever more with the impacts of leprosy. We will continue to do all that we can to support people affected by leprosy in the world, and we will continue to draw strength from Her Majesty’s support for this cause.
HER MAJESTY THE QUEEN’S PLATINUM JUBILEE
John, blinded by leprosy, is making a speech in honour of the Royal visit. 16 February 1956. Oji River, Nigeria.
An Introduction Lepra is proud to have Her Majesty The Queen as our patron and The Duke of Gloucester as our vice president. Lepra’s relationship with the Royal Family has been longstanding since our inception in 1924, when the Prince of Wales, the future King Edward VIII became patron of the British Empire Leprosy Relief Association (BELRA), now known as Lepra. Her Majesty The Queen has been Lepra’s patron since her succession to the Throne on 6 February, 1952. She followed in the footsteps of her father, King George VI who was patron BELRA. Leprosy is a widely forgotten and deeply misunderstood disease and Lepra’s Royal patronage has performed a vital role in helping us keep leprosy in the public’s collective consciousness. Our close relationship has enabled us to remind the world that leprosy still exists and importantly, is curable with treatment. Her Majesty The Queen’s deep empathy for people affected by leprosy, as demonstrated throughout numerous visits to our programmes, centres and fundraising events, has played a key role in breaking down the barriers of prejudice and discrimination. This has led to a cultural shift in the perception of leprosy, and greater care and empathy for the people which it affects.
About Lepra Lepra’s story began in 1923, when Major General Sir Leonard Rogers, ex-Indian Medical Service, agreed to join Rev. Frank Oldrieve in forming a new association with the aim of highlighting the impact of leprosy within the Commonwealth.
On 31 January 1924, the British Empire Leprosy Relief Association (BELRA) was officially founded by Rogers and Oldrieve, with the financial help of Sir Frank Carter, a Calcutta businessman and philanthropist. BELRA was inaugurated by the Prince of Wales (later King Edward VIII) at Mansion House in London.
Set up as a medical organisation, Lepra spearheaded outpatient work instead of following the traditional method of compulsory segregation. From his experience, it was clear to Rogers that it was important to treat leprosy in its earliest stages, and that the segregation system reinforced social prejudice, causing people to hide their diagnosis for as long as possible, often led to further complications and significant Lepra’sdisabilities.founding principles remain true in 2022. We continue to take a pioneering, person-centred approach, advocating for early case detection, building and strengthening community-led healthcare, fighting leprosy-related discrimination and providing a voice for the world’s most vulnerable people; those people affected by leprosy and LF.
Major General Sir Leonard Rogers
In the 1940s, a key breakthrough came with the trial of Dapsone treatment in India. Dr Robert Cochrane was the first to use Dapsone in Madras, India, on behalf of BELRA. Dapsone was the first truly effective treatment for leprosy, and to this day, remains an integral part of modern multi-drug therapy (MDT).
Leprosy Review
A Hunt for the Cure
This was a strong indication that our founders had been right, and that with dedicated research, a lasting and effective cure was indeed possible. In 1946, a BELRA research unit was set up in Nigeria with the start of further research into new drug therapies.
BELRA was renamed Lepra in 1964. The 1970s was the decade that saw Lepra step out onto the world stage. Research moved on, with a new drug called Rifampicin, an antibiotic, becoming increasingly important to the treatment and cure of leprosy. In 1975, Lepra was the first organisation to use MDT in the treatment of leprosy.
Over the years, Lepra’s scientific research has played a leading role in the development of modern leprosy treatments.
In 1928, BELRA launched a quarterly scientific journal called ‘Leprosy Notes’, dedicated to publishing research and sharing our understanding of this complex disease, with the aim of eventually providing a cure. In 1930, the publication was renamed ‘Leprosy Review’ which continues to this day.
Dr Robert Cochrane
1947Africa
A young girl affected by leprosy, who was being sponsored by the Queen Mother, meets Her Royal Highness at the Itu settlement, Nigeria, in 1947. ‘Queen Elizabeth Cottage’, a children’s home in Tanzania funded by Her Majesty. Budesta and the Guides at Itu.
As Princess Elizabeth, Her Majesty The Queen had taken an interest in leprosy as early as 1947 when she was one of the first Royal sponsors of BELRA’s Child Adoption Scheme. The Child Adoption scheme was used to house, educate, feed and treat children for leprosy. Lepra needed sponsors from the UK to step in to support these children otherwise they would face unimaginable hardship. Her Majesty sponsored two children at Itu Leprosy Settlement in Nigeria, including a young girl called Budesta Kevina. With this support, Budesta received treatment, an education and the chance to flourish. Without the intervention of the Queen, she almost certainly would have been shunned by society; condemned to a future of poverty and poor health.
Following her wedding in November 1947, Princess Elizabeth sent a portion of her wedding cake to the Girl Guides at Itu, which became affectionately known as ‘the Nigerian Slice’. Her Majesty later provided support for the building of new children’s homes where the adoption scheme was being introduced in Tanganyika (now Tanzania). She continued to sponsor children in Africa and India until the end of the scheme. Budesta was cured and went on to lead a life free of leprosy, and in 1958 was married.
BELRA IN THE 1940s The Child Adoption Scheme
The striking image, which formed the cover of Lepra News in July 1952, showed the children, on board a bus, basking in the empathy and humanity shown by the Royal party.
Breaking the Cycle Of Prejudice and Isolation
Throughout Lepra’s history, we have sought to break the cycle of prejudice and isolation, which for many, causes significant emotional health difficulties and prevents people from coming forward to seek early treatment, which can prevent disabilities from occurring.
During the Royal tour of South Africa in 1952, Her Majesty and Princess Margaret, notably broke away from the royal party to speak with a group of children who were only able to watch in “sad isolation”. The children had been kept at a distance throughout the visit, not permitted to come close or take part in the celebration because of unfounded fears of the infectiousness of leprosy.
SOUTH AFRICA 1952
1956NIGERIA
The Duke of Edinburgh’s Support in Leprosy Research. His Royal Highness was a valued and long-standing supporter of Lepra. In 1956, during the Royal visit to Africa and as a part of their support of Lepra, Her Majesty and The Duke met with many people affected by Princeleprosy.Philip was notably warm, sympathetic and supportive of the many people with leprosy he met. This included a young boy he kindly sponsored. During one visit to Lepra’s programmes in Africa, His Royal Highness took a particular interest in the scientific advances following Lepra’s pioneering use of Dapsone as the first cure for Accompaniedleprosy.by Dr Davey, clinical leprologist at the Dichpalli Leprosy Hospital, His Royal Highness was famously photographed peering into a Lepra microscope at the leprosy bacilli. Dr Davey was able to answer the Duke’s many questions. Both Prince Philip and The Queen supported the new building of children’s homes in Nigeria, where young people affected by leprosy could live and receive treatment, care and education.
For 10 years from 1966, Doctor Brownlow David Molesworth made a huge impact on the lives of people undergoing treatment at Lepra’s Malawi settlements, outpatient clinics and hospital unit. From supporting people to receive the treatment they needed, to breaking down social barriers and undertaking significant research in the fight against leprosy, Dr Molesworth was a significant and influential clinician. His research project which aimed to eradicate leprosy from Malawi using Dapsone, was hugely successful.
The old regime of driving Leprosy Patients away from their homes Is long since forgotten. People live equally nowadays Leper Or no Leper. For segregation is no more in practice. O friends and brothers Let us all thank DR MOLESWORTH For the work he has done to our country. Farewell Doctor and have a good journey Rememberhome.us wherever you will be. A poem written by Smith Mwenekisindire A patient of Dr Molesworth
The Malawi Project Dr Molesworth
Accessibility remains a priority for Lepra, with our mobile provision reaching remote and rural areas of India. Our mobile footwear units play an important role in the management and prevention of leprosy-related disabilities, as well as providing a hub for signposting support and early detection of the disease.
A key innovation of the project was the use of Land Rovers and bicycles which were used as mobile clinics, with staff visiting each village on the same day each month.
Early case detection was crucial, the local population welcomed the initiative and numbers attending these clinics remained high. Prejudice was absent and the name of Lepra was clearly displayed on the sides of the Land Rovers making them instantly recognisable. No longer did people hide the fact they had leprosy but stepped out to receive medication and support as required.
Gunesekaran’s Story Throughout its history, Lepra has worked to improve both the emotional health and quality of life of countless thousands of children with leprosy. In 1966, a 9 year old boy called Gunesekaran was abandoned by his family and left at a settlement named Fatima Nagar, South India. “He cried and cried and would speak to no-one, he would sit, uninterested in the world about him.” But over time, and with other children from the community encouraging him and adults caring for him, he once again shone brightly. “One day our little Gunesekaran smiled. It was the news of the day”. Not only did Gunesekaran smile, but he also took centre stage in both dancing, with feet bandaged, and singing. “Now he is someone and can do something and is happy. He is in the first line for everything that he can manage and is very popular.” This is a beautiful example of Lepra’s person-centred approach; supporting and treating the person, not just the disease. To this day, our programmes are dedicated to working with the most vulnerable people, with a particular importance placed on the fact that there is no health, without mental health.
“One day our little Gunesekaran smiled. It was the news of the day”.
1966India
His Royal Highness the Duke of Gloucester at a Lepra event in 2020 with Lepra’s former CEO, Geoff Prescott and former Chair of Trustees, Charles Bland.
The Duke of Gloucester Lepra’s vice-president, His Royal Highness the Duke of Gloucester has for many years, played a progressive role in advancing Lepra’s key aims, and advocating for the rights of the ‘world’s most vulnerable people’. On World Leprosy Day in 1991, The Duke of Gloucester perfectly epitomised Lepra’s most potent message; that leprosy is curable, and will one day be considered a disease of little consequence. “In a way, leprosy is an optional disease, in that we know what to do about it. We must hold on to the fact that it isn’t necessary and that it shouldn’t be with us in the 21st century”. He regularly attends Lepra events. In 2020 for example, he was a guest of honour at Lepra’s ‘World Leprosy Day’ event at the House of Lords and in 2019, a key fundraising event at the Imperial War Museum, Duxford. Throughout the pandemic, The Duke of Gloucester regularly made contact to enquire about the welfare of staff and the circumstances of the people affected by leprosy. His Royal Highness the Duke of Gloucester, speaking on World Leprosy Day, 1991.
A Voice for Change
1989India
Health system strengthening is one of the most potent and enduring aims for Lepra in the fight against leprosy. Working with governments, local healthcare provision and training people within their own communities, we are creating a culture of empowerment and longevity. Key to our success in beating leprosy, is that we exist within the communities we support, enabling us to build trust and transcend the myths and prejudice which cause so much harm.
On 3 August 1989, Lepra’s sister organisation ‘The LEPRA Society of India’ (LEPRA India) held its inaugural meeting in Hyderabad. LEPRA India, has extensive reach throughout 6 states and the capital, Delhi. Their organisational independence provides a unique ability to work within local communities, and play a vital role in supporting the Indian government’s National Leprosy Eradication Programme (NLEP).
Empowering the Community
LEPRA India currently supports over 40 programmes and referral centres across India, providing a wide range of services such as awareness raising, early case detection, disability management, mobile footwear units, multi-drug therapy, reconstructive and eye surgery referrals and mental health support.
LEPRA India
The Blue Peter Health and Research Centre 25 years ago, the children’s television show, Blue Peter, ran a fundraising appeal for Lepra that would go on to change the face of leprosy support and treatment in India forever. Children set up bring-and-buy sales across the country, and the response was phenomenal. £2.8 million was raised in total.
The Blue Peter Health and Research Centre (BPHRC) was officially opened on December 14th 1999 to provide leprosy, TB and HIV research to find more effective treatments, and ways to prevent disabilities. The BPHRC continues to thrive and grow, a shining example of excellence, which will forward research and treatment in India, for generations to come. In a letter sent in to Lepra News entitled A Bright Blue Future, Mrs Sheila Parry from Clwyd wrote of how she had sent her copy of Lepra News to one of her grandsons, who had supported the Blue Peter Appeal. He then organised a cake sale at his school, raising £100. Her final sentence reads: “I am glad that future generations have had their interest aroused, perhaps we will eventually be able to eliminate leprosy from the world.”
Blue Peter presenter and Lepra ambassador Stuart Miles returns to the BPHRC in 2018 to see how the centre has grown and developed.
1999India
The Integration of Mental Health
Leprosy and LF interventions are often complex and include long-term treatment such as self-care.
Mental Motivators
Lepra’s research consistently shows that one in two people experience significant mental health problems as a result of their diagnosis. Without a mental health component directly integrated into our work, there is an inevitable impact on people’s ability to adhere to treatments. We have seen that in providing integrated mental health support within our programmes, there are improved physical health outcomes for people affected by leprosy and LF.
The result of Lepra’s research has led to the adoption of a holistic approach to the care and support of people affected by leprosy or LF. 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 now serves as a blueprint for our approach. Core to the programme’s success is the provision of peer counselling by people trained within the local community and existing self-care groups.
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 a new project called ‘Samarth’, supported by Canadian charity Effect Hope, which extends the concept into India.
2019Bangladesh
In 2019 Lepra Trustee and Emeritus Professor Diana Lockwood travelled to India with Tom Bradley, professional photographer, to document the lives of those people affected by leprosy.
To show what it’s like to live with leprosy, Professor Lockwood, a leading leprologist at the London School of Hygiene and Tropical Medicine, gathered a range of personal stories along with some inspirational images, in order to reduce the negative connotations associated with a leprosy diagnosis.
Over the years, Diana was moved by the number of patients who told her that the mental toll of the condition left them feeling suicidal. Many went onto explain that because of the negative connotations surrounding leprosy, their family and friends, abandoned them leaving them as outcasts.
The New Faces of Leprosy exhibition showcased that leprosy is curable, that it is not a worst case scenario and that people affected are valuable members of society. These wonderful images highlight that individuals do not need to be defined by their disease and that leprosy is, in fact, a treatable infection.
New Faces of Leprosy
Photographic Exhibition
Note: Professor Diana Lockwood been associated with leprosy for over 30 years. She was the editor of Leprosy Review, from 1996 until 2012. Diana holds the world record among leprologists as having treated leprosy patients from 35 different countries.
2019India
Response
During the COVID-19 crisis, many people affected by leprosy lost their livelihoods. With little to no savings to fall back on, families were on the verge of starvation. People living in marginalised communities, like leprosy settlements and rural villages with high numbers of cases of LF, had poor access to COVID-19 services. Unless their immediate needs were met, families and their local communities struggled to be a part of the sustainable response to the COVID-19 pandemic.
Lepra’sCOVID-19Humanitarian
Lepra’s humanitarian response was a multi-pronged approach with in-clinic and mobile COVID-19 testing, food aid packages, oxygen concentrators delivered to local hospitals in need and as of April 2021, COVID-19 vaccinations.
Between 2020 and 2021, Lepra conducted over 5,500 PCR tests, distributed food support and personal protective equipment to 12,364 people, provided 15,523 people with vaccinations and provided 80 oxygen concentrators to local hospitals across the states of Telangana and Andhra Pradesh.
From humble beginnings. Sumon’s powerful story of personal resilience and ingenuity, with support of Lepra’s community healthcare.
The Power of the Community Sumon first noticed symptoms of leprosy around 22 years ago and visited his village doctor on numerous occasions. He spent over 30000 Takas (£370), but because the village doctor was not trained in spotting the signs of leprosy, Sumon was not given multi-drug therapy (MDT) or suitable follow-up care which could have prevented his condition from worsening. In 2006, Sumon’s friend, a rickshaw driver who had himself been successfully treated for leprosy, noticed his deteriorating condition and suggested he visited the Pabna Sadar Health Centre. Sumon took the advice of his friend and visited the centre where Lepra specialists examined him and diagnosed leprosy. Because of a lack of early treatment, Sumon was suffering with significant injuries to his feet. Lepra immediately referred him to Nilfamary Hospital where he was admitted for extensive operations, 6 months of post-operative care and multi-drug therapy to treat and cure him of leprosy. As part of his care package, he was referred to a local self-support group, where he was given financial assistance to help him fulfil a dream of starting his own business. In the spring of 2014, Sumon opened his first grocery shop, which soon gave him over 150 customers a day. He also started producing his own food products which enabled him to grow his business, now employing 15 people, including several who also have disabilities as a result of leprosy. With the help of Lepra, Sumon has taken a leading role in the development of a new district federation in Pabna, so he can help others in the way he was helped by his local self-support group (SSG). The federation now represents 111 SSGs with over 1,433 people attending the groups regularly. Sumon’s story perfectly illustrates the power of Lepra’s approach, to strengthen local healthcare, to provide people with a powerful voice and empower communities to take ownership of their care for a sustainable future.
Sumon’s Story
Lepra’s Centenary
The Future of Treatment and Care On the 31 January 2024, Lepra will reach its 100th anniversary and will take the opportunity to honour the past, reflect on the present and shape the future of leprosy control.
Early case detection for leprosy and LF has always been a key part of Lepra’s work, ever since the organisation was founded in 1924. With nearly 100 years’ experience in active case finding campaigns, Lepra will continue to positively engage with communities burdened by disease, using different strategies to find cases early and refer people for the treatment and support they need. Our cause drives us in all that we do, and we are forever grateful and humbled to have the royal support of Her Majesty the Queen as our patron and the Duke of Gloucester as our vice president. Thank you
2024Lepra
United in Dignity In honour of Her Majesty’s 70 years of commitment to Lepra, and the people we support.Lepra,28Middleborough, Colchester, Essex, CO1 1TG 01206 216 700 - www.lepra.org.uk - lepra@lepra.org.uk Registered charity number: 00213251 (England and Wales) SCO39715 (Scotland) Researched by Lepra volunteer, Jane Hadcock
