Spring 2017
LepraNews lepra.org.uk
In this issue Pioneering a new method to find people living with undiagnosed leprosy
Patron: Her Majesty The Queen
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LepraNews Our colleagues in India participating in their sponsored walk on World Leprosy Day
Spring 2017
First – a big thank you! Over the last few months your donations have helped us to raise a tremendous amount of money. Your generosity has greatly contributed to changing the lives of many children, women and men. We had global support on World Leprosy Day, where there were sponsored walks, colour rallies, bake sales and fancy
Stop press!
dress days.
We’re exceptionally pleased to announce that our BBC Radio 4 appeal has helped us to raise over £16,000 so far!
In this issue Page 3
Meet the new members of our Lepra family
Page 4 - 5
Pioneering a new method to find people living with undiagnosed leprosy
Page 6
Three generations of leprosy
Page 7
Out and about in the community
Page 8
Dates for the diary
A few celebrities even took to Twitter that day to show their support (and selfies)!
Pictured: Sir Tony Robinson
On International Women’s Day, we saw some fabulous fundraising across the country, from life-changing tea parties to our ambassadors appearing on national and regional radio stations to raise awareness about the discrimination women with leprosy can face.
Keep up to date with the latest news on our projects and campaigns on social media:
Facebook.com/LepraHealthinAction @Lepra_HinA Instagram.com/lepra1 Our front page features the Manjhis, a family who have all been affected by leprosy, you can read more about their story on page 6.
Without your amazing support, we simply would not be able to change the lives of people with leprosy. We would like to say a big thank you and hope that we can carry on fighting this disease together.
www.lepra.org.uk
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Dear friends and supporters of Lepra, As Lepra’s new Chief Executive, I am honoured to pick up the baton from Sarah Nancollas. I thank her for her exceptionally hard work and wish her well for the future. After many years of working overseas in medical humanitarian aid, and my experiences, now long distant, of working at the Hospital for Tropical Diseases, joining Lepra feels like completing a circle – returning to my roots in neglected diseases and supporting people fighting against prejudice. I was drawn to Lepra’s history of treating leprosy patients, coupled with our pioneering innovation that improves the lives of beneficiaries everywhere. There are very few Non-Governmental Organisations with such a storied past, knowledge and credibility. Lepra is special, in that we add advocacy to medicine and health, all with a holistic focus. This is something that resonated with my personal beliefs and values - to focus on the person, not just the disease. There are currently many inspiring field projects including the development of new case finding methods in the Indian state of Bihar, which are featured on page 4. These activities have a real impact on beating leprosy. Our challenge is to continually develop this early case detection in order to prevent irreversible disability. At Lepra we have so many hard-working, passionate and friendly people, all focused on the change they can bring to transform people’s lives. I look forward to meeting many more great people in the coming months. For the future, Lepra will continue to be a global catalyst for even better leprosy treatment, disability care and driven to reducing transmission and prejudice. This organisation will continue to thrive and succeed in support of our goal of making leprosy a disease of little consequence. I look forward to working together to beat leprosy!
Geoff Prescott Chief Executive of Lepra
We are also delighted to announce that Fiona Duby OBE has become a Lepra Ambassador after being a trustee since 2000. She joins Victoria Hislop and Rajeev Sharma in this crucial role to help us raise our profile and awareness of leprosy. Fiona has spent the past 40 years working in the design, management, strategic planning and evaluation of public and private sector health and development programmes. In recognition of Fiona’s accomplishments, she was awarded an MBE for services to Bangladesh in 1992 and an OBE for services to Nigeria in 1999. Fiona says:
“Having seen leprosy during an overland journey through Africa in 1975, and then again in Nigeria, I realised that the disease was a hidden problem affecting the poorest of the poor in a stigmatised situation which kept them apart from society.”
We welcome her into the role of Ambassador and are incredibly pleased to continue our valuable partnership.
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LepraNews
Spring 2017
Pioneering a new method to find people living with undiagnosed leprosy Meet Rajni Rajni Kant Singh is the state coordinator for Bihar. He spends more than 20 days each month visiting our various projects and covers around 3,000 kilometres training staff and treating people. He gives us insight to what a typical day looks like for him: “I always travel on Sunday to reach a district so I can start work on the Monday morning. 5:30am – After drinking my tea I go for a 40 minute walk. Back in my hotel, I pray at 7am, eat my breakfast and check my emails. 8:00am – I travel by motorbike or a 4x4 to the villages and spend the morning treating patients and examining unusual or complicated cases of leprosy. 2:30pm - I sit with the physiotherapists and shoe technicians to discuss new ideas and ways we can help more people. 6:00pm - I return to the hotel and unwind with a bath before checking emails and then retiring to bed.”
Rajni giving a talk about our work.
Today, it is estimated that three million people are living with undiagnosed leprosy. Limited access to healthcare, poor health education and fear of diagnosis due to the stigma surrounding the disease means that many do not receive the required treatment. They live with increasing disability, whilst the disease is free to pass onto other members of their community. Given the importance of detecting missed leprosy cases in the community, the Indian Government recently launched the Leprosy Case Detection Campaign (LCDC) to actively find people living with undiagnosed leprosy. One of the areas they are focusing on is Bihar, which is one of the poorest states in India and carries 10% of the world’s leprosy burden. Alongside this, Rajni and his team in Bihar have been carrying out an innovative active case finding programme to establish whether the government initiative is succeeding in finding all leprosy cases. The project is an extension of our current case finding methods but encompasses a much wider area. Rather than restricting screening to the home of a diagnosed person, our team visited up to 25 surrounding households, and, in addition conducted “special surveys” amongst Scheduled Castes and Tribes in these affected areas, to ensure these disadvantaged indigenous communities were included in this programme. Initially implemented in Bihar for 6 months from June December 2016, our community champions visited a total of 85,560 people, detecting and treating 321 new cases of leprosy. By contrast, the Indian Government’s Leprosy Case Detection Campaign only detected 106 cases in the same area over the time frame of one year – indicating these 321 cases had been missed in the government campaign. We believe these additional cases were found due to our focus on both the wider screening area and the “special surveys”; and alongside these surveys, each community also received health education talks to help dispel any fear about the disease. Our teams also found that due to our history and credibility, there was a high level of trust and openness with communities, allowing our teams to engage with people easily and ensure the correct information and support was given to each individual.
Among the total 321 new cases detected: • 3% of new cases reported a disability
• 119 cases (37%) were children under 15 years, among which 52 (44%) were identified through special surveys • The reported gender split in new adult cases was 52% male, 48% female.
www.lepra.org.uk
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Finding the hidden women Government statistics in India have previously reported a lower percentage of female leprosy cases. For example, the 2014/15 National Leprosy Eradication Programme (NLEP) reported only 37% of new cases in Bihar as female. However, there is currently no evidence to suggest that women should be less affected than men. Through our new methods of case finding, 48% of cases reported were female. Women are often restricted to the home, due to time-consuming domestic tasks in addition to social barriers where 80% of women require permission to visit healthcare facilities. By conducting house to house screening with female health workers we have succeeded in breaking down some of these social restrictions which prevent women accessing health information and care.
Across all the people we diagnosed with leprosy, only 3% reported a disability, which indicates our detection methods are an effective way to find and treat people, before life-changing disabilities develops. In addition, 65% of those diagnosed were from Scheduled Castes and Tribes. This highlights the importance of visiting these rural and tribal areas, to ensure these neglected communities receive the healthcare and support needed to overcome this disease.
The future of active case finding With the overwhelming evidence that there are many more cases of leprosy going undetected, we are now working to scale this project up to cover all of our projects in India, Bangladesh and Mozambique. We are also sharing our findings with governments and the International Federation of Anti-Leprosy Associations to encourage the global implementation of these methods.
Preventing disability in children We found that 37% of those diagnosed during our surveys were children, compared with a national percentage of 9% and most of these children were detected through the “special surveys” within indigenous communities. For these children, we will be able to minimise the long-term consequences of leprosy.
“Our active detection surveys make it very clear that we must do more to find new cases to prevent more people from living with disability. It’s not enough to only check family members. Leprosy is contagious and it only makes sense to screen communities and provide access to treatment before it’s too late.” - Rajni Kant Singh
Our community champion checks a man for signs of leprosy
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LepraNews
Spring 2017
Three generations affected by leprosy During one of our active detection surveys conducted in Bihar, we met the Manjhis, a family who live in a remote area of the Munger district and over six miles away from the nearest primary health centre. The family are registered as below the poverty line, where father, Baounu earns a daily wage of 200 Indian Rupees – the equivalent to approximately £2.40. After carrying out our survey, we found that their two young children both had leprosy. Gudiya, aged ten, who studies at the local school and her brother Pardeshi, aged eight, who attends pre-school. The two children are now receiving regular treatment and, because they were diagnosed early, they are still able to continue with their studies and will not develop any disability as a consequence. It was later revealed that there has been a family history of leprosy for three generations. Baounu, contracted leprosy seven years ago, whilst his wife, Kasho Devi, had contracted the disease five years ago, and Baounu’s father, (the children’s grandfather), Boran Manjhi, has also experienced leprosy. They were all treated at the local primary health centre, but they were irregular in taking the medication and did not receive the required health information to recognise the symptoms in their children. Due to the thorough nature of our case finding programme, other family members were checked too and, thankfully, nobody else shows any sign of the disease at this moment in time. Each family member now has the knowledge to recognise the symptoms and if they meet
“I want to be a teacher in my village and teach everyone about health.” Pardeshi, aged eight
“After completion of my education I want study to become a nurse so that I can help my village.” Gudiya, aged ten
someone showing the signs, they will be able to advise them to seek treatment before the disease causes irreparable damage. This story highlights just how fundamental active case finding is in our fight to beat leprosy. Without this programme, Gudiya and Pardeshi’s story may have been very different, marred by painful disability, poverty and stigma. It’s thanks to your support we could find and treat Gudiya and Pardeshi and they can now look to a brighter future.
www.lepra.org.uk
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Out in the community Our fundraising champions have been taking part in some truly inspiring activities over the past few months, helping to raise awareness of leprosy and generate lifechanging funds to help people to overcome this disease and the poverty and prejudice it can bring. The big bounce Soha from King Edward V1 Girls Grammar School in Handsworth, Birmingham tested out her stamina by bouncing continually for an hour on a trampoline! Her fundraising activity raised £75 in total and altogether, the whole school raised £2,776. A big thank you and well done to all!
Climbing the highest of heights! A group of young children from Austin Friars Primary School recently braved the cold to climb Skiddaw – the sixth highest mountain in England. Aged just 6 years old, the children thought up the idea themselves and raised over £1,000. Well done!
A medieval walk to remember
Penny for a poem? A young girl going by the pen name of Quenelda has been putting her literary talents to good use and compiled a collection of poems in aid of Lepra. She was so inspired by a talk she received in school about Lepra that she began asking people to donate £3 to suggest a topic for her to write about. She has raised a fantastic £70 so far. Pictured: The front cover of Quenelda’s poetry book
Below is one of her fantastic literary creations.
Hopes and dreams of a fossil - for granny
Terrible looks Really wrinkled – or are they
I am of stone Low down once, now high up
plates?
On the cliffs
But someday, a person – no, a kid
In amongst the pebbles
will find me
That lie beneath the cliffs Endlessly, endlessly stretchin g on.
Our friends from the Knights of Medway are giving Chaucer a run for his money by embarking on a five day fundraising walk in Kent, starting on 31st May at Pilgrims Way and finishing on 4th June at Canterbury Cathedral. Keep a look out for them if you’re in the area and give them a cheer and a wave to help them on their way!
Pedalling the distance Students from St Albans Girls School have raised an amazing £3,506 for us over the past year! One student in particular, Antonia Jubb, even decided to get on her bike and cycled 31 miles to show her support for us. She said: “It took three hours without stopping, so it was quite full on and although I was tired by the end of it, I felt really proud that I did it.”
LepraNews
Spring 2017
Create a fundraising page If you are taking part in a Lepra event or doing your own fundraising, why not set up a page through JustGiving? It’s an easy and secure way for your family and friends to sponsor you online. Visit justgiving.com to find out more and set up your page today!
Dates for the diary Feeling inspired by the fundraising efforts of our dedicated supporters? There are so many activities you can get involved with to help us in the fight to beat leprosy. 17th June 2017 Edinburgh to St Andrews cycle ride Registration for Edinburgh to St Andrews is now open! Join 1,000 other cyclists on a truly unique route, where you’ll cross the Forth Bridge, cycle through the stunning Scottish landscapes, stop for a bite to eat and then finish in the coastal town of St Andrews.
30th July 2017 Prudential RideLondon - Surrey 100
Paving the way to beat leprosy Since 2015, our corporate partner, York-based, comfort shoe retailer, Pavers have directly helped 5,000 people by funding our first mobile shoe van, which travels across the Indian state of Bihar, delivering custom-made shoes to help those affected by leprosy and lymphatic filariasis. Recently, Managing Director, Stuart Paver and his wife Rachel visited our team in India to see our work in person. Stuart says, “It was an incredible privilege to be able to see the van working in the community and how effectively and efficiently it is being used to help people with leprosy.” Visit lepra.org.uk/our-partnership-with-pavers to read the full story.
You can now book your place for this fantastic cycle ride – one of the world’s largest charity fundraising events. You’ll travel the iconic Olympic 2012 cycle route, starting in London’s Queen Elizabeth Olympic Park, weaving through the City of London and then cycling on into the beautiful Surrey countryside.
To book your space onto any of our events visit lepra.org.uk/events
Leave a lasting legacy Help people affected by leprosy build better lives, long into the future. Leaving us a gift in your will is a powerful way for your beliefs to live on. A gift of any amount will help us reach even more people with early detection, health education and expert support. Visit our website to download our free information booklet lepra.org.uk/gift-in-your-will. Or contact our Donor Support team on 01206 216700 or DonorSupport@lepra.org.uk.
Facebook.com/LEPRAHealthinAction @Lepra_HinA
Lepra, 28 Middleborough, Colchester, CO1 1TG Tel. +44 (0)1206 216700 Fax +44 (0)1206 762151 lepra@lepra.org.uk www.lepra.org.uk Patron: Her Majesty The Queen Registered Charity Number 213251 (England and Wales) SCO39715 (Scotland)
Image credit - Prudential RideLondon
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