LEPRAnews Bihar: A state in distress
In this issue: Life in India’s poorest state Deadly new TB strain
May 2012 www.leprahealthinaction.org
LEPRAnews
Welcome
Hello and welcome to May’s edition of LEPRA News. Summer appears to be on its way here in the UK, while in India and Bangladesh signs of the approaching monsoon season will start to be seen later this month.
May 2012
In this issue Message from the CE
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In this issue we have focussed much of our attention on Bihar, one of India’s poorest states, with a population 1.5 times that of the UK. Eight out of ten people here live on less than £1 per day. Huge distances, poor infrastructure coupled with annual flooding brought by the monsoon pose challenges for our project staff.
Cover Story
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Bihar carries an excessive health burden: the highest number of new leprosy cases in India each year; 80 per cent of India’s kala-azar cases; and a disproportionate number of people with lymphatic filariasis. LEPRA is the leading organisation helping to control leprosy in Bihar, and our expertise in tackling this and other diseases of poverty means you are really needed by people living here. Thank you.
TB develops a deadly new strain
Joanna Belfield Editor, LEPRA News
Editor Joanna Belfield Contributors Sarah Nancollas – Chief Executive Madhavi Sakuru – Programmes Officer Rajni Kant Singh – State Coordinator Celia Richardson – Volunteer Catherine Cherry – Programmes Officer Nicolette Dawson – Communications Irene Allen – Asst Editor Leprosy Review Joanna Belfield – Editor LEPRA News Lizzie Dearling – Events Fundraiser Karen Page – Development Officer Ros Kerry – Community Fundraising Community Fundraising Team Photography James Farmer LEPRA’s staff Colin Summers Photography Design and Print The Print Connection, 01473 810230
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Life in India’s poorest state
LEPRA staff
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Day in the life of Bihar’s State Manager
Programme News
8
Campaigning News
10
LEPRA campaign results in change to major film
Fundraising News
13
Community News
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Case Study
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Dates for your Diary 2012-13
Reg Charity no. 213251 Charity registered in Scotland no. SC039715
LEPRA Health in Action 28 Middleborough Colchester, CO1 1TG 01206 216700 www.leprahealthinaction.org
Edinburgh Marathon 27th May
Dublin Marathon 29th October
BUPA London 10K 27th May
India Bike Ride Madhya Pradesh 10th to 24th November
Hadrian’s Wall Trekathon 23rd June
Great Swims (1 mile) Various dates and locations
Great North Run 16th September
India Bike Ride Andhra Pradesh January 2013
Virgin Active London Triathlon 22nd and 23rd September
Supporters’ Trips January 2013
Berlin Marathon 30th September
For more information about these fundraising events, email events@leprahealthinaction.org or telephone 01206 216799. More details are also available at www.leprahealthinaction.org.
messagefromtheCE
Aid to India: overcoming the poverty divide
by Sarah Nancollas
Kala-azar poses a serious threat to children
With a space programme and many millionaires, the question of the UK government’s aid to India is a hot topic in the media. In this issue we demonstrate the acute need for external support for some parts of India. LEPRA is constantly looking at how we can best allocate our resources to make a difference to the lives of the country’s poorest people affected by leprosy and other neglected diseases. Having just returned from Bihar, one of the world’s poorest areas, I am convinced of the need to continue our work in this state. Bihar has a population of over 100 million people and the BBC recently stated, “If Bihar were a country, its per capita income would be the third lowest in the world. Only Somalia and Niger would be below it.” Bihar has come a long way in the last few years, with a now stable government investing in services and infrastructure, but it is starting from a very low base with a very rural and difficult to access population and low literacy levels. To travel 100 kilometres routinely takes between three and five hours, and that is on the better roads. Bihar on its own accounts for over 10 per cent of the world’s new leprosy cases and carries 30 per cent of India’s lymphatic filariasis (LF) burden. The government struggles to keep medical staff in remote areas and this creates difficulty in accessing accurate diagnosis and appropriate treatment. This
is where we make a significant difference, giving health education to communities, training health volunteers, and providing specialist services in leprosy and LF through our referral centre model. We work with government, bridging health gaps and training their staff so that states like Bihar can become self-sufficient in their provision of health services and rely less on our support. So should we continue to give aid to India – for me the answer is clearly yes, but in a targeted way, focusing on greatest need and ensuring that the systems we develop can be adopted by government as it builds its own capacity to provide vital services. Essentially it comes down to transforming lives. In Bengali Tola village, a kala-azar endemic area of Bihar, village elder Bindeshwari Paswan told Mr Paswan - ‘Thank you’ me, “When LEPRA came for lives saved by LEPRA here you saved six lives, and over the last two years no-one has died”. That is the real difference that your support makes to India’s poorest people – thank you. Kala-azar, or visceral leishmaniasis, is a deadly parasitic disease transmitted through the bite of a sandfly. Symptoms include fever, weight loss and swelling of the spleen and liver. Two out of three cases are women and children.
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COVERstory
Bihar: A state in distress India is a huge country with 28 states, each comparable to individual nations. One such state, Bihar, has a population 1.5 times that of the UK and is poorer than Sierra Leone. According to a new international measure of poverty called the Multidimensional Poverty Index (MPI), 421 million people live in poverty across eight Indian states including Bihar – 11 million more people than in the 26 poorest African countries combined. So what does MPI mean and how is it measured? For 81 per cent of people in Bihar, it means a life of unsanitary living conditions and increased risks to health, particularly for children. There is little or no education, and no access to toilet facilities or electricity. At home, floors are made of dung or mud, and people have very few possessions. No wonder then that Bihar has the highest incidence of Neglected Tropical Diseases (NTDs) in India including leprosy and LF, and 80 per cent of India’s kala-azar cases. Lack of public health services close to villages further accentuates the problem as the average distance people travel for medical help is 62 miles. In Bihar, there is only one health centre for every 10,000 people which, according to national norms, should be one per 5,000 people. Similarly, where one primary health centre should cater to a population of 30,000 people, those in Bihar cover a population of 100,000. Dr D K Raman of the Bihar State Health Society, recognises that there is no leading NGO (non-
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governmental organisation) in Bihar except LEPRA India to spearhead work on community health or the prevention and control of leprosy and other NTDs. Table 1: A comparison of Human Development Indicators and incidence of deprivation between Bihar and Sierra Leone
Development Indicators Bihar
Sierra Leone
Population living in poverty*
81%
77%
Births attended by skilled health personnel
37%
42%
Population deprived of electricity
85%
77.9%
Households with access to sanitation facilities
16.8%
13%
Floor
Dung
Mud
Cooking fuel
Dung cakes & wood
Wood & coal
GDP per capita
£288
£463
Underweight children below 3 years
54.9%
21%
Sources: UNDP MDGs India and Sierra Leone 2010 reports; *MPI Country profiles
COVERstory
West Champaran
East Champaran
Sitamarhi Sheohar
Gopalganj
Madhubani Kishanganj
Supaul
Siwan
Araria
Muzaffarpur Darbhanga Madhepura
Saran Samastipur
Vaishali Buxar Bhojpur
Arval
Nalanda
Munger
Bhagalpur
Lakhisarai
eik
Sh
Jehanabad
Kaimur
Katihar
Khagaria
Begusarai
Patna
Purnia
Saharsa
i
Nawada Aurangabad
ur
ap
Rohtas Gaya
n Bihar reports around 20,000 new cases of leprosy every
year, the highest new case detection rate in India n There are 30,000 new cases of kala-azar in Bihar every year
Jamui
malaria and kala-azar as they are flood-hit year after year. LEPRA works in two of these districts
Bihar: A map highlighting the districts where LEPRA works
LEPRA’s projects
n The districts in north and east Bihar are especially prone to
Banka
Districts where we work Chetana - Leprosy Colony Empowerment Project District Medical Centre Eye Care Leprosy - Technical Support Project Office HIV/AIDs Tropical Disease Resource Unit
Dr Raman told us in an interview, ‘One in two medical posts are vacant here because doctors and other medical professionals do not want to be posted in areas without education for their children, basic sanitation facilities or electricity. An astonishing 25 out of 38 District Leprosy Officer posts are vacant and there is only one reconstructive surgery centre for the state in Patna – the state capital’.
Dr Hemkar attributes this appalling state of affairs to the World Health Organisation (WHO) for declaring leprosy officially eliminated as a public health problem in 2006. All the technical support teams were subsequently withdrawn from Bihar, despite it having started to tackle leprosy much later than other states, and government funding for leprosy was significantly reduced.
According to Dr Hemkar, the Civil Surgeon of Munger District, “The system for procuring the drug Prednisolone, which is used to treat painful leprosy reactions, is so complicated that it takes nearly six months before patients are treated. Delayed treatment translates into debilitating conditions amongst patients, contributing to a disability rate of four to five per cent.”
The poor state of public health facilities in Bihar has led to a substantial increase in the demand for LEPRA’s services, resulting in greater pressure on its limited resources. LEPRA is dedicated to improving the health of people in Bihar through providing services in leprosy and LF, and running village health programmes so that help is closer than 62 miles away.
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LEPRAteam
“I provide medical advice and offer any emotional support that I can, as most patients show signs of sadness and depression.” A day in the life of Rajni Kant Singh, LEPRA’s State Coordinator for Bihar 6am
I wake up at 6am, have a cup of tea and read the local paper. Then I clean my teeth, bath, shave, and pray. I have a large breakfast of paratha and sabji with my family. After breakfast I work through last night’s emails and reply to them as much as possible.
9am
I reach the office at around 9am, ready for a short meeting with my team. We discuss the distribution of pending work and tasks for the day, which include our meetings, community activities at our health education camps and prevention of disability camps, complicated case follow-up, and training of health workers.
10am By 10am, patients start arriving at the centre. I talk with them and make them feel at ease. I ask about their family background, occupation, interests and their social activities. This brings me happiness and helps patients feel more comfortable to discuss their disability or medical complications. Then I know their problems for which they have visited. I am trained in physiotherapy, and assessment begins with examination of skin patches, nerve functions, wounds, or any other complication. This takes 1015 minutes per patient. I provide medical advice and offer any emotional support that I can, as most patients show signs of sadness and depression. Sometimes patients also require support in terms of special exercise, orthotics and footwear.
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1pm
Much of Rajni’s time is spent with patients. Here he demonstrates a physiotherapy exercise
I meet with 10-15 leprosy and LF patients before lunchtime. From 1.30 to 2.15pm I take a lunch of roti, dhal and vegetables with team members, and ask them about their day. After lunch I reply to the morning’s emails, then leave for meetings with district health officials and community members. I attend disability prevention camps. Travelling and attending meetings takes up two to three hours.
5pm I return to the office and spend an hour with colleagues reviewing the day’s activities and their feedback with a cup of tea. This is the time where we appreciate and motivate our colleagues for their hard work. Finally 6.30pm or 7pm I reach my home. 7pm After having a shower, I watch TV with a cup of tea to know the happening of the day outside of my world to keep up-to-date. 8pm Between 8-9pm I write up my field research, abstracts, and programme design. This is the good time for me as I am not allowed to watch TV by my wife, because her favourite serials are telecasting. At 9.30pm we have dinner together (roti, rice, dhal, vegetable, with some sweet). I go to bed at 10pm. When travelling by car or train I read. Mostly Saturday and Sunday involves travelling to the districts and Head Office, so that working days can be utilised to restore health, hope and dignity for patients. I am grateful to my wife and children who sacrifice many things in their lives to help our patients. They never question my delay coming home or long time absence from them.
LEPRAteam
LEPRA overseas experience through the eyes of bike rider Celia Richardson “Madhya Pradesh (MP) - where is that?” I asked LEPRA Head Office staff when they asked if I’d like to try out a new cycling route. I’d been to India many times but never to the ‘Heart of India’ - a state with a population of 72 million. We, a group of four women, flew into Indore and were met by LEPRA India staff, Sister Jolly and seven children from the St Joseph’s Leprosy Centre (SJLC). They greeted us with garlands of marigolds and songs – it was the start of two weeks of being treated like stars! Once we’d left the city we were in rural areas, with cotton and chillies being harvested, at times the smell of chillies was overwhelming as we cycled past. We stopped at clinics and saw screening of pregnant women for HIV/AIDs in mobile vans that could reach the dispersed population. We witnessed counselling by caring doctors and met TB medicine providers. These were volunteers in the local community who made sure that patients took their medication – essential to ensure that strains of drug-resistant TB and leprosy bacteria do not develop. On the third day, we reached SJLC and were showered with rose petals. We spent the night in the company of adults and children being cared for after reconstructive surgery. We heard their stories and sang and danced together. They couldn’t believe we had a National Health Service giving free treatment. We were sad to leave but went on to be greeted by hundreds of people at a town called Nepanagar. We joined in dancing down the streets with the local tribal groups. The next day at a health care clinic, patients were shown how to care for their feet to prevent them
Early diagnosis by LEPRA means that this little girl will not become disabled
The bike ride gave LEPRA access to tribal areas they had previously been unable to visit
from getting ulcers. We shared lunch with them to show that we were not afraid of contracting leprosy as there is still a lot of stigma associated with the disease. At another clinic we met a girl (pictured) who had just been diagnosed with leprosy – she had patches of pale skin that showed nerve damage. It was heart-warming to know she was being treated and the disease would not spread and stop her being able to blink or even lead to blindness. We met older patients who could not close their eyes and were being referred for surgery to SJLC, the only centre that performs surgery in MP. In some remote areas, people were amazed to see us riding into their villages as they were never visited by ‘foreigners’. The local LEPRA staff, with the new rapport built through the bike ride, can now enter areas they had been unable to access. Now they work there to help control hidden pockets of disease. LEPRA India organised the trip so well and the welcome we were given everywhere was so warm and colourful that the memories will stay with me forever.
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programmeNEWS
TB develops a deadly new strain Tuberculosis (TB) is a devastating disease. Every year it claims the lives of over one million people worldwide, and causes ill health for in excess of eight million, preventing them from working and pushing them further into poverty. Over a quarter of cases occur in India alone. Throughout the years, more dangerous strains of TB have evolved known as drug-resistant TB. This means that the TB bacteria have developed resistance to the drugs used to treat the disease. TB is treated through a strict six-month drug regime that is administered with support and supervision from a trained person. Drug resistance can develop when drugs are administered incorrectly or when patients abandon their treatment early, believing themselves fully cured. These strains of bacteria can then be passed on to others. Multi-drug resistant TB (MDR TB) is difficult to cure, treatment options are limited and recommended medicines are not always
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Treatment for drug-resistant TB is gruelling, expensive and not always successful. It makes controlling TB even more crucial
available. In some cases even more drugresistant strains of TB are developing. Extremely drug-resistant TB (XDR TB) is a strain that responds to even fewer available medicines. Around 85 per cent of people treated for TB are cured and survive. However, for those with MDR TB, chances of survival drop to around 65 per cent, and are even lower for XDR TB. Currently MDR TB diagnosis is expensive and only five per cent of cases are routinely tested for drug resistance. It costs over 100 times more to treat a person with drug-resistant infection (around ÂŁ1,500 upwards) than common strains of TB. Most cases are only detected when the first line of treatment fails, but by this time the disease may have been spread to others. Untreated, the disease can newly infect 12-15 people in a year. The prospect of spreading a strain of TB that is resistant to drugs is frightening. There were about 450,000 new patients diagnosed with MDR TB around the world in 2010, around 100,000 of those were in India. Worryingly this number is increasing steadily each year. Your support is vital in helping us tackle this urgent problem before it escalates further.
programmeNEWS
How LEPRA tackles drug-resistant TB n LEPRA
has developed an innovative method usually the only option for medical care in remote for safely transporting sputum samples from villages, yet many are untrained and unqualified. suspected MDR TB patients through the Indian This training is important in preventing the postal system. The samples are transported to development of drug resistance in TB patients. LEPRA’s specialised laboratories where diagnostic n The LEPRA Blue Peter Public Health Research tests for multi-drug resistant TB are performed. Centre is researching and developing new n LEPRA trains village doctors and health workers diagnostic tests for MDR TB in an effort to find a to administer TB treatment correctly, provide cheap and effective way of diagnosing its strains appropriate advice, and to follow up patients earlier, increasing patients’ chances of survival. who stop taking treatment. These ‘doctors’ are
Restoring hope and happiness Savithri (47) and her daughter Vani (21, pictured below) have recently completed the gruelling treatment regime for MDR TB. They live in India where TB kills one person every 90 seconds. Savithri was first diagnosed with TB by a village doctor after suffering from a persistent cough, fevers and loss of appetite. Her weight dropped to just five-and-a-half stone. The village doctor prescribed her antibiotic drugs; however Savithri prioritised caring for her daughter and husband over her own health, and did not take her treatment correctly. She did not receive advice and support from her village doctor about the importance of sticking to the treatment regime. As a consequence, Savithri developed multi-drug resistant TB and she passed it on to Vani.
treatment is intensive, causes unpleasant side effects and sickness, and lasts for up to two years. Every day for two years, they were directly observed swallowing 12 medicine capsules and receiving an antibiotic injection. It is no wonder that some patients have difficulty adhering to the regime and stop taking treatment. This makes LEPRA’s job all the more important where we actively observe medicine being taken, provide advice on the treatment and side effects, and follow up those who stop treatment. Savithri and Vani are now cured. Savithri’s sense of well-being has increased; she is putting on weight and is returning to good health.
They were referred to LEPRA’s Dhoolpet Referral Centre where staff diagnosed them with MDR TB at our specialised laboratory. Upon diagnosis, Savithri cried, “Why has this happened to me? I was getting disappointed and depressed that it wasn’t going away.” She prides herself on being a very good mother and was devastated to learn that Vani had caught the deadly TB strain from her, “I was feeling very bad and I cried for days when I found out my daughter had the same disease.” Dr Krishnamurthy, Dhoolpet’s medical officer, provided them with their daily treatment, ensured they attended and monitored them closely, all the way through to their recent recovery. The
Savithri and Vani
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campaigningNEWS
LEPRA campaign results in change to major film
Leprosy disability and discrimination are no joke for millions of people
Earlier this year, we were shocked to find a leprosy joke being used to promote a major new animated film in cinemas and websites around the world. LEPRA contacted the film-makers and media, highlighting complaints received from people affected by leprosy. As a result of our intervention, the film “Pirates! In adventures with Scientists” was changed before its release in March. The illjudged scene featuring a ‘leper boat’ was replaced with a less controversial vessel a plague ship. We felt strongly that a misconception about leprosy on this scale needed to be corrected, and clearly the film-makers agreed. Misconceptions fuel fear and fear breeds stigma. It could have made coming forward for treatment more difficult in those countries where leprosy is endemic and where the film will be screened and watched by millions, especially by young people. More than half of the world’s new cases each year are found in India, a major market for the film and also home to our largest programme. Over ten per cent of these new cases are children.
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We thank film maker Aardman for replacing the scene “out of respect for those affected by leprosy.” The term ‘leper’ has been ruled as discriminatory by the United Nations Human Rights Council and so we are pleased that the joke has been removed. Leprosy is a much misunderstood condition. The response we received from the general public after the campaign showed that many people felt that leprosy and the mistreatment of those affected have been consigned to the history books. This is sadly not the case. For the most part, people in the UK have been unaware of the devastation that leprosy discrimination is causing to people’s lives elsewhere. This means that whilst this film has been changed, it will take a lot more to change people’s perceptions and attitudes. We are not a large charity, yet took a stand against a well-known film-maker. It cost us nothing more than our time and we are pleased that we did so. Much of our success in leprosy over nearly 90 years comes confronting the discrimination that is the result of fear. Your continued support means that people who are affected by leprosy can escape the cycle of isolation, exclusion and poverty.
programmeNEWS
Renewed hope for hidden LF women Lymphatic filariasis (LF) – also known as elephantiasis – is present in 83 of the world’s poorest countries. In India, one-third of the world’s LF patients live in 15 states, with Bihar, Uttar Pradesh and Odisha being the most endemic. It is a leading cause of permanent and long-term disability and sadly one of the most neglected diseases. The disease is caused by parasitic, thread-like worms which are spread by the bite of infected mosquitoes. As well as disfigured limbs, it has serious socio-economic consequences. According to an estimate by the Global Alliance to Eliminate LF, those most affected by the disease in India lose 63 working days a year, resulting in a loss of £113.33 per household per annum. This lost income could feed a family of five for three months. In addition, people living with the most severe swellings and fevers can work less than two-thirds of the time. Women spend almost three days a month less on housework. Women remain most vulnerable due to shame, embarrassment and cultural constraints preventing them from seeking help. When seeking treatment, women need their husbands to chaperone them when revealing their swollen limbs to a male health worker. For 50 year-old Urmila (in yellow), a housewife from Munger District in Bihar, the journey from very severe disability to barely visible disability was miraculous. It took 18 months. Before meeting our
A health worker examines Sulema’s leg at a disability prevention camp in Bihar
staff in early 2010, Urmila suffered silently for ten years, hidden away in her house for the shame and embarrassment that her disability caused. She arrived with severe swelling, frequent pain and fever attacks. We treated her condition with deworming tablets, taught her foot exercises and self-care practices of cleaning, massaging and elevating her leg. LEPRA provided footwear to protect her feet from injury and improve circulation in her swollen leg. Urmila’s improved mobility has brought about a renewed hope for a productive and dignified life. She now actively participates in social activities, and is extremely grateful to the relentless efforts of our staff. Many women like Urmila are now members of self-support groups that help others understand the signs and symptoms of LF so they are able to seek early treatment at LEPRA’s referral health centres. These groups also actively participate during the disability management programmes organised by LEPRA and follow-up with the patients as community volunteers.
Sulema takes part in a self-care demonstration. Her condition has vastly improved from when she first started self-care.
healthinswelling action makes | 11 Reduced everyday tasks easier for Urmila
obituaries Dr. Arthur Garrett, 1915-2012 Arthur Garrett was born on 1st November 1915 in Tiverton, Devon, to parents who worked with the Church Missionary Service (CMS). He earned a scholarship to Marlborough College public school where he set a swimming record, and trained as a physician and surgeon at Kings College Hospital, London. Arthur married Mary Roseveare in 1939. With the advent of the Second World War, Arthur signed up for the Army Medical Corps, but wanted to work for CMS and was sent to Nigeria as Medical Director of the Oji River Settlement. His surgical training was put to good use here, performing remedial operations to help deformed leprosy patients. He also helped design the church at Oji River with open sides so that fresh air could circulate, and infected and non-infected people could worship together. In 1956, the Queen and Prince Philip made their first royal visit to a leprosy hospital, and then had ‘elevenses’ with Arthur and his wife. Three years later, Nigeria gained its independence and the Garrett family returned to England. In 1961, Arthur became GP for Reepham in Norfolk, and was the sole doctor for the town and its surrounding villages. Over the next 25 years he built a thriving surgery with three doctors, retiring at the age of 70. He was still growing his own fruit and vegetables, and even fell out of his apple tree aged 91!
John (front row, second left) set up the Pilot Leprosy Control Project in Malawi
John Hodgson Eldon, MBE, 1920-2012 John Eldon was born on 28th October 1920. He was a prisoner of war in Europe in World War II and came to LEPRA (formerly BELRA) through Toc H as they had a branch in the prisoners of war camp he was in. When the war was over, he wrote to apply to BELRA for work. He went to Nigeria in 1946 to learn about leprosy; there he met his future wife, Rose Stinton. In 1947 he was seconded to Government and went to the Gold Coast to run the leprosy survey there. Rose went out to join him, and they married in Ho, Togoland. From 1948-1953 John built a leprosarium from scratch, cutting through untouched bush land, and becoming a ‘jack-of-all-trades’ to ensure the work was done. Having been a prisoner of war, John was no stranger to hard graft, and an excellent leprosarium resulted. In 1965, John was appointed to the LEPRA team in Malawi, setting up a Pilot Leprosy Control Project, and his outstanding administrative abilities were soon in evidence. All the routes for the treatment runs were worked out by him, often driving them himself. This became LEPRA’s flagship project, and John was awarded an MBE in the 1975 New Year’s Honours list for his outstanding administration. Rose Eldon died in 2002 and John is survived by his son Stewart.
LEPRA sends its condolences out to the friends and relatives of the late John Eldon and Dr Arthur Garrett. Both are recognised for their leprosy efforts and will be greatly missed.
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fundraisingNEWS
Give yourself a challenge – and help change someone’s life today With sunny days ahead will you, or someone you know, be LEPRA’s next person to train to run a marathon or cycle across India to change a person’s life? To date, 126 people have run the London Marathon and 193 have taken part in our India Bike Ride challenge, raising vital funds through exercise and activity. You or a loved one could be next! You would be making a real difference to people’s lives. The Events team is welcoming applications for the 2013 London Marathon and LEPRA has a good track record of success in this annual fundraiser. Recently, 21 people took part for LEPRA, with some travelling from Australia. For those looking for a new challenge, why not apply for the Great North Run; Virgin London Triathlon; Berlin and Dublin Marathons; Paris Marathon; the South Downs Trekathon; the Adidas Silverstone Half Marathon; the Edinburgh Marathon; the Great North Swim at Windermere or the Hadrian’s Wall Trekathon? There really is a challenge to suit all tastes.
Chris Wheeler - ‘Making a difference’
Our challenge events are a great way to raise money for LEPRA
Chris Wheeler (68) has supported LEPRA for 15 years. Chris has signed up for our sponsored bike ride in India and, despite not riding a bike for many years, has started training right away. He is also taking on more challenges for LEPRA: The Cape Argus Cycle Tour in South Africa and the Virgin London Triathlon. He is a real inspiration and said, “What has really kept me going is seeing the support and kindness of all the people sponsoring me. I am enjoying my new active life and knowing I’m making a small difference makes me feel good”. He has raised a staggering £2,176 so far. LEPRA’s team organises its own sponsored bike rides in India and offer two different routes, one in Madhya Pradesh and another in Andhra Pradesh and Odisha. These trips are a fantastic way to experience real India, whilst visiting tribal communities, schools and LEPRA’s health centres. If cycling is not your passion, we do offer a supporters’ trip to India, so you can still enjoy a unique and wonderful adventure without the need for a bike. For more information on the events calendar for 2012, fundraising tips, or to sign up for an event – contact Lizzie or Karen on 01206 216799 or email events@leprahealthinaction.org. Twitter users can find us @LEPRA_HinA or online at www.leprahealthinaction.org
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communityNEWS Matthew raises money for LEPRA Matthew sold his toys for LEPRA
Pupils of Langley School in Solihull, West Midlands were visited by LEPRA community fundraiser, Julie Gumbley. They learnt how leprosy affects children in other countries. Matthew Spain wanted to do something to help. He felt it unfair that children suffer with leprosy. Matthew sold his collection of ‘Nerf Guns’, jigsaws and Nintendo, as well as games donated by his twin brother Daniel at a stall outside their home. Through eye-catching signage and texting acquaintances, Matthew sold their treasured possessions. His teachers said, ‘This young man is remarkable and an inspiration because he chose to help those affected by leprosy. Matthew endured medical problems when he was younger and will be participating in the 2012 British Transplant Games.’ The school congratulates Matthew on all that he has achieved, and wishes him good luck for more medals this year. Matthew raised £45 and was delighted with the result. LEPRA thanks Matthew and Langley School for this.
Christ’s Hospital gives warm welcome to LEPRA LEPRA’s Community Fundraising Manager Ros Kerry spoke in Morning Chapel to over 800 pupils at Christ’s Hospital, in Horsham, West Sussex last September. Weeks later, the pupils raised funds through cake sales, chapel collections and raffles for both students and staff. As it was LEPRA’s first visit to the school we were delighted to not only be presented with a donation of £1,900, but chosen as one of their charities for its Advent fundraising.
Kent Grammar Girls get active for LEPRA
Simon Langton girls fundraise through Zumbathon Girls from Simon Langton Girls Grammar School in Canterbury took part in a fundraising event in support of LEPRA, which is run by former pupil Sarah Nancollas. Around 150 girls took part in a sponsored Zumbathon in February raising £1,400.10. The event marked five years of support during which time pupils have raised more than £8,800. LEPRA’s Chief Executive returned to her old school in March to thank the girls at a special assembly. Susan Hall, community fundraiser for LEPRA, also thanked staff, pupils and their relatives for their support. Mr Paul Pollard, Assistant Head teacher said, “We know that by supporting LEPRA the money we raise is going to change the lives of some of the most marginalised people in the world.”
Dunfermline vs. Motherwell LEPRA Wins! A sincere thank you to Dunfermline Football Club for welcoming a team of LEPRA volunteers, led by Marion Barr and Paula Edmiston of LEPRA, to collect on behalf of LEPRA at half time on 3rd March. Supporters from both clubs raised a generous total of £300.
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Image courtesy of The Canterbury Times
A child at a primary school sold toys for LEPRA during a wintry Sunday in February.
£300 from football fans in Dunfermline
donationFORM
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Standing Order Form If you feel that you could help LEPRA Health in Action on a regular basis, we would be very grateful. Regular gifts help us plan ahead with confidence because we know we can count on your generosity in the future.
Banker’s Order
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n Other nnnnnn Every Month n Quarter n Year n Starting From: Date n n Month n n £5
n
£10
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To the Manager at
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Please pay the amount indicated on the left to LEPRA Health in Action, Barclays Bank plc, High Street,
ADDRESS
Colchester CO1 1DD Sort Code 20-22-67 Account No 80151467
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For completion by LEPRA to the paying bank
DATE
This standing order form should be returned to LEPRA and not to your bank.
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Single Donation Form I would like to make a single donation to LEPRA of £ MR / MRS / MISS / MS
INITIAL
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n Please make your cheque/postal order payable to LEPRA Health in Action n Please debit my n VISA n MASTERCARD n CAF CARD Card No: nnnn nnnn nnnn nnnn nnn Security No: nnn Expiry Date: n n / n n Signature:
by £
n Please tick if you require an acknowledgement of your gift
LN2/12
LEPRA also welcomes regular donations via direct debit. If you would prefer to make a regular donation via this method, just call 01206 216700 today and we can do the rest!
!
Please return this form to: FREEPOST RLUB-KCXE-ZRRY, LEPRA Health in Action, 28 Middleborough, Colchester CO1 1TG You will save us money if you attach a stamp to your return envelope. I confirm that I am a UK tax payer and I would like LEPRA to reclaim the tax on this donation, future donations and all previous donations that I have made in the four years prior to the date of this declaration. I also confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities or Community Amateur Sports Clubs (CASCs) that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. Signed
Date
we would like your help Pills are just the beginning Farm labourer Gobardhan (42) is pictured outside the LEPRA supported Cuttack leprosy hospital in Odisha waiting to have reconstructive surgery to help him use his hands again. Leprosy deformity left him incapacitated and unable to find work. “I thought I would be okay after the pills” he told us sadly. “Later I began to find that my hands were stiff, I couldn’t grasp the rice for the harvest or my knife to cut it. No one will employ me.” Reconstructive surgery in Odisha and in other places is made possible through the training we provide to surgeons. Dr Pati, who works for LEPRA to co-ordinate the work of leprosy organisations within the state, examined Gobardhan.
Gobardhan will need several operations to correct damage to his hands
“This is a very late case. The disabilities you see here, is negligence on the part of service providers.” Dr Pati was referring to Gobardhan’s hands, the fingers of which he is unable to straighten. “We have had a cure for leprosy for 29 years - it is possible to avoid this damage. Had his condition been monitored and steroids given at the right time, this would not have occurred.” Gobardhan will now have to undergo multiple surgeries but will be able to hold his work tools again.
back and shying away. He would be wearing shoes and looking after his feet so that they did not get dry and ulcerated.
If Gobardhan had been treated in time, he would not have thought to himself every day, “What is the point of this life?” He would have been more confident in social activities, rather than holding
Providing ‘medical cure’ is not enough. You can help LEPRA train health staff on disability prevention and ensure that leprosy disability remains on the agenda for governments.
Damage to skin will cause him lifelong difficulty
Please return the form on the reverse to: FREEPOST RLUB-KCXE-ZRRY, LEPRA Health in Action, 28 Middleborough, Colchester CO1 1TG You will save us money if you attach a stamp to your return envelope.
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