NEPAL LEPROSY TRUST
Leprosy has been feared in almost every culture for hundreds of years, in view of the considerable deformities and disabilities it can bring, the absence of any effective treatment (until the 1940s) and mystery surrounding its causes. People showing signs of leprosy have traditionally been shunned, as community members have feared infection or contagion.
Leprosy is now known to be a chronic, infectious disease of slow onset. It essentially affects peripheral nerves, and can now be medically cured simply and cheaply through multi-drug therapy (MDT). Eradication of the disease worldwide is now a realistic goal. However, the stigma associated with leprosy remains a major problem. Those affected by leprosy are marginalised, suffering continual psychological, as well as physical, distress.
Without the benefits of pain, those affected by leprosy have difficulty in the daily routines of life and are unprotected from bodily damage that ordinarily would be avoided. Even when wounds are apparent, the demands of life for those trapped in poverty deny them opportunities to avoid infection or further injury. Infection thus tends to lead to deformity and ulceration; and these lead to ostracism – resulting in further social and psychological damage. Escalating marginalisation increases the probability of more physical damage, and thus, an apparently inexorable vortex of physical and social disaster accelerates.
1. Leprosy Services
NLT’s Leprosy Services Centre at Lalgadh, southeast Nepal, serves four surrounding districts which have the highest prevalency of leprosy in Nepal. It provides:
- examination and diagnostic services for a range of leprosy-related and general medical conditions;
- in-patient and out-patient treatment services, including multi-drug therapy (MDT); treatment of reaction, neuritis and complications; reconstructive surgery; prevention of impairment and disability; foot-care; and physiotherapy;
- recording, reporting and following-up those people who default from treatment.
Lal Gadh is now probably the busiest leprosy centre in the world. In 2006/7 there were 40,000 patient visits and 1,000 new cases were diagnosed.
2. Prevention of impairment and disability (POID)
NLT aims not only to provide the appropriate cure for those affected by leprosy, but also to prevent and manage impairments and raise the level of functional ability for those with impairments. Health education, training, out-patient services, surgical and rehabilitation programmes are some of the means used to achieve this. POID also includes provision of special footwear and appliances, physiotherapy, wound care and POID clinics in the field.
The Self-Care Training Centre at Lalgadh plays a vital role in enabling people to take individual responsibility for avoiding bodily damage, such as burns or foot ulcers, that can result from a loss of feeling. This helps ensure the successful rehabilitation of cured people back into their communities.
NLT aims to empower those affected by leprosy to re-enter society and function effectively within it, equipped with new skills. The Self-Care Training Centre provides residential training to equip individuals practically and psychologically to participate in family and community life again with everyday living and working conditions. Self-help groups are established to enable those re-adjusting to everyday life to meet challenges together.
4. Capacity Building
NLT’s work at Lalgadh supports the government’s Leprosy Control Programme. Part of this work involves building up the capacity of ‘grassroots’ health workers and other influential community groups and leaders, for more effective leprosy control. A purpose-built training centre at Lalgadh facilitates this. One feature of this programme is the mobilisation and training of people affected by leprosy to become important contributors themselves in leprosy control.
5. Community Awareness
NLT’s work is steadily adopting a greater community thrust. The goal is to reduce lack of understanding about leprosy and help build a supportive community for all those affected by the disease. Street drama, for example, is used to convey essential facts about leprosy and encourage those with skin conditions to come forward for tests. A pioneering feature is the inclusion of people who have been affected by leprosy in such teams.
6. Stigma elimination
The major principle in all of NLT’s activities is to reduce the stigma that wrongfully and unjustly surrounds leprosy. It is aimed to promote the full participation in society of all those affected, including family members. NLT’s Stigma Elimination Programme (STEP) now provides the governing rationale in all that NLT does.
The Everest Marathon Fund has:
- Purchased ten motorbikes to make travel easier and quicker for staff visiting outlying health posts.
- Paid £4,500 for a new podiatry unit opened at Lal Gadh Hospital; this was used to pay the salaries of three shoe-makers and raw materials for one year.
- A further £1,000 was given to train a prosthesis technician.
- £4,000 has helped to fund a project to train people who are themselves affected by leprosy who will be able to identify and refer those with the early signs and symptoms of leprosy to prevent disability occurring.
- We have funded a further training programme for people affected by leprosy with professionally produced self-care videos and other training material.
- The money donated in 2002 was used for work in the villages. There is a team of 15 ‘default tracers’ who tour the villages by bicycle checking that patients are continuing and do finish their treatment. Leprosy, like TB, can easily be treated with multi drug antibiotic treatment but it is essential to complete the drug course. After treatment at Lal Gadh, many people return to their villages and do not realise the importance of completing the treatment.
- A leather machine was purchased for Himalayan Leather Handicrafts, a fund-raising trading branch of NLT in Kathmandu where people affected by leprosy manufacture high-quality leather products (bags, wallets, etc).
- 60 bedside cabinets and an electric floor scrubber for Lalgadh hospital and a tempo for transporting patients from the bus stop to the hospital.
- £5,600 for salaries and patient care at Lal Gadh.
- In 2010 £7000 was used to help purchase a vehicle for staff to visit rural community projects and £2000 for a diagnostic microscope.
- Our 2011 grant of £9000 has been used to buy surgical equipment for a newly renovated operating theatre.
- In 2013 we purchased a new operating table and LED operating theatre lights for Lal Gadh hospital.
- In 2018 £3000 is being given to build specially adapted housing and village latrines.