Lending a Hand to Orissa with its leprosy services

1.  The need for the work

Orissa, the project area and beneficiaries

The state of Orissa, in south-eastern India, is one of the country’s poorest states. Government inefficiency has led to prevalent poverty, with academics and activists predicting that Orissa will not meet the Millenium Development Goals by 2015. 57% of the state’s population live on less than 17 pence per day. Three districts in Orissa -- Kalahandi, Balangir and Koraput -- are known as the ‘starvation corridor’ of India.

Leprosy: an indicator of marginalisation

Leprosy is a chronic infectious disease of the skin and nerves. Left untreated it can lead to loss of sensation in hands and feet, leading to disability through injury and even blindness. It is contagious through close contact and is mainly spread via droplets from the nose and mouth by coughing and sneezing. Leprosy is one of the oldest and most stigmatised of diseases. The stigma attached to leprosy which can result in rejection and exclusion means there is widespread misunderstanding about the disease. Leprosy is curable through Multidrug therapy (MDT). MDT is a combination of two or three drugs, clofazimine, rifampicin and dapsone which are taken over the course of anything up to two years. MDT combined with early diagnosis also prevents permanent disabilities by curing the disease before it causes deformities.

The gaps in government provision

Leprosy was eliminated as a public health problem (<1 case per 10,000) in India by December 2005. The second phase of the government-run National Leprosy Eradication Programme was therefore initiated: this involved trying to integrate leprosy services into the mainstream primary health care system (as opposed to having specialised leprosy centres, doctors etc, this meant that people could access leprosy treatment just as people in the UK go to their GP for a wide range of complaints). This was a huge task – and LEPRA India supported the government in setting it up. It meant that health workers needed to be trained, a network of leprosy experts created, and good monitoring ensured (so that leprosy prevalence rates didn’t rise again). Five years later, much has improved, but this project tries to address the main problem with the Orissa government’s efforts – the fact that people with leprosy-related disabilities are ignored and neglected in this system.

People with disabilities: the most marginalised

There are more than 23,000 people with leprosy-related disabilitieis in the state of Orissa. Due to very poor monitoring and inadequate census questions, this is widely agreed to be a gross underrepresentation. Disability in general has negative impacts on almost every aspect of people’s lives in Orissa. For example, 12% of disabled women in Orissa have been raped – again, likely to be an underrepresentation. 2% of all new leprosy cases are found to be affected by disabilities. The project covers the need for disability prevention care such as ulcer dressings, and the need for life-changing reconstructive surgery, in addition to strengthening the government’s ability to provide these important aspects of leprosy programming.

2. What the project has achieved so far

LEPRA set up a Technical Resource Unit (TRU) for the state with the aim of providing technical advice and capacity building as the government takes on more responsibilities.

The project has three main areas of activity:

1. training government staff in leprosy-related areas
2. carrying out reconstructive surgery and training government surgeons on leprosy-related procedures
3. managing complicated cases of disability.

This is very much a holistic project that works hand in hand with government health centres and staff and seeks to have a multi-pronged approach to ensure less people with leprosy are affected by disabilities. In addition to surgery, the project carries out the following activities:

Training doctors, surgeons, para-medical workers and general health care staff

The project targets medical college students in order to get the next generation familiar with leprosy diagnosis and treatment. Approximately 200 students per year are given the knowledge and practice they need to keep up the fight of this disease. Surgeons are provided with continuing medical education on how to correct hand deformities. 200 para medical workers (rural non-doctor health staff) are taught how to prevent disabilities in leprosy and general health staff (such as the social health activists in the photo above) are given continuing on-the-job training.

Managing leprosy reactions, ulcers and disability cases

People affected by leprosy will be provided services through LEPRA’s ten referral centres throughout the state. Special advice and case management is given to 1500 people suffering from leprosy reactions (acute painful episodes caused by the body’s immune response to the disease) per year, and 1000 people per year are provided with ulcer dressings.

Preventing disability through providing specially designed shoes for people affected by leprosy

Almost 4,000 pairs of shoes are provided to people affected by leprosy per year. These bespoke shoes are made of micro-cellular rubber. Leprosy can result in anaesthesia of the feet (i.e. complete loss of feeling). These shoes have four key characteristics: they prevent injury from heat, sharp stones and thorns etc; they are padded to reduce the effect of muscle-wasting; they have specially moulded soles which increase the weight-bearing area and therefore take pressure off; and they are rigid so that the foot is stabilised and not affected by off-balance stress.

Carrying out reconstructive surgery and following up on post-operative cases

More than 250 people will be given the gift of Reconstructive Surgery (RCS). Various surgical procedures can help to correct leprosy deformity in hands and feet, nose reconstruction and save eyesight for people who can no longer open and close their eyes. Surgery not only restores the function to hands and feet, it also conventionalises their appearance. This increases the possibilities for acceptance within communities.

3. Monitoring and Evaluation

We will know that we have achieved these results through analysis of data generated through the project and through focus group discussions with beneficiaries.  If you should fund Lending a Hand, you will receive an end-of-funding report, regular news bulletins and updates whenever you require them.