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Our projects


Restoring the lives of forgotten people

Our project in Samastipur district of Bihar state in India, we are helping 120,000 people who are affected with lymphatic filariasis and leprosy, and living in extreme poverty.

The facts:

Samastipur is a district in central Bihar in India. It has 7 of the country’s most endemic blocks of lymphatic filiarisis (LF) and leprosy. In 2015 we began a 5 year project to address the needs of those living with LF or leprosy and we are now entering our fourth year of the project.

The aim:

Over the course of the five years we plan to help improve the lives of 120,000 people (116,000 with LF and 4,000 with leprosy) living in poverty with either LF or leprosy. We want to help them lead healthier, more productive and self-sufficient lives.

What exactly are we doing?

We are taking an integrated and holistic approach tackling not just the health issues but looking at the prejudice and discrimination associated with leprosy and LF too. We are doing this by:

  • running leprosy and LF awareness raising activities in 465 villages
  • facilitating hydrocelectomies (surgeries for men who have swollen genitals)
  • providing protective footwear to 20,000 people
  • starting up a network of LF patients in the area so they are able to advocate for their rights
  • training healthcare workers and doctors to better address the needs of LF and leprosy patients

Early detection is a big component of the Samastipur project. If people with LF and leprosy are able to get help at an earlier stage it will mean the likelihood of having to live with a permanent disability will be significantly reduced.

In order for us to detect cases earlier though, people need to feel they can come forward and that means reducing the prejudice around these diseases so they feel they can. This is why it’s important to raise awareness through activities and by training our staff to recognise the symptoms.

What have we done so far?

We have had a successful first year in Samastipur getting our project off the ground. We hired 26 great staff members and set up our new offices in the region. As a part of that we’ve taken a wonderful group of women who will go out into the field and talk to people in the community hopefully finding those who may be too afraid to come forward for treatment.

We’ve also worked hard to get all of the right government papers in order so that the public health centres have all they need to start undertaking surgeries for those whose LF symptoms have become so extreme they require operating on.

In order to steer our work for this project effectively, we commissioned a survey to help us identify where the gaps are in healthcare services and also where the gaps are in knowledge when it comes to neglected diseases.

What's in store for a year or two?

Well, this is where we really get going and can start making a difference. Our counsellors will soon go out and spend time talking to men with hydrocele and their wives about having a hydrocelectomy to reduce this LF symptom. Over the five years we hope to facilitate 10,000 hydrocelectomies. The counselling should help to dispel any myths about it being a dangerous surgery so that more men with extreme genital swelling feel they can come forward for the corrective surgery.

Out of 7 public health centres in the area there are 5 we need to get set up with performing the surgeries so we’ll be talking to them in the hope that we can work together to help more people.

We’ll also be training staff and promoting self-care groups.

How can you help

Donating just £15 could provide five people affected by LF with vital self-care kits including soap, oil, towels and disinfectant. These are so important in helping them reduce the painful symptoms they experience.

 

5 year Update

The project began in 2015 with activities taking place initially across six Blocks – Pusa, Bithan, Samastipur, Warisnagar, Khanpur and Singhiya. During the course of the project, two additional blocks were included – Morwa and Kalyanpur.

The overall aim of RLFP was to improve the health outcomes and psychosocial and financial wellbeing of the people marginalised by leprosy and LF, to enable effective community mobilisation and create sustainable health responses to leprosy and LF.

We took an integrated and holistic approach tackling not just the health issues but looking at the prejudice and discrimination associated with leprosy and LF.

We implemented this by:

  • running leprosy and LF awareness-raising activities
  • facilitating hydrocelectomies
  • providing custom-made protective footwear
  • creating a network of self-support groups to promote appropriate health behaviour, identify and advocate for people’s rights
  • training healthcare workers and doctors

By the end of the project in 2020, we had reached 121,217 people affected by leprosy and LF with timely treatment, care and support.

Our integrated care approach has shown a substantial improvement in the health outcomes for people affected by leprosy or LF. Community initiatives have also helped to reduce discrimination or prejudice encountered by people affected.

By the end of the project, our work with RLFP demonstrated impact across health and wellbeing outcomes. Some highlights include:

  • Reports of leprosy-related ulcers reduced from 30% in 2018 to 17% in 2021. Women were half as likely to report having had ulcers than men.
  • One in five people affected by LF reported having had an acute attack recently (a debilitating form of inflammation in the affected part of the body), compared to 65% in 2018.
  • Reporting practicing daily self-care, a key to reducing the risk of disability, doubled since 2018 for both leprosy and LF, reaching well over 90% of the people affected
  • About 91% of participants affected by leprosy and 83% of people affected by LF, reporting attending social events, whereas only about 65% did so in 2018
  • Only 12% of participants affected by either leprosy or LF falling under the poverty line (i.e. USD 1.9 per day), compared to approximately 42% in 2018
  • On average, people affected by leprosy reported spending 80 Rs a month on medicines related to leprosy, compared to 500 Rs in 2018.
  • About 98% of non-affected community participants agreed that people affected by LF could marry and about 95% of non-affected community participants agreed that people affected by leprosy could marry, compared to 44% for LF and 21% for leprosy before the intervention

However, people affected by LF still reported feeling discriminated against by the wider society with 33% of participants affected by leprosy and 30% affected by LF reported feeling excluded from society. One explanation may be that beneficiaries met with discrimination in the wider society while widening their social networks.

The RLFP project resulted in improved daily self-care practice and a decrease in ulcers, it halved the possibility of disability amongst beneficiaries, improved income, and decreased health care expenditure. It also increased social participation amongst the local and wider community. We still need to work on advocacy platforms to continue to reduce prejudice and discrimination in the wider society.