New booklet underscores key role that persons affected by leprosy have to play.
|A leprosy awareness session in Bangladesh|
Strengthening participation of persons affected by leprosy in leprosy services (SPP) by utilizing their valuable experiences of the disease is one of the WHO’s global strategies to ensure and sustain quality leprosy services. Guidelines for strengthening participation were published by the WHO in 2012.
Of late, SPP’s contribution to leprosy control has been given more attention. This is partly because leprosy has a low profile within health agendas due to the sharp decline in the number of patients over the past three decades.
As a result, the expertise found among health care personnel in leprosy services is rapidly weakening. Furthermore, multifaceted leprosy issues require many other kinds of skills and expertise in addition to health and medical, including peer support and counseling, socioeconomic empowerment, and development.
SPP is taking place in many parts of the world. However, the scale and scope differ given the diverse range of situations with regard to leprosy epidemiology, including the maturity of each group of persons affected by leprosy and the level of understanding and support of the national government.
|Good Practices is published by the International Federation of Anti-Leprosy Associations (ILEP) and Sasakawa Memorial Health Foundation, and was prepared at the request of ILEP’s Temporary Experts Group on Strengthening Participation of Persons Affected by Leprosy in Leprosy Services. It can be downloaded here: www.smhf.or.jp/e/672/|
With the aim of promoting SPP further, a handy guide has now been published, giving concrete examples of SPP activities carried out by eight organizations in seven countries. Several years in the making, Good Practices in Strengthening Participation of Persons Affected by Leprosy in Leprosy Services has as one of its aims to provide health care personnel and NGOs with practical information on how to initiate SPP activities. It introduces each organization, the work they do, the impact they have, the challenges they face, the support they receive and the lessons they have learned
But Good Practices also hopes to help persons affected by leprosy see their experience with the disease as a valuable asset—and recognize their potential to create a better society free from leprosy-related problems.
In the excerpts that follow, organizations describe in their own words some of the activities they carry out and, in doing so, communicate what SPP has to offer.
Danusha Self-Help Groups Federation, Nepal: People in the communities who want to know if a skin problem they have could be leprosy visit our self-help groups and ask us, before going to a health post. We are recognized for our leprosy work and our knowledge regarding the disease. Many of our groups have become primary referral agents for leprosy, and people seek consultation from us.
If we find anyone who has possible signs of leprosy or skin problems during our daily activities, at the market, or at work, we advise and encourage them to go for an examination to a health post, the district health office, or an international NGO leprosy service center. Some of us also actively visit homes to look for those with signs. Lately, as part of a new project, we are now able to identify lymphatic filariasis in addition to leprosy.
|Explaining about leprosy in Colombia|
Felehansen, Colombia: We know that adherence to treatment is essential, so we contact people when they are starting multidrug therapy, to reassure and inform them about the scope of the disease and encourage them to complete their treatment. We talk with them, motivate and assure them that we, who have gone through the same experience ourselves, are there to accompany them. We inform them about the rehabilitative and economic support they can get from the government. We instruct them in how to prevent disabilities and guide them in doing self-care. We also tell them about the Federation and the benefits of being organized and united.
Bogra Federation for Leprosy and Disability Development, Bangladesh: We know that many persons affected by leprosy have low opinions of themselves; they feel less worthy than others and isolate themselves from society because of shame. Rather often they are not accepted by their families, and women affected by leprosy may be abandoned by their husbands.
We provide counseling both to our peers and to their relatives. The family needs to understand what it means to have leprosy, so that they can unreservedly accept an affected member among them. For these one-to-one talks, we visit the people in their homes.
Shashemene Leprosy Affected Persons Association, Ethiopia: We want to reach different target groups with our awareness campaigns. First of all, the general community needs to understand leprosy so that they stop stigmatizing and excluding us. We also approach sectors of the government—the labor and social affairs departments—to ensure that they have a correct understanding of leprosy and accordingly increase their commitment for support. Last but not least, our peers, people affected by leprosy and their families, are in great need of knowledge and awareness about the disease, so that they can overcome self-stigma and be accepted by their families.
We organize events to raise awareness; for example, community discussions where everybody can contribute their ideas about how to reduce stigma. We have celebrated World Leprosy Day every year since 2000. We involve religious leaders to help spread a correct message about leprosy and we directly advocate with the government for the rights of persons affected by leprosy and their families.
Sam Uttham, India: We provide information to the communities in the colonies about services that are available to them, opportunities for education and training, support for livelihood and housing, and the provision of pensions, ration cards, and the Indian biometric identification card. We educate people about their rights and entitlements, and teach them how to apply and where to file reports. In cases of rights abuse, we collect evidence and conduct peaceful demonstrations and strikes to get the attention of the authorities involved.
Enterprise Self-Care Group KUK, Indonesia: We began with running an “arisan,” a traditional savings cycle, where each member puts in a fixed small amount of money every week, and one member is drawn to get the entire weekly savings. We did this very successfully, and then started a real savings and loan scheme. Later we added more sub-groups, for example to produce handicrafts together.
We developed the savings and loan scheme together with an external facilitator from an international NGO. We discussed and decided on clear rules, functions of group members and ethical codes, and put this all in writing. These rules and regulations are very important, and as a result, we have very good repayment rates and are able to continuously provide new loans to our members.
|A self-help group meets in Nepal|
Danusha Self-Help Groups Federation, Nepal: We did not stop at improving our own situation. In our communities, almost everybody is poor and we want to contribute to our village development. To identify possible goals, our self-help groups meet with community members to discuss local issues and then seek solutions together. We have, for example, organized many adult literacy classes for illiterate women. We are active in improving sanitation, wells, roads, and housing. To successfully advocate for support, we draw on our good connections with local and district government units. In the beginning, the international NGO guided us, but today we can do most things by ourselves.
“It is very satisfying to tell a person: ‘I had leprosy, too. Don’t stop your treatment! You will get better!’”