COMMUNITY MOBILISATION
SUPPORT GROUP

Sharan’s work is guided by and responsive to the needs, requests and feedback from the community who hosts our presence. The nurturing of support groups facilitates this process. Support groups in Yamuna Bazaar are loosely bound groups of people who have experience of homelessness, drug use and/ or life with HIV. The aim of the groups is to mobilize sustainable, cooperative and voluntary community based support for healthy lives and health seeking behavior.

Sharan has been supporting this concept for over a decade. The current three-year strategy began in 2002 with a short-term, renewable membership concept, which can be altered by the membership of the group. The plan has been to:

Year one – mobilize voluntary participation and local resources
Year two – transfer responsibilities to membership and provide training
Year three – consolidate organizational structure

‘Membership’ in the support group is recognized by participation in support group activities and the mobilization of resources. Voluntary participation will be encouraged by creating tangible benefits for members of the support group. For example, the activities which might make a person eligible for membership are as follows.

• Health-seeking outside of Yamuna Bazaar (plus debriefing counseling)
• Pre- or Post-test counseling for HIV
• Active participation in the abscess detection network
• Undertakes a shift on referral duty roster
• Training (in communication, cottage industry, or manufacturing)
• Contribution to savings scheme

Benefits of membership

• Entitlement to food
• Up to 5 meals for a guest accompanying the member
• Access to local bathing facility plus soap
• Decision-making role at meetings
• Opportunity for taking more responsibility in local activities.
• Opportunities for employment.

Access to food
Access to food is not guaranteed for people who stay in Yamuna Bazaar. The community has strongly advocated that unless they have access to food, efforts at prevention and treatment are futile. The support group, in collaboration with Sharan has established a system by which people engaged in and supporting health-seeking behavior secure entitlement to food. This has resulted in over two thousand people getting nutritional support over the first six months of 2004 at around 100 people per day. Local drug users prepare and distribute the food and Sharan is engaged in raising local resources, which will ensure an ongoing food security.

Access to information
There are meetings nearly every day, which are attended by between 30 and 60 people. These meetings serve the purpose of bringing information from the local area into contact with wisdom and information drawn from international science and experience. These meetings are used to establish priorities for education and for intervention.
English is not spoken by the local community, which is made up of people from across India and South Asia. In Delhi, very little information is available in Hindi, which is the most widely spoken language in Yamuna Bazaar. Of the information, which is available, even less attention has been devoted to communication, especially for illiterate and semi-literate people.
Sharan’s education aims to support all forms of health seeking behavior, from prevention of infection and illness to ensuring the earliest possible access to treatment and successful treatment outcomes.

Direct access to relevant discussions
Since the community have been meeting regularly, they have come into more direct contact with Government (e.g. DSACS, hospital staff and RNTCP), non-Government (e.g. Delhi network of Positive people, treatment centers and employment opportunities), and multi-lateral sectors (e.g. the WHO 3 x 5 delegation to India came to Yamuna Bazaar to meet with the support group to discuss access to treatment). This has enabled the community to disclose their own interests with out the need for a mediator, and it has enabled other groups to interact with the community directly. Direct access has enabled the community to assert that although they are known as homeless injecting drug users, they desire to be neither homeless nor addicted to drugs. Direct access is dependent upon the use of Hindi as the language of communication.

Mobilization of Government resources
There are two services supported by the government, which are now established in Yamuna Bazaar and operated by the community. These are a DOTS clinic for treating TB and a needle and syringe exchange programme (mentioned above). Emphasis on treatment literacy in Hindi and nurturing a higher standard of relationship and discussion between Doctor and patient has resulted in a DOTS programme which is improving its case detection and enabling adherence to the full course of treatment. Emphasis has been placed on providing nutritional support and the complexities of diagnosing TB in people who are living with HIV.
In addition to the local services, the support group is increasing its contact with Government Hospitals. The support group acts as citizen advocates and personal careers for each other and other homeless people as they seek access to emergency, outpatient, and inpatient facilities in Government hospitals.

Access to treatment
The support group continues to push towards the more comprehensive mobilization of state resources through pressing for access to anti-retroviral therapy, free treatment for opportunistic infections and a needle and syringe exchange programme, which has a more effective coverage of the IDUs in the area. This is being done through more frequent encounters with diagnostic processes, such as voluntary counselling and testing, CD4 counts, Hepatitis C, liver function tests and TB diagnostic processes. Information, education and most importantly communication in Hindi about these processes is developed from first principles through discussion, networking and the persistent pursuit of good health in a context of extreme poverty.