Role of Non-Leprosy NGOs in leprosy programme

Participation of civil society in health care programmes is important especially in ending the neglect of serious health problems like leprosy. Leprosy is completely curable with available medicines. It is only the neglect which kills the happiness of ordinary families of persons affected by leprosy. This presentation describes specific activities which even an NGO without medical and technical expertise could take up.

1. Role of Non-Leprosy NGOs in NLEP Vijayakrishnan

2. NGO – Non government – but a legal body Government and non government organisations have same or similar goals Government and Social Scientists look upon NGOs as a partner to ensure inclusive growth and development However, there is an  increasing emphasis on non-government organisations due to the need for more humanist social action and inclusion of voices of the marginalised population Growth under Globalisation and international development so far has been favouring the rich and upper strata What and Why of NGOs

3. Key strength – closeness/proximity/ intimacy to community But can resemble government organisations in seeking power and authority Strength of NGOs – derived from being organised voluntarily, free from bureaucracy , B eing popular and people friendly, F lexibility … What and Why of NGOs

4. “There are several CBOs, NGOs and private institutions that provide a whole range of leprosy services close to the community they serve. They can be highly effective focal points for specialised services and interventions.” Page 11, Enhanced Global Strategy for Further Reducing the Disease Burden Due to Leprosy (2011-2015) Operational Guidelines , WHO. “Promoting non-profit sector particularly in under-served areas” Core Strategies – NRHM (2005-2012) Mission Document NGOs were instrumental in retaining expertise in leprosy through projects of disability care and services including reaction management, ulcer care, medical and social rehabilitation etc. NGOs and leprosy

5. We witness during the last five years Deteriorated profile of leprosy Reduced activities Reduced NGO participation Reduced funding Current status of civil society participation in leprosy

6. Starting from leprosy work Leprosy NGOs Relief Work & Patient Care Diagnosis, Treatment, MDT and PoD Non-leprosy NGOs CBR, Community Action and Advocacy Research – basic and operational Role of Non leprosy NGOs Restoring self esteem of the persons affected by leprosy is a basic component of fight against leprosy

7. (i) Planning – NGOs should be actively involved at National State and District levels in Planning, Implementation, Monitoring & Evaluation through an appropriate mechanism. (ii) Surveillance & Information System – NGOs should work with the general health system in analysis of data to study the epidemiological trends. (iii) IEC – development, implementation and evaluation of culture sensitive and area specific IEC activities. (iv) Capacity Building – on the job re-orientation training w.r.t . Prevention of Impairment and Deformity (POID), Management of complications, Diagnosis & Treatment and IEC. (v) Prevention of Impairment and deformity (POID) – The main responsibility of NGOs would be in capacity building in this area, identify selective POID activities that could be easily applied in PHC level viz. footwear, self care, dressing materials and referral of complicated cases. (vi) Rehabilitation – CBR programs, socio-economic and vocational rehabilitation. (vii) Research – Basic and Clinical research. (viii) Referral – capacity building at the Taluk and District levels, including training for reconstructive surgery. NGOs can also run tertiary referral centers. (xi) Advocacy –at various levels - Panchayats , Politicians, Parliamentarians, State/District Level Authorities (x) Case detection & MDT Delivery – No targets should be fixed and the focus should be on urban and difficult to reach and tribal areas so as to compliment the government effort. In the urban areas, the focus should be to mobilize and co-ordinate all the existing health resources. The NGOs should play a key role in this process. Role of Non leprosy NGOs