Last Updated:  07/04/2022

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Project Pitch By: Jan Swasthya Sahyog

 

Proposed Project Title


Sickle Cell Anemia Control Mission

 

Thematic Area

Eradicating hunger, poverty and malnutrition, promoting health care, sanitation & safe drinking water

Sub Thematic Area

Hospital infrastructure, medical camps, surgeries, healthcare awareness & rehabilitation

Project Synopsis

Sickle Cell Disease (SCD) is a deadly disease affecting 10-33% (Around 1 million) population in Madhya Pradesh. Anuppur, Dindori, Mandla, Shahdol, and Umaria districts have very high positivity of SCD. In August 2018 Jan Swasthya Sahyog took initiative with the National Health Mission Bhopal to work on the disease in the state & showed tremendous results. Seeing these results, in November 2021 MP government adopted many components of the JSS’s project and launched their Sickle Cell Mission. Still, there is a dire need for the proper & comprehensive management of the patients. JSS is continuing the project with the objective to provide comprehensive care & management to SCD patients including Public Health System capacity building, counseling, Patient management through Peer support group meetings in those districts, & implementation of research around SCD deaths by doing their reviews to understand the different aspects leading to the death of an SCD patient to make a strategy.
 
 
 

Overview of the Proposed Project

Estimated Budget
INR 1.0 Cr - INR 5.0 Cr
Proposed Location
Anuppur, Dindori- Mandla-Shahdol-Umaria-Sidhi, Madhya Pradesh

Key Project Partners
Government

Project Status
Active
 

Facts

Beneficiary Type (Primary): Women
Beneficiary Type (Secondary): Children
Estimated No. of Beneficiaries: above 10000 Individuals
Status of Baseline Survey: Already Done
 
 
 

Proposed Project Description

Jan Swasthya Sahyog (JSS) started this project in August 2018 in 6 districts of eastern Madhya Pradesh (Anuppur, Shahdol, Umaria, Sidhi, Dindori, and Mandla) under the banner “Sickle Cell Anemia Control Mission” for the management of the Sickle Cell disease. JSS started it with the support of the National Health Mission Bhopal and continued it further. JSS unearthed the burden of the disease through this project in these districts. Because of the data of the project National Health mission has launched its mission to manage sickle cell disease but still, it needs lots of improvement where we are supporting them. JSS is working on the ground for the betterment of Sickle Cell patients. 

 

Component 1: Capacity Building - Strengthening of the public health system for the Management of SCD:

  • Improving the diagnostics services in PHCs, CHCs, & DH (District Hospital). 
  • Improving the screening & treatment services in District Hospital, all CHCs (Community Health Centers) & all PHCs (Primary Health Centers) for Sickle cell Disease.
  • Ensure availability of screening kits, diagnostic services, and drugs (Hydroxyurea, Folic Acid, Tramadol, Deferasirox, & Morphine) in DH & CHCs by taking follow-ups with DHS & state to help manage these patients.
  • Developing the standard treatment protocols for Sickle Cell disease, draft from JSS side is ready and submitted to state blood cell department for publishing it officially. This will require multiple follow-ups with multiple state health departments.
  • Training of medical professionals for the diagnostics, treatment, & care of patients-
  • Fresh training of one medical officer & specialists of all the CHCs & of DH who are untrained, Nodal officers for hemoglobinopathies & one backup doctor for the Nodal officer from DH.
  • Training of selected staff nurses of DH for SCD patient care. (Nursing in-charges of all departments/wards like Maternity wing in charge, NCD clinic Nurse, ANC clinic nurse, 6 nurses for SCD ward /daycare unit from DH). Quarterly case discussion online.
  • Training of Lab technicians of all PHCs & untrained LTs of CHCs for screening.
  • Supportive supervision of all the trained Lab Technicians for the improvement of diagnostics services, & of all trained CHOs (Community Health Officers) to build the field sickle cell screening facility in the public health system. 
  • Creating awareness about the disease among medical service providers & the community.
  • Improving blood availability in the blood banks of Anuppur & Dindori District Hospitals to ensure blood transfusion of SCD patients without the need for replacement.
  • Implementation research on the effect of PSG Meetings & regular usage of Hydroxyurea

 

Component 2: Community-level work on Sickle cell Screening, Diagnosis, Counseling, & Patient Management. This will be done in all the villages of 2 districts Anuppur & Dindori.

  • Community level screening by CHOs in the area covered under Health & Wellness centers
  • Training of all CHOs in a phase-wise manner for screening & conduction of patient support group meetings.
  • Supportive Supervision of CHOs to support them after training for implementation, conducting tests, and improving the quality of tests.
  • Screening All pregnant women & husbands of positive pregnant women by CHOs.
  • By the PMU (Project Management Unit) - Screening of Newborn babies with AIIMS Bhopal by using a special paper
  • Counseling of all the patients and most relatives diagnosed with sickle cell disease.
  • Management of patients through Patient Support Group Meetings up to CHC level. 
  • Collection of the screening, patient follow-up, patient baseline, & counseling data using an android-based app. 
  • Death reviews of the Sickle Cell Patients, their scientific analysis & publication for planning strategies on prevention. 
  • To understand the ways to reduce sickle deaths in the future.

The major achievements are the following-

  • Solubility kits for Sickle Disease screening are now available in the State Rate Contract and are available up to Primary health centers in these 6 districts.
  • In these 6 districts, 164 govt lab technicians, 138 govt doctors, 48 govt Community Health Officers, and 20 govt staff nurses in the Anuppur district have been trained by JSS. 1800+ ASHA, ANM & ASHA Sahyogini has been sensitized. All these care providers are now sensitized & knowledgeable about the disease, its diagnosis, complications, and management. The community is also becoming aware now and the community is coming to the facilities, to take benefit from these facilities related to sickle cell diseases.
  • After training and supportive supervision Sickle cell Screening, treatment, & counseling have been started in Anuppur & Dindori districts. The model has been scaled in a total of 6 districts of MP.
  • An android 'App' has been developed to directly collect data of people screened in the field. This app collects data even in offline mode and can be synced with the server when the user is in network range. Monthly follow-up of patients is also recorded in the app.
  • So far in these 6 districts, 2,18,369 people have been screened for Sickle cell Disease by JSS & Government Lab Technicians, a total of 22,187 (AS) & 2563 (SS) identified.
  • Community screening revealed that the prevalence of sickle gene in the Anuppur district is more than 20%, & in Dindori it is 25%+ which is a shocking fact in itself. It also says that sickle cell is a big problem in the district, due to which the life of the people is being affected badly, and more work is needed to improve the facilities for the management of the disease.
  • The treatment protocol for sickle cell disease has been developed and sent to the National Health Mission Bhopal for the official launch of it. Which is under process with NHM Bhopal.
  • Awareness videos, Flex, Myth breaker, and pamphlets have also been developed for the awareness of sickle cell disease. Flexes are installed at all health centers in Anuppur & Dindori, also in the other 4 districts up to the CHC level. Counseling booklets for patients, diet charts, & other IEC materials have also been developed. Out of these states has adopted 3 materials now.
  • Madhya Pradesh State has adopted this model of disease management and launched a Sickle Cell Mission in Western Madhya Pradesh for Alirajpur and Jhabua districts. The state is further planning to implement it in 14 other affected districts of Madhya Pradesh.

 

 
 

Salient Features

  1. Door to door Community level sickle cell screening of pregnant women, husbands of positive cases, & 1st degree relative of positive case.
  2. Regular “Patients Support Group (PSG) Meeting” for Identified SS Patients to provide them management of the disease.
  3. Strengthening the system to be able to screen, diagnose and treat those suffering from this disease.
 

About Jan Swasthya Sahyog

“Health work with humanity”


These words explain the motto of Jan Swasthya Sahyog (JSS). The organization is working on public health since 1996 to develop a low-cost and effective health program that provides both preventive and curative services in the tribal and rural areas of Chhattisgarh & Madhya Pradesh in central India. We strongly believe that access to healthcare should not be denied to anyone due to lack of money or due to discrimination on account of caste, sex, religion, social class, etc. We have a 100 bedded hospital that provides all types of medical & health services at a low cost with a human touch. JSS is working on public health system strengthening in Chhattisgarh with NHM Bhopal. We have community-level interventions on health, agriculture, & livelihood in Bilaspur district in the villages under the Achanakmar Tiger Reserve. JSS is researching to develop & provide appropriate health & technological solutions. Our values include Honesty, integrity, Respect for the poor, the village folk, an understanding of their problems, and an unfailing commitment to them shall inform and permeate all our work. Compassion and respect for the wholeness of human beings


For more details please visit our website - https://www.jssbilaspur.org/vision/

 
 

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