The deadly ‘acute encephalitis syndrome’ is the target for Project Prayaas, a wide-ranging community health initiative in Uttar Pradesh
In July this year, 11-year-old Garima from Pipra Muglan village in Uttar Pradesh’s Gorakhpur district developed fever, had a seizure and then fainted. What saved Garima’s life was the alertness of Malati Devi, a member of the Indian government’s ‘accredited social health activist’ (ASHA) workforce.
Ms Devi realised that Garima was showing symptoms of acute encephalitis syndrome (AES), a dreaded disease that affects the brain and can lead to unconsciousness, coma and worse. “Garima may have died if she hadn’t reached the hospital on time,” says Ms Devi. Garima could easily have been yet another statistic in the grim toll AES has taken in Gorakhpur, where the disease has run riot in recent years.
As many as 2,942 of the 4,759 AES cases reported in 2017 in Uttar Pradesh were from Gorakhpur. Children are at the greatest risk. In August 2017 alone, 62 died of encephalitis at the Baba Raghav Das Medical College, the nodal medical facility for AES treatment in the region. The tragic news led to a national uproar.
Tackling the deadly AES menace became a priority and among the initiatives adopted for the task was a partnership between the Uttar Pradesh government and the Tata Trusts to help in the state’s susceptible subdistricts. It was not an easy challenge to confront.
A complex condition, AES is actually a cluster of diseases with encephalitis symptoms, and it mostly affects children and young adults. The three most common causes of AES are Japanese encephalitis, a mosquito-borne viral infection; scrub typhus, a bacterial infection that spreads through mites associated with rodents; and water-borne enterovirus encephalitis. Some dengue and malaria cases can also spiral into acute encephalitis.
The medical solutions for AES are preventive rather than curative, and that was the starting point of the partnership programme. It was decided to take a multi-sector approach to the crisis and the effort began with Project Prayaas, a unique intervention that aims to strengthen primary healthcare services and change the manner in which the community seeks and accesses healthcare.
Slated to run for three years, Prayaas was launched in July 2018 in two subdivisions: Pipraich in Gorakhpur and Uska Bazaar in Siddharth Nagar. The intent has been to develop model subdistricts for health promotion and tackling encephalitis. These can then be replicated across the state. Prayaas also works to create awareness about the importance of identifying any illness — not just AES — in its early stage and taking treatment as soon as possible. As with Garima, this can often mean the difference between life and death.
“Prayaas is a people-based project and it is designed to bring in long-term change,” says MP Cariappa, a retired colonel who is a technical advisor with the Trusts. “What we are trying to achieve here is have people take responsibility for their health. We want to look at healthcare as prevention and promotion.”
Encephalitis is the focus for Prayaas, which has three principal components: mobilising the community, improving the delivery of primary healthcare services, and addressing hygiene and sanitation. At the community level, it is ASHAs such as Ms Devi who play critical roles. They are the ones on the ground, and at the grassroots, ensuring the sustained impact of any health intervention.
ASHAs, who can help identify an illness in its initial stage and refer the patient to a healthcare centre for treatment, are the fulcrum of the project’s fever-tracking system. They help the Prayaas team track children who need to be vaccinated and make certain they are. These workers also promote the government’s Dastak campaign, which spreads awareness about communicable diseases, hygiene and sanitation by reaching out to the community through door-to-door visits and educative sessions in schools.
Training and mentoring by the Tata Trusts’ team has enabled the building of capacity in the ASHA network. “Earlier, we weren’t sure when or how to refer a patient with fever; then we were taught the ‘traffic-light protocol’,” says Rajkumari Mourya, an ASHA with the programme. The protocol offers a simple guide to understanding the nature of the fever. Green stands for mild (not worrying but requiring treatment), yellow for a more serious situation (the patient needs to be taken to a doctor as soon as possible), and red for a crisis (where the patient has to be taken immediately to a hospital).
“We have been enabling and empowering ASHAs so that they can do their job the right way,” says Sandeep Chavan, a programme officer with the Trusts. “We enable them with respect to skills and knowledge, and empower them in terms of authority and motivation. The slogan of our programme is ‘ASHA first’.”
Data is crucial to the success of Project Prayaas. The ASHAs have been trained to maintain daily records in their diaries. As Dr Chavan explains, “If an ASHA works with 1,000 people in a village, there will be around 100 children below the age of five who need to be vaccinated. The ASHA’s record is the only way we can track these children.”
Constant handholding is a significant, and necessary, ingredient in the engagement. Prayaas conducts monthly follow-ups, which include building relationships with the ASHAs. An event called ASHA Diwas is held annually and this comprises a health camp and a felicitation function to appreciate their work. In addition, the Trusts provides financial incentives to the ASHAs (over and above the amount they receive from the government).
A mobile medical unit in Gorakhpur’s Govindpur village
It may seem obvious but it bears repetition — timely access to proper healthcare services saves lives, and this is especially true when it comes to acute encephalitis syndrome (AES).
“Research has shown that there is a delay of about seven days between the onset of fever and admission to hospital,” says Sandeep Chavan, a programme officer with the Tata Trusts. “If this delay can be managed through better primary healthcare services and prompt referral of cases, it could lead to early identification of encephalitis, which in turn means fewer fatalities.”
That’s where mobile medical units (MMUs) drive in. Project Prayaas uses these units to strengthen primary healthcare services in its areas of operation. Each MMU has a team of five — doctor, nurse, lab technician, pharmacist and driver — and is equipped with laboratory facilities that can carry out up to 50 tests.
The doctor at each MMU sees around 2,000 patients every month — children below the age of five and adults with fever get priority — and also conducts home visits where required. What the doctor and the unit deliver can be critical in the remote places where these patients live. “In earlier days, if my child fell sick I would have to go to a hospital in Pipraich or Gorakhpur, which are far away and crowded,” says Shamsher Ali, a resident of Lakhesara village. “With the MMU now coming here, we can get treatment quickly and can also have blood tests done.”
The MMUs also play an important role in the mass health communication campaigns that are run under Prayaas. Videos on various health-based themes are screened in villages and trained personnel conduct awareness sessions on health-related topics.
Given the usefulness of the MMUs, the Prayaas team plans to introduce more of these units when it expands operations. Finding resources for the units and for additional personnel is a constant challenge but the team is confident of coping with that.
The continuous mentoring has brought about perceptible change. “Working with the team has made a lot of difference because I feel more confident,” says Ms Mourya. “Whenever I get stuck, the team is always there to help me out.”
To reduce the incidence of AES, Prayaas took up ways to control the vectors that lead to the disease (rodents, mosquitoes and unclean water). The project team works closely with village councils to build low-cost soak pits that improve water drainage, spray larvicides to reduce mosquito breeding, and clear vegetation to keep rodents away. Prayaas also conducts community campaigns on health issues, safe drinking water, food safety and nutrition, and maternal and child health.
The campaign to encourage villagers to use mosquito nets treated with insecticides, conducted in July 2019, is an example. Says Ram Baran Paswan, who heads the Madhopur village council in Gorakhpur: “I got the net in my house treated and saw that it kept mosquitoes away. After that, I used government funds to buy the insecticide and convinced others to get their nets treated.”
Behaviour change and community participation can be difficult to pull off, but the Prayaas team has handled the challenge with aplomb. In the one-and-half years since implementation, the project has reached some 350,000 people.
The plus points accruing to the initiative have been acknowledged by the district administration. “The kind of community participation we have been seeing is because of the Tata Trusts’ efforts,” says AK Pandey, the district malaria officer in Gorakhpur. “Their MMUs provide the first line of screening for diseases, and we are witnessing a gradual reduction of AES cases.”
“With Project Prayaas we are working towards cleaner villages,” explains Dr Cariappa. “If you promote health, every disease, including AES, automatically gets covered. The Swachh Bharat Mission is about behaviour change for a cleaner India. Our effort is, in a sense, about bringing this mission to villages. The collateral benefit is a drastic reduction in the rates of disease.”