SUMMARY OF THE DIABETIC RETINOPATHY AND RETINOPATHY OF PREMATURITY INITIATIVES IN INDIA MID-TERM REVIEW

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1 SUMMARY OF THE DIABETIC RETINOPATHY AND RETINOPATHY OF PREMATURITY INITIATIVES IN INDIA MID-TERM REVIEW Review conducted by Amaltas, India. Submitted January 2017

2 AN INDEPENDENT REVIEW OF THE TRUST S DIABETIC RETINOPATHY AND RETINOPATHY OF PREMATURITY INITIATIVES IN INDIA HAS PRAISED THE PROGRESS MADE IN TACKLING THESE DISEASES. Diabetic retinopathy is a complication of diabetes, and if left untreated, can lead to irreversible blindness. Many people with diabetes are not aware they have the condition, and by the time their vision deteriorates it is often too late for treatment. Regular screening, and early treatment, as well as careful health management is important to prevent unnecessary vision loss. The Initiative is supporting patients with both Type 1 and Type 2 diabetes. Retinopathy of prematurity, caused by damage to the retina, can lead to total and irreversible blindness in premature babies. It affects preterm infants whose retinal blood vessels are not fully developed at birth. An affected child may never see light. The Queen Elizabeth Diamond Jubilee Trust s Initiatives are increasing awareness of both diseases across India and providing vital screening and laser treatment. The Initiatives are training doctors and nurses on how to provide high quality care in order to reduce the risk of these complications of preterm birth and diabetes. Patients and their carers are also being counselled to help manage these diseases. This will prevent more premature babies and people with diabetes from needlessly going blind.

3 STATE GOVERNMENT BUY-IN IS HIGH AND THE NATIONAL GOVERNMENT HAS BOUGHT INTO THE NEED AND MODEL FOR DELIVERY. The Trust s Initiatives support the work of the Indian Ministry of Health and build on the government s existing health programmes for diabetes, neonatal care and avoidable blindness. The Initiatives are also working with private partners to build on the existing capacity of doctors in the public health system. This dual approach has the potential to be replicated across the country and to provide long-term sustainability. The Initiatives are being managed by the Public Health Foundation of India with support from the London School of Hygiene & Tropical Medicine. The goal of the mid-term review, conducted in 2016, was to evaluate the progress made so far, and to provide recommendations to maximise the impact of the Initiatives.

4 KEY FINDING: THIS INITIATIVE OF WORK WILL YIELD A LASTING BENEFIT TO THE PEOPLE OF INDIA Public Health Foundation of India

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6 DIABETIC RETINOPATHY PILOT DISTRICTS IN SELECTED STATES ARE NOW PROVIDING EYE SCREENING AND LASER TREATMENT FOR PATIENTS WITH DIABETES WHO ARE DEVELOPING SIGHT-THREATENING RETINOPATHY. In 2014, the Initiative held a national Diabetic Retinopathy Summit, to bring together key experts and form a National Taskforce. The Initiative supported a nationwide research project to understand what kind of care is available for people with diabetes and diabetic retinopathy. The findings were used to target the work and maximise impact. 162 physicians from across India have completed a course to help them integrate eye care for diabetes patients into their daily routine. The course has received favourable feedback from participants, faculty and service providers. The course is now being turned into an online platform to make it accessible to more eye health professionals.

7 DELHI RAJASTHAN GUJARAT WEST BENGAL ODISHA MAHARASHTRA GOA KERALA KARNATAKA TELANGANA ANDHRA PRADESH TAMIL NADU INDIA STATES IMPLEMENTING THE DIABETIC RETINOPATHY INITIATIVE

8 FINDINGS AND RECOMMENDATIONS THE INITIATIVE HAS ESTABLISHED A PRECEDENT OF COLLABORATIVE WORK BETWEEN GOVERNMENT AND NON-GOVERNMENT ORGANISATIONS IN DELIVERING EYE CARE SERVICES. THIS WILL SUPPORT FUTURE EFFORTS TO IMPROVE EYE HEALTH ACROSS INDIA. Moving forward, planned communications need to ensure that doctors and patients have all the necessary information about the risk of losing sight to diabetic retinopathy. This will ensure that all patients are aware of the need to get their eyes screened every year and that improving management of their diabetes reduces the risk of sight threatening retinopathy. The National Task Force can now explore how to expand the Initiative across India. It is important that health professionals from the diabetes sector continue to attend Task Force meetings to ensure broad support for the Initiative.

9 Aravind Eye Hospital

10 RETINOPATHY OF PREMATURITY MODEL PROGRAMMES HAVE BEGUN IN SELECT STATES, PROVIDING VITAL SCREENING AND LASER TREATMENT FOR PREMATURE BABIES WITH SIGHT-THREATENING RETINOPATHY AND IMPROVING THE QUALITY OF NEONATAL CARE. The Initiative established a National Taskforce, led by the Government of India, to bring together leading experts and improve policies and practices. A National Summit, held in 2013, helped to launch the Initiative and raise awareness of the disease. The Initiative has funded a nationwide research project to identify where work will have most impact and in collaboration with the Ministry of Health, has supported the development of national guidelines about how to prevent visual loss from retinopathy of prematurity. Training neonatal nurses and the doctors who care for preterm infants is also being emphasised as this reduces the risk of babies developing this sightthreatening disease.

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12 MADHYA PRADESH ODISHA MAHARASHTRA TELANGANA INDIA STATES IMPLEMENTING THE RETINOPATHY OF PREMATURITY INITIATIVE

13 KEY FINDING: QUALITY HAS BEEN PUT FRONT AND CENTRE PARTICULARLY IN THE WORK DONE WITH SPECIAL NEW-BORN CARE UNITS Public Health Foundation of India

14 FINDINGS AND RECOMMENDATIONS THE INITIATIVE IS IMPROVING THE OVERALL QUALITY OF CARE IN SPECIAL NEW-BORN CARE UNITS. THESE CHANGES IN PRACTICES NEED TO BECOME STANDARD OPERATING PROCEDURES TO ENSURE THAT QUALITY OF CARE IS MAINTAINED. More work is now required to ensure that premature babies who are diagnosed with sight-threatening retinopathy of prematurity are able to attend follow-up appointments for treatment. This includes further counselling with the parents of new-born babies. There is a shortage of staff and equipment in government hospitals caring for premature babies. The Initiative will continue to advocate with state and national governments to ensure that there are sufficient resources to provide high quality care in India. This summary document has been prepared by PHFI and the Trust.