Role of an ophthalmologist after patient loses vision- are we doing enough?

Dear Editor:

Five years of medical school, 3 years of post-graduation, a couple more for fellowship—that is how most of the ophthalmologists are trained in our country. After a minimum of 10 grueling years, one would think, it is enough! But how much is enough and who decides that? After all these years, when we come across a patient in our clinic who is blind (without light perception), are we doing enough for them?

The thought for this correspondence to you has stemmed from this very important, yet sparingly discussed, the issue at hand. Does an ophthalmologist in his busy clinic have time, or more importantly, enough knowledge to guide a patient without light perception to the next step of treatment? Is he so focused on treating “seeing” patients that he is subconsciously ignoring “blind” patients?

India is home to around 12 million blind people, which accounts for one-third of the world's total blind population.[12] Disproportionately, we hardly have a handful of places which offer residential and rehabilitation services to blind people, and even a lesser number working towards integrating these people in the society. Of course, a lot of work is being done for patients with low vision,[34] and most of the ophthalmic centers and institutes have a dedicated department for the same. But when it comes to blind people, we need a more robust system to deal with the problem. When we started collecting data and interviewing people for this article, we realized how less the doctors know (leave aside the common man) in terms of gadgets, technology, and rehabilitation centers available to help blind people.

The most commonly discussed and used tool for the blind are assistive technologies based on the sense of body organs. These are specifically useful for patients in the younger age group, who can use these as pre-academic learning tools. Tactile-based assistive technology in form of Braille is one of the most universally used tools, and these days multiple Braille platforms are available in the form of Braille reading materials (BRM), Braille translator software, Braille dot watch, Braille keyboards; all these in addition to the conventional Braille slate and stylus.[5] Of course, availability of these is an issue along with limited books available on BRM, but it is still important for doctors to be aware of these gadgets and offer options to their blind patients, specifically blind children as it helps in their cognitive development.[6]

Technology is the next big thing that can help in the management of these patients. Simplified mobile phone software is commonly available in both android phones (TalkBack application) and Apple products (VoiceOver application). These applications can make phone use convenient for all visually impaired people. Various portable eBook readers are also available in markets, which can record up to 400 books and offer around 15 h of recorded material.[7] Another interesting software is JAWS (Job Access With Speech), which is a computer screen reader program for Microsoft Windows that helps blind users to read the screen with text-to-speech output. It is available in multiple languages such as English, French, Mandarin, and German, but not Hindi. It is licensed software and comes with a cost. Other software like NVDA (Non Visual Desktop Access) is open access, portable screen reader from Microsoft Windows, which is available in 18 different Indian languages.

Finally, ophthalmologists should be informed about residential facilities where the blind can be referred for residence and rehabilitation. Our efforts should be focused on creating a more inclusive environment for these people, and to look at them as burden carriers, instead of a burden on society. Websites like eyeway.org operate a national toll-free number: 1800 53 20469, where a team of counselors at help desks across three locations respond to a variety of queries that are made on a day-to-day basis regarding education and employment opportunities, mobility, assistive technology, and legal rights for the visually impaired. This number can be shared with the patients who are looking for counseling and rehabilitation services. Few organizations in Delhi such as Blind Relief Association (blindrelief.org), National Association for the Blind (nabdelhi.in), and Silver Linings (silver-linings.org) offer residential facilities along with vocational courses for the blind people. Table 1 discusses a list of various organizations working in Delhi for patients with different types of disabilities, and Table 2 discusses a list of organizations working for patients with visual disabilities in other parts of India. These lists are by no means exhaustive and we are sure that there may be several more working in this field, but the idea of sharing this is to make ophthalmologists aware of some of the referral points available in their respective areas.

Table 1

List of various organizations working in Delhi for people with different types of disabilities

Name and address of organization	Contact person	Contact Nos.	E-mail ID	Target group	Area of work
Institutes for the Visually Impaired National Association for Blind Sector - 5, R.K. Puram, New Delhi -22	Mrs. Banerjee (Psychologist)	26120944, 26176379, 26175886 26175886	info@nabdelhi.in	Visually Impaired	School/Training Centre
Institute for Blind Amar Colony, B.O.: Lajpat Nagar - IV, New Delhi - 24 H.O.: Panchkuian Road, New Delhi - 01	Mr. M.C. Garg (Office Secretary)	26411915, 26216506, 23364625	ifbblindschool@gmail.com, ifbandhvidyalaya@yahoo.co.in	School	VisuallyImpaired
Rashtriya Vrijanand & Kanya Senior Secondary School New Rajinder Nagar, Shankar Road, New Delhi - 60	Mrs. Shashi (Superintendent cum C.T.)	25746002, 25781370		Girls School	VisuallyImpairedGirls School
Vocational Rehabilitation Centre for the HandicappedV.R.C. Plot No. 9, 10, 11, Karkardooma, Vikas Marg, Delhi - 110092	Martin Ashish	22372704, 22378234, 22378235	delhivrc@yahoo.com	EmploymentExchange	All Disability
Action for Ability Development & Inclusion (AADI) 2, Balbir Saxena Marg, Hauz Khas, New Delhi - 110016		26966331, 26864714, 26853002 (f)	aadi@aadi-india.org	Intellectual DisabilitySchool/Training	Intellectual disability
Saksham 486, Double Storey, New Rajender Nagar, New Delhi -60	MS. Rammy Seth	42411015, 45793601, 26162707 9810043626 2874 4025 (F)	info@saksham.org	Sale of aids appliances	All Disability
Association for Rehabilitation under National Trust Initiative of Marketing (ARUNIM) 16-B, Bada Bazaar Road, Old Rajender Nagar, New Delhi -60		25752423, 9968502182	marketing@arunim.in, arunim2008@gmail.com	Marketing of products	Intellectual disability and other disability
Pandit Deendayal Upadhyaya Institute for the Physical Handicapped 4 Vishnu Digambar Marg, New Delhi- 02		23232403, 23239690 (F)	diriph@nic.in	Orthopedically Handicapped Centre/Training/College/Hospital	Orthopedically handicapped
Ali Yavar Jung Rashtriya Shrawan Viklang Sansthan Northern Regional Center (NRC) of AYJNIHHNIMH Building, Plot No. 44-A, Block -C, Sector -40, Gautam Budh Nagar, Noida -201 303		08527696052	adnrcnihh@nic.in, ayjnihhnrc@gmail.com admnrc-nihh@nic.in)	Hearing Impaired Centre/Training/Hospital	Hearing impairment
National Handicapped Finance & Development Corporation Red Cross Bhawan, Sector - 12, Faridabad - 07		0129- 2287512, 2287513, 2226910 2284371 (F)	nhfdc97@gmail.com	Loan Facility	All Disability

Table 2

List of various organizations working in a different part of India for people with visual disabilities

Name of the institution	Address	Contact number	Email ID	Programs and activities
Blind People’s Association (BPA)	Jagdish Patel Chowk, 132 Ring road, Surdas Marg Ahmedabad, Gujarat	7926305082	cbrrollout@gmail.com	Education, Rehabilitation, Livelihood, Healthcare, Microfinance
Samarthanam Trust for the Disabled	11 villa Suchita, 1st Cross, J.P. Nagar, 2nd Phase Bangalore	9449864770	support@samarthanam.org	Education, Environment, Livelihood, Health and Nutrition, Sports and Community based programs
National Association for the Blind	Valsad District branch - Civil Hospital Road, Gujarat	9909006502	nabvalsad@gmail.com	Computer Training, Music, Advocacy activities, Blind Cricket, Braille Training, Dandiya
SMT M.K. Mehta School for the Blind	Dairy Road, District - Banas Kantha, Gujarat	9427036855	mamtamandir@vidyamandir.org	Education and Rehabilitation, Vocational Training
Louis Braille Memorial School for Sightless girls	Roop Nagar, Jammu - 180013	9419286009	nfbjammu@gmail.com	Education (from 1st to 7th standard), Advocacy initiatives, Rehabilitation
JSB Free Residential School for the blind	Archakara Halli, Ramanagar, Bangalore Karnataka	080-27272860	isbsfb@gmail.com	Education (from 1st to 10th Standard), Rehabilitation, Vocational Training, Sports and Extracurricular activities
National Association for the Blind	Central Park, K.C. road, NIT Faridabad, Haryana	0129-4319232	nab80fbd@yahoo.co.in	Music learning, Computer Training, Vocational Training, Typing cum shorthand program, Home Science Training program
Devnar School for the Blind	1-10-125 Mayur Marg, Begumpet Hyderabad, Andhra Pradesh	040-66175696	bujjimanager@gmail.com	Education, Rehabilitation, Computer Training, Sports (Cricket)
H.P.I.C.S.A (Himachal Pradesh Institute for Children with Special Ability)	Sunder Nagar, Near Maha Maya mandir District - Mandi, Himachal Pradesh	8544793997	manjuandi74@gmail.com	Education, Rehabilitation and Vocational Training
Blind Person Association	Ward-11, Near Govt. Polytechnic College, Baru, Hamirpur, Himachal Pradesh	9418185866	kantpoly@gmail.com	Education, Rehabilitation, Marriages, and Vocational Training
National Federation of the blind	Near Holy heaven School, Kamlanagar, Shimla	7018754062	anil.sharma.jee@gmail.com	Education, Rehabilitation and Vocational Training
St. Micheal School for the blind	Post Office Box 1 Ranchi, Jharkhand Old H.B. road Bahu Bazaar	0651-2351782	smbsrauchijha@gmail.com	Education (Pre Primary to Senior Secondary), Rehabilitation and Vocational Training
Lakshya for Differently Able	Chandini Chowk, Hatia Ranchi, Jharkhand	9576430443	lakshyafordifferentlyable@gmail.com	Education, Rehabilitation and Vocational Training
Shree Ramana Maharishi Academy for the blind	CA-1B Cross, 3rd J P, 3rd Phase, J. P. Nagar, Bengaluru, Karnataka	080-26581076	mail@srmab.org.in	Education, Rehabilitation, Human Resource Development, Curricular activities (dance, music, yoga) and Vocational Training
Karnataka Federation for the blind	Kampanhakalli, Chikkanagluru, Karnataka	9343173402	asbckfb@gmail.com	Education, Rehabilitation and Vocational Training
Society for Rehabilitation of the Visually Challenged	5th floor, South Square Building, Near South Overbridge, Kerela	9447375864	sunil@visuallychallenged.com	Education, Rehabilitation, Music, Sports (Football and Cricket) and Vocational Training
All India Andh Stri Hitt Association	50/2365 Vijaya Deep CHS, Gandhi Nagar Bandra (East) Mumbai	9821584436	aiashaworld@gmail.com	Education, Rehabilitation, Adventurous sports, swimming, yoga, and Vocational Training
Maharashtra blind and Para Judo Association	16/265 Vishram Wadi, Sion Road, Mumbai	9819816340	parangnagda@yahoo.com	Education, Rehabilitation, Judo, and Vocational Training
Blind Persons Association	124/127 Rustom Alpaiwala Complex, Cotton Depot, Near Reay Road Railway Station, Cotton Green, Mumbai	022-2375 8680	1947.bpa@gmail.com	Educational assistance, Help the Aged Scheme, Need-based Financial Assistance, Medical Assistance, Recreational and Cultural Programs
MP Welfare Association for the blind	33 B/D, Near Indore Wire, Kila Maidan, Indore, Madhya Pradesh	0731-2410296	mpwab@yahoo.com	Education, Rehabilitation, Physiotherapy, Advocacy, Deaf-Blind Unit
Welfare Association for the blind	Manipur, SAZ road Takyal, Imphal West District	9612597519	wab80manipur@gmail.com	Education, Rehabilitation, Sports (Cricket) and Vocational Training
Samaritans Association for the blind	Durtlang Venglai Thuampui Selesih Road (Near Caravan) Aizawl, Mizoram	9862784055	blind_mizoram@rediffmail.com	Education, Rehabilitation and Vocational Training
Odisha State Chess Federation of the blind	Plot no. EB/29 Badagarh, Bhubneshwar	9439785717	oscfb64@gmail.com	Education, Rehabilitation, Chess and Vocational Training
Prayas to Ujala Blind Welfare Society for Visually Challenged	Street No. 2 Opposite Govt. College, KKP Road, Punjab	9988022865	gsbrar988@gmail.com	Education, Rehabilitation and Vocational Training
Rajasthan Netraheen Kalyan Sangh	3780, Gangauri Bazaar, Jaipur, Rajasthan	0141-2411634	info@rnks.org	Education (up to 12th class), Computer Training, Rehabilitation, Personality development and Vocational Training
Navjyoti Viklang Kalyan Evam Punarvas Sansthan	Behind Shiv Mandir Cinema, Hanumangarh, Rajasthan	9414434076	bhishmkoushik@gmail.com	Education (Class 1st to Class 8th), Rehabilitation, Yoga and meditation Center and Vocational Training
Integrated Education Implementation Committee Service Centre	37 Teachers colony, 1st Floor Alaggapan Nagar, Madurai, Tamil Nadu	9842162762	ieicmadurai@gmail.com	Education, Rehabilitation and Vocational Training
Saint Louis institute for the deaf and blind	No. 25 Canal Bank Road, Gandhi Nagar, Adyar, Chennai, Tamil Nadu	044-2491 0886	info@stlouisdeafblindadyar.org	Education, Rehabilitation, Drama, Sports, Music and Computer Training
All Tripura Blind Committee	U.K. Stadium, Agartala Office Lane, West Tripura	9774830577	1989atbc@gmail.com	Education, Rehabilitation, Sports (Cricket) and Vocational Training
Model School for Visually Handicapped	116 - Rajpur Road, Dehradun, Uttarakhand	0135-2744491	msvh@nivh.org.in	Education (CBSE pattern including Humanities in Class 11th and 12th), Rehabilitation and Computer Training (from Class 3), Sports (Yoga and Judo Karate), Co-curricular activities (Music, dance, drama)
Ahmadi School for the blind	Aligarh Muslim University, Aligarh, Uttar Pradesh	9410692868	asvemail@rediffmail.com	Education (CBSE), Rehabilitation, Computer Training, and Vocational Training, Weaving, Knitting, Stitching, NFP-classes
Blind Judo Association	VPG-16 Ramganga Vihar, MDA Colony, Moradabad, UP	9415001613	rajujudo@hotmail.com	Education, Rehabilitation, Judo, and Vocational Training
Voice of World	4 Nrisingha Dutta Road, Dutta Para, Barisha, Kolkata, West Bengal	033-25333204	voiceofworld@gmail.com	Education, Rehabilitation, Sports, Co-curricular activities and Vocational Training
Visually Impaired Cricket Association of Bengal	Sri Guru Ashram, Jagannathpur Road, Behala, Kolkata	9883767067	chandanmaityrkm@gmail.com	Education, Rehabilitation, Blind Cricket, Sports and Vocational Training
Shubham	Fardogarh Rewa road Muzaffarpur, Bihar	9431239841	shubhammuzngo@gmail.com	Education, Rehabilitation and Vocational Training
National Association for the Blind, Chandigarh and Punjab state branch	Karuna Sadan, Sector 11-B Chandigarh	9872735588	nabchd@yahoo.co.in	Education, Rehabilitation, Awareness Generation Programmes, Blindness Prevention, and Vocational Training

Attitude must be changed in this regard and currently work is being done to add topics like “what happens when disability sets in” in the M.B.B.S. curriculum to sensitize medical students. Similar workshops should be arranged for ophthalmology residents and fellows to make them visit rehabilitation centers and orient them to these facilities. Also, sessions should be organized in various national conferences where speakers from various rehabilitation centers and NGOs should be invited to speak and share their experiences with the attending ophthalmologists.

We believe an ophthalmologists' role should not be confined to merely handing out “disability certificates” to patients without light perception but should be of a counselor giving hope and information to the patient about the next steps of treatment and social rehabilitation.

Once we are able to integrate blind people in mainstream work as human resources and use their skills for the betterment of society that is when we would have done enough!

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.