How eye workers can help newly blind people
8 a.m. The hospital day begins. Eighty people are queuing at the eye clinic. Eye workers, Mary and Gerard, know they’ll be busy until late afternoon. First they must see the post-operative patients. Two older cataract patients have a very good outcome after surgery. A 9-year-old child operated on for congenital cataract has a doubtful result, and cannot see any hand movement. With outpatients beginning to knock at the door, Mary has to find something to say to this child’s mother.
The woman asks whether she has to come back to the hospital, and when. What can Mary say? It is unlikely that the child will have any functional vision, even after some months. Mary has a few private words with Gerard. ‘What should I do?’ she asks. ‘Tell the mother to go to a school for the blind’, Gerard advises. Mary doubts if the child could get into that school. The mother looks very poor and the school has very few places. She decides to tell the mother to come back within a month for review. Mary now begins to see the outpatients.
11 a.m. The work goes well, it’s a routine day. Two cataract patients arrive, who are booked for surgery next week. Gerard has a special case: a 35 year old man who became blind after falling on his head. The head wound itself isn’t too bad, but probably brain damage has led to the blindness, which can’t be cured. Now Gerard is unsure, and consults Mary. ‘Do you know that man’s village?’ he asks. ‘Can you tell these people that there is a big problem, and that there is nothing we can do?’ But Mary feels that Gerard should explain the situation himself. The man is his patient!
These are all too familiar situations in eye units in developing countries. Confronted with newly blind people, many eye workers are uneasy and have little or no useful information to communicate. They feel that if surgery has not been successful, there is not much hope left.
This article explains the task and potential contribution of eye workers faced with newly blind persons. For several reasons, eye workers can have an important impact on further rehabilitation. They are the people from whom families initially try to get help in terms of eye care. They may also be the first to assess objectively irreversible blindness. They are considered specialists, and they are at hand when families face this crisis. The eye workers’ own attitudes to the crisis, and their well- or poorly- informed responses, may set people on the right or the wrong road. Families and newly blind persons may quickly sense whether eye workers are trying to avoid them, or are giving well informed and considered advice about the next steps to take.
Eye workers, referrals and transfers
Eye workers will rarely be involved in formal rehabilitation or education itself. Their role will be to refer or transfer the blind child or adult to a unit where services can be provided to improve their life and their self care skills. It is important to distinguish between referral and transfer. A referral means that the eye worker says, ‘you could go to a school for the blind, they may be able to help you there’. A transfer means that the eye worker has accurate information about the school (or other service), about conditions of admission, and will even make an appointment. Transfers are more likely to lead to services being provided later on, so eye units should be encouraged to aim for well-informed transfers rather than referrals.
When there is no treatment: can low vision work help?
If the visual impairment cannot be improved through any kind of treatment, the first question to ask should always be:
‘Will low vision therapy and consequently the provision of optical and/or non-optical low vision devices improve the use of a patient’s vision and, therefore, assist the patient to perform visual tasks more independently?’.
It is essential for each eye unit to work together with a qualified low vision specialist, e.g., Vision Therapist/ Vision Support Teacher. Of all people with visual impairments (blind and low vision), only one third (30%) are totally blind. Without effective provision of low vision services, three quarters of them (75%) would be considered as functionally blind. It is, therefore, very important to transfer a patient to a low vision specialist whenever the best possible visual acuity is less than 6/18 (less than 0.3) in the better eye, and/or the visual field is less than 20° wide measured from the point of fixation. If low vision services cannot improve the situation sufficiently, we have to consider additional systems of rehabilitation.
Which services can be provided to newly blind persons?
1. Psychological care
Even though eye units cannot usually provide formal psychological care, they can at least avoid reinforcing the new blind person’s doubts and fears. The aim should be to ensure that blind people are transferred speedily to one of the following specialist services (see 2 to 5 below), with an explanation of what support is available. The information, the transfer, and the services that may follow, will offer a positive perspective, which is psychologically very helpful at this stage.
2. Early childhood intervention
Children with congenital visual impairments need special training to support their physical development. As 80% of learning in a normally sighted child is acquired through vision (i.e., by imitation of seen behaviours/activities) the learning process in a visually impaired child has to be adapted. The child needs encouragement to learn body-movements while using other senses. In low vision, the child needs to gain awareness of visual stimuli and to learn how to respond to them. Find out whether there are community based rehabilitation programmes (CBR) or other programmes that would provide appropriate help if blind and low vision children are transferred to them.
3. Education in special schools or integrated systems
Most developing countries have one or more special schools for the blind, or annexes attached to regular primary schools, or an itinerant teacher programme supporting integrated education. Integrated systems assist the ‘normalising’ of life and opportunity for blind children, but the quality of education is often weak. Whatever the system, the aim will be to provide primary school education. Having completed primary school education, some children continue integrated education in a secondary school, but most children will return home and may then need one of the following services.
4. Functional rehabilitation by community based rehabilitation (CBR) programmes
Functional rehabilitation is provided at home and in the community by CBR programmes or by associations of the blind. They aim at increasing the activities blind people can do at their homes and in the neighbourhood, focusing on what matters in that specific community, and at that specific stage of life.
5. Vocational rehabilitation by CBR programmes or by vocational training programmes
Vocational rehabilitation services aim at providing a livelihood to the blind person. It consists of skill training, possibly provision of a small loan, and often additional training in basic marketing skills.
Which services are available? How are they accessible?
It is important for each eye unit to know which services are available in the region/country, and to have accurate and sufficient information about them. To obtain this information, a questionnaire (link below) can be used.
Make appointments and ask for feedback
Once the eye unit has collected this information about special schools, education and rehabilitation programmes that are available for blind people, a nurse or administrative person should be appointed as blind people’s counsellor. Clinicians should transfer all newly blind patients to the counsellor. The counsellor would also cooperate with the different transfer service units. He/she should visit all these units regularly, and update the information gathered by the questionnaire. In caring for each newly blind person, the counsellor should contact the respective unit (if possible) by phone, make an appointment for the patient and ask for feedback after the visit. A sample Feedback Form (link below) can be sent along with the patient.
Vanneste G. Breaking Down Barriers. How to Increase the Cataract Surgical Rate. A Practical Guide for Eye Units in Developing Countries. Christoffel Blindenmission, 2001. Available from CBM in English, French, Spanish and Kiswahili.
Name of Eye Unit …………..
Telephone Number …………..
Our eye unit, at ………….., often comes across blind people. We are collecting information on rehabilitation and education services in this area, so that we can transfer people to an appropriate source of help. Kindly complete this questionnaire, and return it to us, or attach your information leaflet.
1.What type of services does your programme provide for blind people? …………..
2. Which people are you able to help? …………..
Criteria for admission? …………..
– sex …………..
– age …………..
– vision (VA) …………..
3. How long do the services take? …………..
4. Is there an admission form? …………..
5. At which time of the year does your programme take new entrants? …………..
6. What should people bring with them when they come to your service provision? …………..
7. What is the cost of your services that has to be paid by the family (total)? …………..
8. How many people can you enlist per year? …………..
9. Whom should we contact for admissions? …………..
Telephone number? …………..
Many thanks for returning this form to the Eye Unit (address above).
Please return to: [Name of Eye Unit, Person Responsible, Address, Phone number]
Dear Director (of a Centre/School for the Blind),
We are sending ………….. who was a patient at our eye clinic.
We have no further services that might improve the vision of this patient, so would like to transfer him/her to you. Please fill in this form, and return it to us.
We appreciate your efforts.
Yours, Signed [the Responsible Person for the Newly Blind].
1. Name of person transferred and assessed: …………..
2. Are you able to assist this person? …………..
3. Why (not)? …………..
4. What type of services can you provide? …………..
5. In case there are no services that your programme can provide, is there any other programme that could help this person? …………..
6. Your name: …………..
Telephone number? …………..