Booklet  Examining People with Learning Disabilities, Section two:

Communicating

When interacting with people with learning disabilities we should be aware of possible difficulties with speech, vision, hearing, coordination, understanding and social skills. We should take time to familiarise ourselves with the individual’s preferred method of communication, their likes and dislikes and any idiosyncrasies in expression.

Before undertaking any eye examination we need to obtain information from the patient regarding their symptoms, ocular history, general health and visual requirements. During the examination information is exchanged to explain what we are doing, what is required of the patient and of course their responses to subjective examinations. Finally we sum up our findings and explain our clinical advice to the patient. To carry out all of these tasks we communicate with the patient.

This transfer of information usually takes place using speech and language as the main means of communication, although we also use many non-verbal clues such as facial expression, body posture, hand movements and eye contact to complement this. Most of these means of communication are learnt from earliest childhood in social interaction with others. From this we learn acceptable norms of behaviour and of course rely on many senses and good coordination of movement in order to execute these skills effectively.

When interacting with people with learning disabilities we should be aware of possible difficulties with speech, vision, hearing, coordination, understanding and social skills. We should take time to familiarise ourselves with the individual’s preferred method of communication, their likes and dislikes and any idiosyncrasies in expression. The best way to do this is to discuss these matters with carers and relatives before meeting the patient and also if possible to observe the patient interacting with others for some time. This is much easier to do in a domiciliary setting as the patient’s normal care team will usually be present facilitating history taking, obtaining information on any apparent visual difficulties or changes in behaviour and of course obtaining information regarding communication techniques. The patient will be at ease in familiar surroundings and mobility skills, social interaction and other functional visual skills can be observed before any more formal examination takes place.

Pre-Examination Questionnaire

Pre-examination questionnaires are useful in obtaining information about the patient and also concentrating staff and carers’ minds on the sort of information which will be useful in assessing visual function. Another useful aspect using this type of document is that of allowing the care team time to discuss the patient with colleagues and hopefully give a comprehensive insight into any concerns or questions which may need to be addressed during the examination. Pre-examination questionnaires of this type are very helpful where patients are examined away from the normal care setting, or when regular members of the care team are unable to attend the examination to answer any questions the optometrist may have.

There are many different formats of pre-examination questionnaires in use by different organisations, but most cover basic information such as name, date of birth and information on eligibility for NHS vouchers, medical details, such as information on the condition causing the learning disability (if known), any medication, family history, known ocular conditions and previous ocular history, a section on any visual concerns the team may have, unexplained behaviour, observed behaviour and basic functional vision information. Further details of the preferred communication method such as, whether the individual is able to read, knows letters (upper or lower case), will name pictures, can perform matching tasks, will understand verbal instructions etc can all be recorded. Information on disabilities such as hearing impairment, motor control, and whether the person is a wheelchair user can also be established. A pre examination form entitled ‘Telling the Optometrist About Me’ can be downloaded from www.lookupinfo.org. 
 

Preparation For The Eye Examination

Many of our patients with no disabilities are very anxious when they attend for their eye examination. This may make them behave out of character, give misleading answers and generally perform much worse than they would if they were more relaxed. The reasons for these anxieties are very varied but include fear of failure, fear of significant pathology being found, concerns that they may say or do something silly, and the anxiety of being in close proximity to a stranger. Through social experience and rationalisation of our fears and concerns most of us are able to perform adequately in these situations although many people are never completely at ease.

When examining people with learning disabilities we must remember that they may have all of these concerns along with other difficulties such as poor understanding of the testing procedure and what is required of them; they may wonder why their routine is being interrupted by strangers with bright lights and questions or worse - drops which sting. They may have real issues with meeting strangers or having their personal space invaded. It is hardly surprising therefore that sometimes eye examinations prove difficult to complete even for the most sensitive practitioner.

When an eye examination for someone with learning disability is first suggested, an assessment should be made by their care team (preferably in consultation with the optometrist or an experienced specialist worker in this field) of whether they are likely to have any problems in undertaking this task. Most people with mild or moderate learning disability will be able to attend a normal high street optometrist’s practice and perform well. However, it should not be overlooked that this group of people may have difficulty comprehending the idea of ‘going to a shop between the bank and butchers, being taken into a dark room with a stranger, being asked lots of funny questions and having lights shone into their eyes’; so explaining what is going to happen before the visit or even having a few ‘dry runs’ where no examination takes place but the patient visits the practice and sees the consulting room may help.

For people with more severe learning disability their ability to comprehend verbal information as to what is to take place in an eye examination may be limited. In these cases attempting or certainly completing any tests during an eye examination without preparation may prove impossible. This is often not because the individual cannot perform the test or cooperate with a procedure but that in the limited time available during an eye examination they are unable to understand what is required quickly enough. To enable the eye examination to proceed smoothly it will often help if staff and carers (or a specialist worker) can spend time coaching the individual on what is required of them and how to perform a certain test.

Examples of this sort of training would be the introduction of the concept of matching tests, initially with objects or symbols of the same size then later with the same object but different sizes. Although the concept of a large letter or symbol being the ‘same’ as a smaller similar letter or symbol is easy for us to grasp, this may not be the case with some patients with learning disability. Similarly a two dimensional drawing of an object may have less meaning than a three dimensional object. Another procedure which can be practiced is having lights shone into the eye, this should be done with a low powered pen torch initially with people known to the patient and from some distance away, gradually reducing the distance to mimic the proximity of direct ophthalmoscopy, finally gaining acceptance of a stranger performing these tasks. The time taken to perform this training should not be under estimated; it may take up to nine months of consistent work to enable adequate comprehension of relatively simple tasks. A range of factsheets about preparing for an eye test can be downloaded from www.lookupinfo.org and SeeAbility’s information and advisory services team can also provide specialist support and advice to carers and people with learning disabilities on this issue.

At this point we should remember to remind staff that if there are concerns about a person’s visual ability or ocular health, then an examination should not be delayed with ‘preparation and training’ as there may be some pathology causing the difficulties which requires urgent attention. If the optometrist is unable to obtain satisfactory results in their initial examination of the patient but is suspicious of significant pathology then they can decide whether intervention such as examination under anaesthetic at hospital is needed to rule out significant pathology, or whether the apparent difficulties are an artefact of poor understanding of or compliance with the test or visual environment.

Communication during the examination

When we are training as optometrists we are all reminded not to slip into ‘optometric jargon’ when performing eye examinations and are told not to use phrases like ‘fixate the duochrome’ but to say ‘please look at the red and green lights in the mirror’. Over the years many practitioners do start to use their own shorthand phrases for different instructions, or even just move pieces of equipment towards patients expecting them to know what to do (such as putting their chin onto a slit-lamp chinrest as the instrument is swung towards them). When dealing with nervous patients more explanation of tests is needed and this is certainly true when dealing with patients with a learning disability.

The form of language used should also be carefully considered and broken up into manageable pieces. An extreme example of this would be the following set of instructions: When reading the following sentence carry out the instructions as quickly as possible or better still read this out to a colleague or relative and see how quickly and accurately they perform the task: Place your right index finger on your left patella and using the palm of your left hand cover your right eye.

Now consider the following: Show me the pointy finger of your right hand. Put this finger on your knee (no the other knee if the wrong one is chosen). Now cover your eye with your other hand.

By breaking the sentence into manageable chunks and using simple language the task can be better understood and performed more efficiently.

An example of this in an eye examination would be: Please look at the letter chart while I cover one of your eyes with this (shows occluder), and tell me what the letters on the top line are.

Instead we could say:

• I’m going to cover one of your eyes – is that okay?
• Now look at the letters please
• Can you see these letters at the top (pointing)?
• What are the letters?

Another thing to be considered is that a person with learning disability may only act on or remember the last thing they hear. Thus, to a question ‘do you want coffee or tea?’ they will always respond ‘tea’; or ‘better first or second?’ will always elicit the response ‘second’; ‘would you prefer to use letters or pictures?’ ‘pictures’. Thus, to ensure we obtain the correct response and do not condemn a person to forever drinking tea or using a Kay picture test, we should use a forced choice system of obtaining the answer. Thus to the question: ‘Coffee or tea?’ we could ask: ‘Which one do you want?’, and show a packet of teabags or a jar of coffee and the same with letters or pictures.

When dealing with responses during subjective examination we necessarily need to show one lens then another, however, if the practitioner feels answers are always the second choice presented, then the lens options should be reversed and repeated or other clues such as facial expression may be used as in the pictures below.
 
 

Better first or second?

We must of course as far as possible be able to rely on retinoscopy or other objective tests where results from subjective examination may become misleading.

Pictures and sign language

People with learning disability often find the use of pictures or symbols to reinforce or replace the written word or language useful. Thus in many day centres and other care settings, labels and signs on doors often consist of a normal written sign, a simple drawing or ‘Makaton’ symbol and a photograph of the object or person. These symbolic representations reinforce speech and the written word in much the same way as the ‘golden arches’ are recognized long before children can read ‘McDonalds’ written underneath. In a similar and more traditional way pub signs were used to allow illiterate people to identify a particular tavern.

In our dealings with people with learning disability we can use similar pictorial reinforcement to enhance communication. Simple pictures from ‘Word Art’ can be used or other pictograms may be utilized. The main thing to remember is that these are to enhance the understanding of the message not to replace it. In the example below the visit to the optometrist is outlined.

These should be reinforced with simple sentences, for example in this case: We’re going to see the optometrist/optician/name of person who will look at your eyes. You will read/match (play a matching game with) the letters. The optometrist/name will then put some drops in your eyes and you will have a cup of tea while these work. The optometrist/name will then look in your eyes with a light. When this is all finished if you need them you can choose some new glasses.

Many people with learning disability have problems using or understanding speech and so use simple sign language called Makaton. This is based on British Sign Language but unlike that system which is used without speech and is a true language with its own syntax and grammar, Makaton is used to reinforce what is said and helps to clarify the spoken word. Whilst it may take considerable practice for anyone to learn signs for all eventualities it is probably very useful for optometrists who examine people with learning disability to know the basic signs for the symbols on Kay Pictures and Cardiff cards, as well as ‘brilliant’ or ‘well done’, ‘same’ or ‘similar’ and possibly to be able to sign their name.


               


Care must be taken when interpreting signs made by people if they have physical disabilities in addition to their learning disability as motor control may prevent them from signing ‘perfectly’ and this may cause confusion. The sign for train (used on Cardiff Cards) is a rotational movement of the arm with the palm flat toward the side of the body may easily be mistaken for the sign hungry which consists of rubbing the tummy with the palm of the hand. Thus we may think someone wishes to indicate ‘train’ when really they are telling their carer they are fed up, hungry and want their lunch!

Some patients use various different communication aids especially when they are unable to use verbal communication. These communication aids vary in complexity from simple picture or symbol cards which the individual will point at, to voice synthesizers which are operated via mechanical switches, suck/blow switches or linked to computers. Part of the optometrist’s role is to determine if difficulties in using these communication devices are due to visual problems. For example if someone has been easily able to use a communication device with 8 buttons but when moved to a more advanced unit with 16 or 32 buttons they struggle. This difficulty may be nothing to do with either their learning disability or motor control but purely due to the fact that symbols on the smaller buttons are not legible for the individual. In any written reports to carers, advice on type size should be given along with advice relating to contrast colour and size in photos or pictures for labelling these devices.

When communicating with people with learning disability the optometrist must allow time for the person to respond to questions. This is particularly true when dealing with people with more severe learning disability, and particularly those with multiple disabilities. The time taken to process the question and formulate a response will often be extended and with physical disability where there is poor motor control signed responses can also be delayed.

In summary

• Use pre-exam questionnaire
• Find out the individual’s preferred communication method
• Observe responses carefully – be aware of non-verbal clues
• Take care in phrasing questions – used forced choice?
• Make questions simple – avoid jargon
• Consider use of pictures to reinforce instructions
• Develop knowledge of simple Makaton signs
• Allow time for responses

 
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