VISUAL AWARENESS TRAINING

1. VISUALAWARENESSTRAINING Alex Johnston E-Learning Prototype version 0.1

2. Visual Awareness Training There are approximately 52,000 people living in Northern Ireland who have serious sight loss. Visual awareness training will help you better understand their needs and improve the quality of service you provide by helping you feel more at ease when working with service users or colleagues who have sight loss. What’s Included in the Training:

3. Quiz 1. How many people in Northern Ireland have serious sight loss? (a) 68,000 (b) 52,000 (c) 32,000 2. A totally Blind person can hear better than a sighted person True or False? 3. What percentage of blind and partially sighted people read Braille? (a) 5% (b) 35% (c) 65% 4. What % of people with severe sight loss actually see ‘nothing’ i.e. live in darkness? (a) 48% (b) 15% (c) 4% 5. What proportion of blind and partially sighted people are over 65? (a) 23% (b) 62% (c) 75%

4. 6. Watching TV is the most common pastime for Blind people True or False? 7. How many blind people in NI have a guide dog? (a) 1700 (b) 850 (c) 100 8. What is the DDA? (a) Disability Discrimination Act (b) Dogs and Disability Association (c) Department for Disability Access 9. What percentage of people with sight loss of employable age are working? (a) 85% (b) 45% (c) 25% 10. What percentage of books are made available in alternative formats? (a) 100% (b) 50% (c) 5%

5. Answers to Quiz Question 1 Answer: 52,000 Question 2 Answer: False People who are blind may make better use of their hearing as they are relying on it to help with orientation e.g. Listening to traffic to help identify which direction they need to go. However, there is no magical enhancement of your hearing! Also bear in mind (as we shall see later) that the majority of people with sight loss are over retirement age and are as likely as anyone else to develop age related hearing loss.

6. Question 3 Answer: 5% 5% of registered blind and partially sighted people can read Braille. However, the proportion of blind people of working age who can read Braille is higher. Braille is an invaluable form of literacy for those who have had an opportunity to learn it. There are many reasons why not everyone learns it. Most people lose their sight in later life, and may not have the opportunity or motivation to learn also Braille is often perceived as difficult to learn. Access technology is very popular, especially among younger people. Many people feel it is an adequate alternative. One of the most common causes of sight loss among people of working age is diabetic-related eye conditions. As diabetes effects nerve endings, many people with this condition find that their sense of touch is often impaired making it difficult to read Braille

7. Question 4 Answer: 5% 5% of registered blind and partially sighted people have no light perception. Many people with severe sight loss have what is called useful vision they are still able to distinguish colours or have perception of light which enables them to orientate themselves in a room. Question 5 Answer: Over 75% Over 75% of registered blind and partially sighted people are aged over 65 meaning, the majority of people have not grown up with the condition and are adapting to sight loss in later life.

8. Question 6 Answer: True Blind and partially sighted people are as likely as anyone else to want to watch soaps, documentaries or dramas. Audio description (AD) is now making many television programmes more accessible. Like a narrator telling a story AD is an additional commentary describing body language, expressions and movements. Through digital TV (satellite, cable, or Freeview) it is possible to access audio description on many programmes such as Coronation Street, Emmerdale and Eastenders. Audio description is also available in several cinemas across Northern Ireland. The person who is blind or partially sighted is given a set of headphones so they can listen to a description of the visual aspects of the film. Question 7 Answer: 90 to 100 There are 90 to 100 working guide dogs in Northern Ireland. See the helpful hints section for more details on guide dogs.

9. Question 8 Answer: Disability Discrimination Act 1995 Briefly, disabled people have equal rights of access to places, services, information and employment and to participate in society fully. Reasonable adjustments should be made by service providers etc to enable people with disabilities to participate fully. This means that if someone asks for information in an audio format, it should be made available. Question 9 Answer: 25% In NI 25% of registered blind and partially sighted people of working age are in paid employment. This is slightly lower than the estimated 33% in the UK as a whole. In many cases this is because employers are unsure of the needs of a blind or partially sighted person e.g. access to current technology, etc. A government scheme called Access to Work is available to help meet the costs of equipment needed for any employee with a sight problem or other disability. The charity, Royal National Institute of Blind People (RNIB) can also give advice to employers.

10. Question 10 Answer: 5% Only 5% of printed books ever become available in alternative formats such as large print, audio or Braille, whether commercially or by charities. This includes textbooks, manuals and fiction.

11. Some of the MostCommon Eye Conditions Age Related Macular Disease Age-related macular degeneration (ARMD) is the most common cause of vision loss in those aged over 50. It causes a gradual loss of central (but not peripheral/side) vision. Central vision is needed for detailed work and for activities such as reading and driving. The disease does not lead to complete blindness but visual loss can occur within months, or over many years, depending on the type and severity of ARMD.

12. Some of the MostCommon Eye Conditions Age Related Macular Disease There are two main types of ARMD, ‘wet’ and ‘dry’. There is currently no cure for dry ARMD but wet ARMD can be treated with laser therapy or medication which is injected into the eye. Treatment helps slow down the progression of the disease and in some cases has also been shown to restore some of the sight lost to wet ARMD. Smokers are four times as likely to develop ARMD. Risk factors include smoking, diet and genetics.

13. Glaucoma Glaucoma is the name given to a group of conditions in which the optic nerve is damaged due to changes in eye pressure. The optic nerve damage causes patchy loss of vision that varies in severity from patient to patient. Most patients with glaucoma are not aware of problems with their vision. This is because the central vision (for reading and recognising people) is only affected when glaucoma has advanced to a late stage.

14. Glaucoma Even when central vision is still good, glaucoma may affect the vision needed for driving and mobility (for instance, seeing steps). Blindness from glaucoma is rare. For most glaucoma patients the main effect of the condition is the inconvenience of taking eye drops.

15. Diabetic Retinopathy This is the most common cause of sight loss among people of working age. Retinopathy (damage to the retina at the back of the eye) is a common complication of diabetes. Initial symptoms that may occur include: blurred vision; seeing floaters and flashes; or sudden vision loss. If left untreated, diabetic retinopathy can cause some loss of vision, or blindness in severe cases. Good control of blood glucose and blood pressure slows the progression of retinopathy. Treatment with laser therapy before the condition progresses can often prevent loss of vision.

16. Cataracts A cataract is when the lens of an eye becomes cloudy and affects vision. Cataracts most commonly occur in older people and develop gradually. Cataracts can usually be treated with a routine day procedure where the cloudy lens is removed and is replaced with an artificial plastic lens. In developing countries where treatment is not available cataracts are a major cause of blindness.

17. Hemianopia Hemianopia is a blindness or reduction in vision in one half of the visual field. This damage can result from acquired brain injuries caused by stroke, tumour or trauma. 62% - 70% of people who have had a stroke will Experience some kind of visual loss. If the stroke affects the left side of the brain, the vision in the right side of the eye is affected and vice versa. Other visual problems that may occur as a result of stroke include eye muscle and nerve problems resulting in double vision and/or sensitivity to light. There are various techniques that can be used to try to help or compensate for the various visual problems.

18. Communicating Effectively with People who are Blind or Vision Impaired • Identify yourself - don’t assume the person will recognise you by voice. • Ask what level of vision the person has – visual loss affects individuals in different ways. • Offer information in preferred format – e.g., large print, minimum font size 16, Braille or audio, if this is not possible offer to read the document e.g. consent forms, menus etc. • Speak naturally and clearly - loss of vision does not mean loss of hearing. • Use body language - this will affect the tone of your voice and give extra information to the person who is visually impaired. • Use everyday language - it is not necessary to avoid words like “see” and “look” or to avoid talking about daily activities such as watching TV or videos. • Use the person’s name – e.g., when introducing yourself or when addressing them in a group situation. • Speak to the person directly - never channel conversation through a third person e.g., “Does she take sugar in her tea?”

19. Communicating Effectively with People who are Blind or Vision Impaired • Be courteous - introduce the other people present in a group situation • Sign off - never leave a conversation without saying so. • Use accurate and specific language - e.g., when giving directions say, “the door is on your left”, rather than, “the door is over there”. • Always tell the person what you are going to do – e.g., taking blood, clear their dishes away etc. • Always ensure that the person’s modesty is protected - e.g., if the person is wearing an examination gown and needs to move through a public area. • Explain where you place things – e.g., “I’ve placed your cup of tea on the table directly in front of you.” At mealtimes use the clock face method to describe what is on the plate i.e. “potatoes at 3 o’clock, meat at 6 o’clock.” • Encourage the patient to use their glasses or other magnification aids

20. Communicating Effectively with People who are Blind or Vision Impaired • Explain the layout of the room – e.g., location of the patient’s locker, call button, height of examination tables, the patient may place their hand on the table to gage the dimensions. Doors should be fully closed or open. not in between. • Be aware that changes in lighting levels can greatly affect a persons level of vision – may also cause difficulties with mobility. • Avoid situations where there is competing noise – e.g., corridors, reception area, if necessary, guide the person to a quieter area. • Do not expect eye contact - certain eye conditions render it difficult or impossible for the person to maintain eye contact. • Always check if help is needed – e.g., the person may need guided to another department or changing area, ensure they can return to their original location if required. • Do not leave the person standing in the middle of a room – ensure they have a point of reference e.g., a pillar, wall, chair, etc

21. Written Information Clear Print • Document text size should be 12-14 pt, preferably 14 pt. • The font you choose should be clear, avoiding anything stylised. • All body text should be left aligned. • Use bold sparingly, only highlight a few words rather than a paragraph. • Keep the text layout clear, simple and consistent. • Don’t use blocks of capitalised letters, and try not to use any italics or underlining. • Text shouldn’t be overlaid on images. • The substrate or coatings should not be glossy or reflective. • Ensure the paper is thick enough to prevent show through. • The contrast between the text and background is as high as possible. • All text should be the same orientation on the page. • Space between columns of text is large enough to be distinct. • Any information conveyed in colour or through images is also described.

22. Large Print • There is no official standard for what constitutes large print but it is usually 16 or 18 point in size Audio • More commonly CD rather than cassette. Braille • The most widely used tactile reading format in the world (RNIB 2012)

23. Five Helpful Hints on Approaching a Guide Dog Owner Out Working With Their Dog 1. Never distract a guide dog in harness. The dog will be concentrating on guiding its owner. If distracted, it might put itself and its owner in danger. Ignore the guide dog completely at all times, both when it is in harness or on a lead, and even avoid eye contact. 2. A guide dog owner will indicate the need for sighted guide assistance when the dog is in harness by allowing the harness-handle to lie on the dog’s back, whilst maintaining hold of the lead. 3. A guide dog usually walks on the left of the owner. Allow the owner to take your left arm if they require sighted guide assistance, so the guide dog is on the opposite side to you. 4. Never tell a guide dog what to do. It’s up to the guide dog owner to give the dog instructions and directions. 5. Never feed a guide dog. They have a perfectly balanced diet and should only be fed by the guide dog owner (Guide dogs, 2012)

24. Key Points for the Basic Guiding Position • If the person is not familiar with the surroundings, ask politely if they would like to be guided. However, not all blind and partially sighted people need help in getting around so don’t be offended if your offer is not accepted. • Offer your arm for the visually impaired person to grip just above the elbow. Alternatively, the person may prefer to grip your shoulder. Try and keep your guiding arm still and relaxed. • Watch out for hazards at head height, especially if the person is taller than you. It is easy to walk them into a overhanging sign or shop canopy! • Explain any loud noises which may alarm them, (eg cars backfiring, bin lorries rumbling) and explain changes in ground surface (carpet to tiles). • Walk slightly in front of the person, making sure that the pace is not too fast or too slow.

25. Key Points for the Basic Guiding Position • If steps or stairs are involved in the journey then please make the person you are guiding aware of this by stating if they are to go up or down. Always make the person aware when you are approaching, and have reached ground level. • When going through a door let the person being guided know if it is opening towards or away from them, they should always be on the hinge side. DO NOT push the person through the door. If possible avoid revolving doors and let the person know when they are approaching automatic doors. • To help the blind or partially sighted person find a seat place his or her hand on the back of the chair, describe what the chair is like e.g. does it have arm rests, this will allow the person to find their own way to the seat. DO NOT back the person into the seat.

26. The Disability Discrimination Act Under the DDA service providers must also provide reasonable adjustments for disabled people to enable them to access their services. There are four main types of adjustments: 1. Changing policies, practices and procedures For example people might need to make appointments in different ways: by phone, email, text or in person. Another example is regarding who can accompany patients into clinical areas. A disabled person who is visiting their GP may wish to be accompanied by a friend, family member or advocate, or appropriate communication support. 2. Providing auxiliary aids and services For example, providing discreet assistance to people with reading and writing difficulties. Or the provision of human aids to communication, such as communicator guides or interpreters for BSL.

27. The Disability Discrimination Act 3. Providing an alternative service where the usual service location is not accessible For example, if a doctor’s clinic is located in an inaccessible part of the hospital the doctor could hold the appointment for a disabled person in a more accessible part of the hospital. 4. To remove, amend or avoid physical barriers to the surgery, hospital or clinic For example, by removing a set of steps and replacing these with a ‘level entrance’, or, by amending the entrance by installing a ramp and steps, or, by avoiding the barrier by using another accessible entrance.

28. The Patient’s Journey Please read the following multiple choice scenarios and decide which provides the best service for the patient. Scenario 1 Mrs McNeill is a sixty three year old woman living alone after the death of her husband three years ago. She has two sons but both live in mainland UK. Mrs McNeill was diagnosed with age related macular disease six months ago so she must attend the macular clinic in Belfast every eight to twelve weeks for treatment. She also suffers from rheumatoid arthritis and has had a recent flare up, her GP has made a referral to the local hospital day procedure unit for a review. She has received a letter which she thinks is from the hospital but is unable to read it herself, she must wait until her home care worker arrives to find out the date of her appointment.

29. The Patient’s Journey Assuming Mrs McNeill’s sight loss has now been flagged up to the hospital what could they put in place to ensure she has access to her own correspondence without requiring the assistance of another person? (1) She receives a reminder telephone call as well as a standard letter. (2) She receives a letter in large print. (3) The hospital confirm which method of contact Mrs McNeill would prefer and then act accordingly

30. Scenario 2 Mrs McNeill arrives at the hospital for her appointment but is not sure where the Day Procedure Unit is. She asks a member of staff for directions letting them know she has poor vision. What assistance does Mrs McNeill require? (1) A detailed explanation of the hospital layout as well as a map with the day procedure unit highlighted. (2) Staff member asks if she would like to be accompanied to the Day Procedure Unit, offers his/her arm and guides her to the unit. (3) Staff member points in the direction of the unit and says ‘it’s just over there’ and then walks off.

31. Scenario 3 Mrs McNeill arrives at the reception desk, the receptionist is polite and friendly and asks her to take a seat and wait to be called. What else might the receptionist do to assist Mrs McNeill? (1) Having established that assistance is required the receptionist asks a colleague to take Mrs McNeill over to a seat. (2) Having established that assistance is required the receptionist guides Mrs McNeill to her seat and agrees that either she or a colleague will guide her into the consultant’s room when required. (3) Nothing, it is not her responsibility to do anything else, she has performed her job in a polite and friendly manner.

32. Scenario 4 After waiting twenty minutes in the very busy reception area Mrs McNeill is called by a nurse who pops her head quickly round a door and then disappears back into the room leaving Mrs McNeill to find her own way into the room. Unfortunately, the helpful receptionist is now on her break. Could Mrs McNeill’s experience be improved? (1) No, the consultant is running behind and the nurse must get the patients through as quickly as possible. (2) Yes, having been told that Mrs McNeill required assistance the nurse could have guided Mrs McNeill into the surgery explaining both what to expect when she arrived and the layout of the room. (3) Yes, as standard practice the nurse could have guided Mrs McNeill into the surgery explaining both what to expect when she arrived and the layout of the room. Following the consultation she could also call a porter who would ensure Mrs McNeill finds the hospital exit.

33. Scenario 5 During the consultation with the doctor Mrs McNeill is asked to sign a consent form for treatment that will be scheduled in three weeks time. She is unable to read the document but not wanting to waste anyone’s time she quickly scribbles her name at the bottom of the page. How could this experience be improved? (1) The consultant or nurse could read the entire form to Mrs McNeill giving her time to consider all the options. (2) As standard practice consent forms could be in alternative formats e.g. Braille, audio and large print. (3) The consent form could be transcribed into Mrs McNeill’s preferred format and posted to her home address.

34. Scenario 6 Mrs McNeill is admitted for knee surgery. She and her son (who is staying with her for a few weeks) are taken to the allocated bed and shown the locker and how to operate the call-button, TV and radio. Mrs McNeill’s son leaves once she is settled. Mrs McNeill needs to go to the bathroom and tries to find it herself, unsuccessfully. A member of staff sees her and before she can explain Mrs McNeill is ushered back to her bed. As all the staff are busy she is told she must wait to be accompanied to the bathroom or use a bed pan. Mrs McNeill does not want to use a bed pan but rather than make a fuss she agrees to do so. What could staff do to improve this experience? (1) For Health and Safety reasons the patient must always be accompanied to the toilet therefore, on this occasion Mrs McNeill must accept the situation. (2) On arrival, Mrs McNeill is shown around the ward by a nurse, she is guided to the bathroom and both she and her son have the opportunity to practice the route several times to ensure she is independent. (3) On arrival, Mrs McNeill is told where the bathroom is.

35. Scenario 7 On her return from x-ray Mrs McNeill finds a card has been placed on her bedside table, the patient next to her explains that it is a menu card from which she must select what she wants to eat the following day, together they complete the card. What further assistance does Mrs McNeill require? (1) Either nursing or health care staff read the menu card to Mrs McNeill who then indicates her choices. (2) As standard practice menu cards could be made available in alternative formats e.g. Braille, audio and large print. (3) This is a great opportunity to meet other patients and reduces the burden on hospital staff.

36. Scenario 8 Knowing that Mrs McNeill would be returning to the ward shortly staff have left her lunch sitting on the over bed table. Not realising that this was the case Mrs McNeill moves the table and in doing so spills the soup over her bed. She is really embarrassed and feels awful that staff will have to change her bed linen. How could this situation be avoided? (1) A member of staff notices Mrs McNeill returning to the ward and shouts out that her lunch is on the over bed table. (2) Mrs McNeill’s lunch could have been kept elsewhere until she arrived back into the ward after which staff could have brought it to her, ensuring she was sitting comfortably and knew exactly where the food had been placed and what was on her plate e.g. use the clock face method to describe what is on the plate i.e. “potatoes at 3 o’clock, meat at 6 o’clock.” (3) Knowing that Mrs McNeill has significant sight loss the hospital have organised that a volunteer is available to feed her to ensure she does not miss out at mealtimes.

37. Answers • Scenario 1 - 3 • Scenario 2 - 2 • Scenario 3 - 2 • Scenario 4 - 3 • Scenario 5 - 3 • Scenario 6 - 2 • Scenario 7 - 2 • Scenario 8 - 2

38. We hope you have found this useful and now feel more confident working with service users or colleagues who have sight loss.