Low vision patients’ perspectives on why eyecare professionals need to ‘See Beyond the Eyes’
Daniel Williams, Founder of Visualise Training and Consultancy, asked patients what they think eyecare professionals could do better for patients with sight loss to enhance their experience. Daniel has collated all the replies below to give the true voice of low vision patients sharing their thoughts, experiences and feelings.
Daniel said “It’s about time we listened to the voice of low vision patients to plan for the future and make positive changes as it’s a distressing time for many having sight loss and there are several simple adjustments that can be made to enhance the patient experience to reduce their stress and anxiety. There are many well-meaning people advising services on what low vision patients need, rather than low vision patients advising services on what they actually need.
Below are comments from a range of patients living with low vision, taken from various Facebook groups
“Turn on the lights when going into the testing area and allow patients with RP to adjust to the lighting before testing, or guide patients into their seats. Receptionists should talk to the patient rather than to their partner or other person with them. Ask if they need assistance when filling out a form. Don’t talk to us in a condescending voice as if we are children”.
“When the retinal specialist tells you that your child has retinitis pigmentosa, glaucoma, and cataracts and is so clueless about it when questions follow and just sums up the appointment with “go look it up on the internet.” When the staff won’t look at you because they have no answers either. I have said for years I would like to train their staff. If you don’t know, find out. Reassure your confused patients that you will find resources to help them. Have some empathy. Some of those things cannot be taught I fear…”.
“I see lots of suggestions about increasing the lighting; however, the light hurts my eyes and I prefer it dim. We’re all different, so perhaps instead of having it dim or bright, they should be asking us what we need or prefer”.
“Slow down during the exam. I can’t even put a face with 2 of my doctors because they are in and out so fast. We pay a lot for nothing this is the least they can do”.
“The best training would be “Don’t assume anything, ask the patient!”
And listen to what the patient says without the snarky looks and condescending tone. Continuous and or repeat training for staff and doctors, should be mandatory and at least yearly”.
“My doctor actually listened to me last time and we did the FOV test without the dilating drops, so much better and passed the test”.
“It’s a blessing when the offices have dimmer switches or alternate lighting options. Photosensitivity is very important. Reading the eye chart with dimmed light is not same as reading it with all fluorescent lights on. Lighting options make a huge difference”.
Find a low vision specialist
“Hello All, I’d recommend starting with an Ophthalmologist who specialises in low vision. My two daughters with albinism are grown now, and they make sure to still see one. You can’t go wrong, plus it’ll save you a lot and of heartache. Nothing worse than hearing an optometrist say to your child, “your eyes are jumping, stop moving them”! 😩
1. office space: high contrast, comfy lighting, change of texture on the floor to separate large spaces and to help find receptionist or exit door
2. Blind sensitivity training
3. Post diagnosis education: Provide a list of resources and support mechanisms for low vision centres, charities for the blind, local and social media support groups and social services
“Doctors have a moral obligation to educate their patients not only with respect to their diagnosis and treatment options, but services and mental health should also be included in such an obligation”.
“The peripheral vision tester they use isn’t sensitive enough. Despite telling them I only had 6 degrees in each eye they still put me through the test after telling me theirs only went down to 25 degrees. They then got confused and worried that I didn’t see anything”.
“Also, the new sight tests that are done on a screen, as they are back lit with black writing on a white background, I’ve got no chance of seeing what I would have been able to see on the old printed boards”.
“My experience with opticians varies, some have little understanding, and some have a great deal. It was an optician who first spotted my RP at a normal sight test and referred me to the hospital before I even knew I had any vision loss. That said, my worst experience was not at an opticians’ but at an actual eye doctor’s specialist clinic. I was called in to the room, which was in darkness. The doctor was apparently sat inside but I couldn’t see a thing so stayed in the corridor. My wife asked the doctor if she could turn on the light, just until I found the seat. The doctor refused and without even bothering to stand up or help replied that as my wife was with me, she could guide me in”.
“Having attended opticians with my children then seeing them attend as adults there has been little awareness of RP and how it affects individuals. My son has been asked to look in a mirror by an optician to see his ‘eyes glow’ from drops put in, needless to say he couldn’t make it across the dark room! I know questions need to be asked but my daughter is SSI and is always asked if she drives. This can be quite sensitive to people who have lost their licence due to vision loss.
Advice for Dispensers
After having the sight test, the dispensers could also be more helpful with guidance on what glasses suit face shape etc. My daughter takes a while to scan all the choices of frames. It’s also hard to know which frames will suit a higher prescription as lenses need altering and thinning. We get very little guidance and they generally stand back, and she just gets increasingly frustrated”. Overall, I hate going to the opticians with my kids, even now they are adults!”
“Did the peripheral vision test once and the optician assistant thought the equipment was bust! Also, the one I used to go to had only one downstairs optician’s office and it was a lottery if I got that – the rest were upstairs, not a good idea …”
“The optician thought the peripheral vision machine was broken and went to get a manager. The manager came over and tested it, then she asked me if I had any problems with night vision. I told her yes and she immediately wrote me a letter to take to the hospital eye clinic. I only went to get prescription for swimming goggles and came back with RP” 😂
“I was accused of treating the eye test as a game because she didn’t know I had RP”.
“Like many I have found opticians and hospital eye clinics to be very unhelpful. Even some of the well-known eye clinics make you walk around dark rooms cluttered with many different equipment stations and staff are like statues. I hate doing field of vision tests in with other patients as I often get very emotional as this is the only way I can track the decline of my vision, when you’re only clicking the button a few times and you know it’s worse than before the last thing I want is an audience. Nurses and technicians should read the notes and be more sympathetic and helpful. I think because they know they can’t fix it they make me feel like a number and want me out ASAP. I’ve never been offered help or advice or told that I would qualify for blue badge or not or how to learn brail etc”.
“I think if I got hit on the head and my sight was tested, they’d drown me in advice I need a social worker/help to work etc but because I’ve lived with something someone else must have educated me but obviously no one has”.
“For years I’ve had field tests and not one optician questioned it. They thought I couldn’t be bothered to press the button. I was finally sent for testing when I had 2 very near misses when driving”.
“I have horizontal nystagmus and need bifocals with a large viewing area for reading. An optician told me these executive bifocal lenses were no longer available – 12 years ago! – and conned me into getting normal bifocals which were a disaster. Let them know of the purpose of a full line bifocal”.
“Just to know about the patient’s condition… mine is caused by coloboma and the optician tried to say it was because I was premature when I wasn’t, and the damage was done in the first trimester anyway so wouldn’t have mattered if I was. Also, regarding help choosing – I get that some might want to help but I actually find the staff quite pushy when you go out from the opticians room to pick the frames – so the staff need to know when to back off as well as when to help. I’ve ended up going back the next day to choose the frames, because then you don’t have an assigned person following you round the shop”.
Once when I was at an eye hospital, when I was sat on certain machine my daughter was told to “keep her eyes still” I looked at the guy and said, “your joking right, she has nystagmus”?
“Looking at the eye chart causes eye fatigue rapidly. So many breaks between reading the lines is very helpful”
“That full correction isn’t necessarily the best. 0.25 under correction can prevent an increase in nystagmus from the full correction ‘forcing’ fixation”. (That’s what my consultant has always advised, and what I follow.)
“The eye puff test and eye drops hurt. I feel my eyes move and makes me want to vomit”.
“Speaking on behalf of my 8-year-old son, don’t rush through. He needs breaks, his eyes get tired quickly and an eye test for him is more mentally exhausting than it is for a person with ‘normal’ eyes. And knowing what nystagmus is in the first place is always a good start!”
“Not to make your patients feel stupid or make them feel like they don’t believe them or make them feel like they are crazy and will not listen. (I told my eye doc for 2 years I was losing my peripheral, when he finally listened to me, he said, “why didn’t you tell me?”….
“I agree, they do act like your lying when you say you don’t see something, or they are impatient”.
“It takes a while for my eyes to adjust so when you are flipping lenses back and forth quickly and asking which is better, 1 or 2, slow down and let my eyes have a moment without getting impatient”
“Make sure your technicians know the patient’s background. I was so upset when our son, a grown man, told us the tech doing the field of vision test told him she hopes his second eye was better than the first as he surely did not see much the first time around”. I mentioned that he needed to share that response to the doctor as it was totally inappropriate. He knew he would not see much.
“I would suggest that you emphasize that clinicians need to take time and not rush. Sometimes it takes longer to focus to see and give an accurate answer. I, for example have to move my eye around a lot to see letters on a chart due to macular damage. Also, clinicians should explain what they are doing when moving equipment around and to be clear in their instructions to the VI patient.
Although some individuals may have a hearing impairment many do not so don’t make the assumption that we need to spoke to loudly. Finally, it needs to be made clear that many of us know more about our VI than they do and they need to listen to everything we say. Often clinicians tend to only absorb the information provided that is consistent with their hypotheses and ignores information provided that doesn’t fit. That is extremely annoying and can also lead to inaccurate diagnoses or treatments”.
“What I have found to be the most helpful is finding an eye doctor who is trained in low vision”.
“Better trained staff on visual impairment. Asking the patient instead of assuming anything. The “look over there” statement drives me crazy, just where IS over there! Please use right, left, up, down or a reference to the numbers on a clock, i.e. look right about 2 o’clock. More training for optometrist to know and understand the different kinds of eye diseases. I went to get glasses and over the years and have encountered several optometrists that have no idea what RP is or even how a VI person sees. I realise that optometrists are not doctors but I have seen a couple of ophthalmologists that have been lacking in knowledge also. Very frustrating to have to educate a doctor who supposedly went to school for years and should have at least a cursory knowledge of RP”.
“Here’s something that might help and I don’t know if anybody else has a different thought on this but I know I’ve been to doctors’ appointments even optometrist and ophthalmologist and they always give you a form to fill out, how am I supposed to fill out a form if I’m blind? So, if there’s a way to fix that that would be great”.
“Tell them not to shine bright lights on the eyes of patients suffering from light sensitivity”.
“I think giving you a designated optometrist for your visits, so you don’t have to explain your condition every time”.
“I find if they can’t enlarge the letters I can’t see enough to see if there’s any difference with the lenses they try, many times they cannot enlarge the letters”.
“Telling you when they are about to do the pressure test. I yelled at a doctor for not doing this, this was after he lost his temper with me because I kept jumping back when it touched my eye”.
“I am a QTVI and find they don’t tend to know much about day to day issues for students or to tell parents to get in touch with us if their child isn’t having support in school”.
“Tell them not to make ‘clue’ noises when testing children! A friend’s child was shown a picture of a train (she couldn’t see it- she’s blind), and the optician made a ‘choo-choo’ noise and then looked like it was a miracle when the child said ‘train’”.
“Here’s a tip, after reading notes, or apparently saying that they’ve read notes, maybe that they should refrain from sitting totally blind people in a room and telling them to read letters on a chart, then getting frustrated and shouty when the blind person fails to read the aforementioned letters”.
“Don’t ask us to do all of the tests with the bright lights first and then ask us to do the reading chart”.
“I had a newbie that did it in this order and honestly, I don’t think he fully understood the impact doing it that way had on my eyes”.
This just demonstrates why it is so important for patient feedback after all consultations, so please listen and give low-vision patients a voice in the optical sector, especially when we are informed that by 2050 there will be around 4 million people living with sight loss.
The “Seeing Beyond the Eyes” project is addressing all these concerns and informing optical professionals of the correct procedures when seeing patients living with sight loss so we welcome your comments.
For more information on the Seeing Beyond the Eyes project findings, please click on the link below