I have low vision in addition to a few other medical conditions, so I have spent a lot of time visiting hospitals, doctor’s offices, outpatient testing facilities, and other medical environments. Since a lot of my conditions are unrelated to my vision loss, I get questions from medical staff on how they should help me navigate different environments or how to make different tasks easier, so I’ve put together this list of tips for supporting patients with low vision in medical environments. Items in this list can also be requested by patients and their caregivers as well.
Send copies of forms in advance
I have low vision and dysgraphia (poor handwriting), so it can be difficult for me to fill out registration forms and other medical forms while waiting for my appointment time. When possible, I appreciate having copies of forms in a physical or digital copy sent in advance that I can fill out before my appointment, or ask a family member to help me fill out at home. This is also helpful since I have a lot of allergies and this section can take a long time to fill out.
One tool that helps me quickly write down medical information and share information with staff and first responders is the Medical ID on my phone, which I share additional information about below.
- Filling Out Medical Forms With Low Vision
- How To Store Emergency Medical Information For Android and iOS
Offer to be a human guide
A human guide is a person who provides travel/navigational assistance to a blind person or a person with low vision by helping them get from one location to another. While a human guide is not a direct substitute for using a blindness cane or other mobility aid, there are situations where someone might rely solely on a human guide, or they will use a human guide in conjunction with a blindness cane. Anybody can learn and utilize the basic principles of being a human guide, and specific tips for medical professionals include:
- Sharing the name of the room number or location that they are traveling to, i.e room 7 or check-out window
- Providing specific directions, such as “we are turning left” instead of “we are turning here”
- When offering an arm, the general recommendation is that the guide positions their arm at a 90-degree angle from their body and bends their elbow at the same angle. I prefer to have someone walk on my left side because I use my blindness cane with my right hand
- When guiding someone to a bathroom or other private area, do not go inside with them- that is their own personal space. It’s okay to ask if the guide should wait outside for them
- Offer to have someone walk the patient out to the waiting room or to find their ride after their test or appointment is over
- How To Be An Effective Human Guide For People With Vision Loss
- How To Approach Someone with Low Vision Without Scaring Them
Distraction music during medical treatments
When I have to get procedures involving needles or that involve a lot of quiet time, I like to listen to music as a distraction so that I’m not thinking about what is going on. My neurologist will play music on their phone for us both to listen to during trigger point injections or other treatments, and has a tradition of having me play “guess the song” so that I can think about the lyrics or talk about a familiar artist. When getting blood drawn or other procedures that don’t involve my head or neck, I listen to music on an mp3 player with headphones, and also listened to music on headphones while getting one of my wisdom teeth removed.
When choosing distraction music, it helps to choose something familiar with an upbeat tempo that the listener can focus on, and avoiding lyrics about shots, needles, burning/stabbing feelings, or similar content that can increase anxiety. Most recently, I used the song “Holding Out For A Hero” by Bonnie Tyler, though sometimes my friends or family members will choose a song for me instead.
- Mainstream Technology and Low Vision: MP3 Players
- Audio and Nonvisual Entertainment Ideas For Blind and Low Vision
- How Amazon Alexa Can Help You Sleep
- How I Explain Chiari Malformation
Identifying staff with a visual description
When I’m in the emergency room, it can be difficult to identify who is entering and leaving the room, or knowing who is who when multiple staff are in the room. Something that really helped me was having the staff identify themselves with their name, job title, and a short visual description, as well as sharing where they were in the room.
Some examples of this include:
- “My name is Dr. Smith, I’m on your right side and I have dark brown hair.”
- “This is your nurse, Claudia, I’m here to fix your IV. I’m wearing green scrubs, and your other nurse, Skye, is wearing blue scrubs. I’ll let you know when I am leaving.”
- “There’s a few people in the room right now, so we’re all going to introduce ourselves so you can know what we sound like.”
- “This is Greg the PA, let me give you the latest update on your CT scan, and then Dr. Smith will talk to you more about next steps.”
- How To Create Helpful Visual Descriptions For Visually Impaired Audiences
- My Thoughts On Visual Descriptions With Low Vision
Talking through procedures and tests
Instead of having patients wondering what will happen next or relying on visual cues, it helps to have medical staff talk through procedures and tests so that patients can know what to expect, or don’t have to remember a long list of instructions. When I had to get a test that involved watching a timer that I couldn’t actually see, the technician would let me know how much time had passed and how much longer I had to go every few minutes. I also would receive specific instructions on how to move, i.e “move your head about six inches further up” instead of “move your head over here.”
When it comes to needles or blood draws, some patients may prefer to not know what is going on, while others would like to know how many vials they have left or when they will be receiving a needle.
Provide information in digital and accessible formats
When getting discharge papers or other handouts, it’s more helpful for me to receive a digital copy or a large print copy so that I can read it on my own- I personally have a preference for digital documents I can enlarge on my phone or tablet, as well as save in a folder. This is especially helpful when receiving instructions after appointments, tests, or surgeries. Most of the time, information is shared with me through MyChart or email.
- File Formats For Low Vision and Print Disabilities
- Why I Prefer My Schoolwork Digitally: Updated Edition
- Using Google Live Transcribe With Low Vision
Wait to remove glasses or mobility aids
Instead of having me remove glasses before lying down or positioning myself, I ask to keep my glasses on as long as possible since I am sensitive to light, and may have trouble finding items in a room without my blindness cane. For MRIs, this means waiting to remove glasses until I am on the table, or wearing my glasses into an operating room and having someone in the surgery room deliver them to recovery or to a family member. Sometimes, medical staff will also adjust or minimize additional lights so that I am not overwhelmed with bright lights.
When I am in the hospital, I typically sleep with my glasses on even though I don’t do that at home, because I never know when someone will walk in and want to talk to me, or if I will need to go somewhere
- How Tinted Glasses Help My Light Sensitivity
- How I Respond To Questions/Comments About My Glasses
- How I Respond To Questions/Comments About My Eyes
- Veronica’s Four Eyes: All About My Glasses For Low Vision
- Seven Places I Don’t Take My Blindness Cane
Share links to information about prescription medicine
When I am prescribed a new medication, it is helpful for me to view information about it on DailyMed, which provides a wealth of resources including a visual description of the medication, side effects, ingredients, and much more. This is more helpful than the handouts printed in small print at the pharmacy, and also gives me the opportunity to check that the medication does not contain an inactive ingredient that I am allergic to.
- Assistive Technology For Medication Labels
- What If I Get Appendicitis in College?
- DailyMed (nih.gov)
More tips on supporting patients with low vision in medical environments
- I highly recommend that medical professionals familiarize themselves with assistive technology and other tools used by people with disabilities- learn more about assistive technology for low vision in A to Z of Assistive Technology For Low Vision
- Even when the hospital says that I am not allowed to have someone with me, my parents or another friend/family member can typically accompany me during tests if I mention I am legally blind and need additional assistance- this was especially helpful when I had to be taken to the ER in an ambulance
- People who have been recently diagnosed with low vision or vision loss may have different needs than people who have lived with vision loss for longer periods of time- read more in my paper Addressing The Trauma Of Sight Loss
- If the patient is traveling with a family member or other care attendant, ensure that staff are speaking directly to the patient, unless the family member/care attendant indicates otherwise. It’s frustrating when people ask my mom questions that I can answer myself, and is an important part of Learning to Self-Advocate