FOCUS ON LOW VISION
Why Didn't They Tell Me?
by Stephanie K. De Long

That's what many low vision patients say about services and devices. "I didn't know there was help." "I didn't know the doctor was wrong when he told me nothing more could be done." "I didn't know I would ever see my grandchildren's faces again."

To find out more about patients and their journeys to finding help, a mid-sized provider of low vision services in the Western U.S. recently surveyed 60 individuals who had indicated prior problems finding services and devices that could help.

Here are the answers of those low vision patients to questions about getting help.

Next month, we'll look in more detail at their current care and improved functioning.

1. LACK OF AWARENESS: How did you learn about our low vision services?

a.    Family or neighbor...33%
b.    Eyecare professional...30%
c.    Family physician...20%
d.    Phone book...8%
e.    Internet...7%
f.    No response...2%

2. PROVIDERS WHO DIDN'T HELP: How many, if any, other vision care providers did you see about your loss of vision before coming to us?

a.    Average...3.5
b.    Most...7
c.    Most frequent response...3

3. PAST CARE PROVIDERS: Which statement best describes the care and recommendations you received at those locations?

a.   Told me nothing could be done...47%
b.   Referred me to social services...33%
c.   Sold me a device without training...15%
d.   No response...4%

4. EMOTIONAL STATE: Which best describes your feelings before you found help?

a.    Helplessness...50%
b.    Depression...31%
c.    Anger...17%
d.    No response...2%

5. FRUSTRATION LEVEL: What was your biggest frustration?

a.   Lack of information...40%
b.    Lack of services...20%
c.    Being told I just had to deal with being blind...20%
d.    Waiting to see doctor...10%
e.    Feeling alone...8%
f.    No response...2%

6. DEVICES: What kinds of devices had you used in the past?

a.    "Drugstore" magnifier...3%
b.    Prescribed magnifier...25%
c.    CCTV...10%
d.    Bifocals...8%
e.    No response...24%

7. MULTIPLE DEVICES: How many devices were you using before coming here:

a.    One...42%
b.    Two or more...8%
c.    None...50%

8. PATIENT GOALS: When you came to our practice, what did you MOST want to accomplish in terms of regaining visual independence?

a.    Read...45%
b.    Watch TV...38%
c.    Recognize faces...8%
d.    Mobility...7%
e.    No response...2%

Of all the responses, the most surprising are that nearly a quarter of the patients weren't able to answer the question about past device use, while half said they had never used anything at all.

dear doctor...

The patients surveyed were asked to write in what they would like the medical and social services communities to know about serving their needs. Here are a few of their comments:

• TALK. "I'm not dumb. I just can't see. I had my own company for 30 years. Nobody treated me as stupid until I got this [macular degeneration]."

• HELP. "Wish I could sue the docs I saw before. They told me no one could help me. So how is it I can watch nightly news again?"

• PATIENCE. "I had trouble learning to use that big-letter reading TV [CCTV]. It takes a lot of tries and time to find the lines and move stuff under it. If my sister hadn't nagged me to get training here at my apartment, I'd have given it up. People like me don't like asking for help. Some days, that hurts more than not being able to see things."

• SUPPORT. "My kids really tried to understand. But I'd get mad. Then they'd get mad. When my son-in-law told me about the [support] group, I said no. But I went, mostly to shut them up. I'm glad because talking to other people with problems like me has been great."

• INSURANCE. "My income is real limited. When I read how people in other countries get their magnifiers and things paid for, that teed me off. We're such a great country, how come we don't have insurance for these things [devices]?"

• GOALS. "I've been coming [to this office] for three years. Almost every time, we work on something new—doing something I want to do, but can't since my eyes went bad. Now I can cook again, read on the big screen, and see the cinema. I wish I could do everything like before, but this is a lot better than three years ago when I mostly just sat."