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HomemipatientThe Only Thing Worse Than Being Blind Is…

The Only Thing Worse Than Being Blind Is…

Low vision experts have a clear view on what we should be doing better to manage patients with low vision.

Helen Keller is attributed as saying, ‘The only thing worse than being blind is having sight but no vision.’
Let me change Helen’s saying to make a point: ‘The only thing worse than being blind, is having sight, but being told you have no vision’.

We deal routinely with conditions that cause compromised vision, including but not limited to, macular degeneration, cataracts, strokes, brain injuries and glaucoma. Our role is to provide as much functional vision as possible for these patients… but do we?

How often do we refer patients for a low vision assessment? Are we referring routinely for low vision services? Are we referring as often as we should? By omission, are we depriving our patients of functional vision?

I asked these very questions of low vision experts Julie Zizic, a Guide Dogs NSW/ACT representative, and Andrew Maver, a senior consultant low vision optometrist for the Lions Low Vision Clinic at Royal Hobart Hospital. Their responses were revealing: we refer nowhere near as often as we should.

So, with that said, the obvious questions are: Why aren’t we referring on? What are the barriers, and how can we do better?

Julie told me that one of the biggest barriers is emotional – patients diagnosed with vision impairment express grief and worry about how they will be able to continue doing the things they love to do. Because of this, many see referral to a low vision service as futile.

I’d back that up with experience. In practice I have heard, “What good would a referral do? They can’t bring back my eyesight because of my macular degeneration”.

This could be countered with, “A low vision specialist can help you maximise the use of your remaining vision and modify the way you do things so that you can continue to function as you did before”. We might also provide some examples of low vision aids and services that would be incredibly beneficial for our patients.

Andrew Maver agrees that we could do better and says there is an opportunity for both optometrists and ophthalmologists to ensure patients are referred to a low vision expert.

“Some optometrists and ophthalmologists refer to low vision services very well and others never refer. As an optometrist, you should not assume the ophthalmologist you refer your patient to will refer on for appropriate low vision services. The ophthalmologist is primarily concerned with the medical/surgical treatments of eye conditions and often might assume that you will handle functional visual issues.

“The worst thing that either an optometrist or ophthalmologist can do is say, ‘There is nothing more that can be done for your eyes’. We can achieve far better results if we focus on saying something such as, ‘Simple glasses (or treatment) are not going to restore your vision. However, there are other options such as referral to a low vision clinic that may help you’.”

To illustrate the point, Andrew spoke of a recent patient who had found out about magnifiers while chatting with fellow patients in an ophthalmologist’s waiting room. Seeing someone pull out a compact 3.5x illuminated magnifier to read some material, he asked about it, and discovered that he too, would be able to read with its help. In frustration, he exclaimed, “I have been so depressed about not being able to read for over a year, and I have been having anti-VEGF injections every month… why wasn’t I told about the low vision clinic?”

The Case of Majella*

Living and working with low vision
Being vision impaired does not mean a patient’s working life is over – often they can continue in paid employment, working alongside their fully sighted peers – they just need to modify the way they go about things.

The case of Majella presents an excellent example. Her vision is impaired due to ongoing health problems but her focus is on remaining employed and independent. With an orientation and mobility specialist from Guide Dogs, she learned skills to enable her to get to, from and around work safely on her own. Her work at a leading Australian bank, in an IT and service manager capacity, is six years strong and made possible due to low vision training.

Majella’s words speak volumes. “To me, having a job means independence. It means I can do what I want to do. Like anyone, if you don’t have money, you don’t have options. Without the services provided by Guide Dogs and the support of my workplace, there would be more barriers I would need to break down to enjoy the life I want to lead.”

The Case of Helen*

Maximising vision and mobility with macular degeneration and glaucoma
Battling with both reduced central vision and visual fields, Helen was struggling to read the newspaper and do jigsaw puzzles. Her vision was so restricted that she was no longer able to go on walks, and she was withdrawing from her regular activities. There was little left for Helen to enjoy.

Guide Dogs visited Helen in her home for an assessment, then provided her with aids to help maintain her independence and active lifestyle. Modest but tailored prescription tinted sunglasses helped reduce glare and at-home training meant she could safely tackle the stairs in her home again.

“The sunglasses are great; they stop the glare from the sun, which has been very beneficial for me, I like to go for a walk outside every day and now I can do that again.”

We refer nowhere near as often as we should

The Case of Ethan*

Finding the way ahead with paediatric low vision
As a result of congenital cataracts Ethan finds it a huge struggle to participate in school and daily activities. As a result of his poor vision, he constantly walks into things, trips on steps, falls over and hurts himself. Beyond this, there is an emotional toll – his family wants to support him but until recently, felt helpless in their capacity to do so.

Ethan’s optometrist encouraged the family to challenge their preconceptions about his low vision and to attend a low vision clinic at Guide Dogs.

“My patient’s family were so happy with the low vision services provided, that they intentionally came back into the practice just to thank me. They asked me to let Julie Zizic at Guide Dogs know how much it helped their son and brother. Sometimes, as eye care professionals, we need to push ourselves further, and force ourselves to think differently. Previously, I probably would have empathised, but done nothing.”

Where to Next?

On diagnosis, vision impairment does not mean life is over – a specialist can help your patient maximise the use of their remaining vision so they can continue to function as they did before.

Guide Dogs offers patients free in-home assessments and orientation and mobility specialists work with patients to design programs specific for their needs.

Macular Disease Foundation Australia has an excellent publication on low vision services across Australia, which is one of the best resources currently available.

I opened this column with Helen Keller saying, “The only thing worse than being blind is having sight but no vision”. Helen was the first person to be awarded a university degree, despite being deaf and blind. She became a prominent author, a lecturer and leader in her field, developed an institution for research in vision, health and nutrition and was an advocate for various groups of the underprivileged in society, including those who were deaf and vision impaired. She, above all, demonstrated that lack of sight need not hold our patients back from having vision.

As optometrists, we understand how eye conditions can restrict our patients’ functional vision, and how this restricts their lives. In our role as eye care professionals who provide practical assistance and functional vision devices to maximise our patients’ functional vision, we are best placed to refer our low vision patients on for optimal care.

Let’s not be the ones that deny our patients the opportunity to see. It is important that we remember to routinely refer for low vision assessments so that our patients can make the most of their vision, and their lives.

Margaret Lam is an optometrist in theeyecarecompany practices in greater Sydney and Sydney CBD and an Adjunct Senior Lecturer at the School of Optometry and Vision Science at UNSW. She also works as the Head of Optometry Services for George and Matilda Eyecare. Margaret practises full scope optometry, but with a passionate interest in contact lenses,retail aspects of optometry and successful patient communication and management. She has extensive experience in specialty contact lens fitting in corneal ectasia, keratoconus and orthokeratology and is a past recipient of the Neville Fulthorpe Award for Clinical Excellence.Margaret writes ‘mipatient’ on alternate months with Jessica Chi.

*Patient consent obtained for disclosure

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