A Lifesaving Call

It was an advertisement in the Coffs Harbour Advocate that alerted Dennis Sutton to the possibility that something was wrong with his vision. Macular Disease Foundation Australia was running its annual campaign to promote awareness of macular degeneration. The ad had an image of the eye and simply asked readers ‘have you checked your macula?’

“I was on the beach, looking out to sea, checking the conditions. I was about to head out with a mullet crew. The horizon was the biggest wave that came along that day – it looked like a mountain on the ocean. And that mountain moved with me, wherever I moved,” Dennis explained.

He said the horizon had appeared in this way across the week but he’d expected the phenomenon would correct itself. Plus, it was mullet season and there was plenty of competition on the coast – he didn’t feel he could let the crew down by taking a day off to get his eyes checked.

My optometrist rang and made an appointment and by that afternoon I was in Coffs (Harbour) getting an injection

Dennis picked up the phone and dialed the number on the ad, thinking he was ringing a local eye surgery. Instead, Julie Heraghty, Chief Executive Officer of Macular Disease Foundation Australia, answered his call.

“Dennis told me what was happening with his vision and I recognised the symptoms straight away. I told him there was no way he was going out to sea, and that instead, he had to go straight to his optometrist,” said Ms. Heraghty.

Dennis laughed. “Julie was shocking – she told me what to do and immediately the appointment was made. She didn’t give me any choice,” he said.

Putting off the Inevitable

Although Dennis’s wife had been urging him to see an optometrist all week, Dennis had been trying to ignore the problem. “I honestly didn’t know what was happening, I just thought it was something that would go away – maybe a blood vessel had caused it,” he said. “To be honest I was a bit frightened… but when the mullet are running, you’re out (at sea) from daylight to dark – there were other crews on the beach opposing us – it’s very competitive and I didn’t have time to do anything about it.”

Ms. Heraghty said it’s very typical for people to think they’ll do something about a change in vision once they’ve finished the project they’re working on. “But of course the problem with macular degeneration is that vision loss can occur rapidly. If a person notices a change in their vision, a week before seeing an eye health professional can be a week too long,” she said.

Ms. Heraghty instructed Dennis to stay on land while she put a call through to Eyecare Plus – his optometrist in the small town of Macksville – to arrange an urgent appointment that morning. Kylie Gough, practice owner, said although signs of macular degeneration had been previously identified, Dennis had not made an appointment with the practice for some time. “He was first seen at our practice in 2010. There were drusen and RPE (retinal pigment epithelium) changes at both maculae,” said Ms Gough. “He also has a strong family history of glaucoma through his mother’s family. OCT confirmed dry age-related macular degeneration with a retinal pigment epithelium (RPE) defect in the right eye which appeared likely to progress to wet age-related macular degeneration. He was given the Macular Disease Foundation Australia booklet and instructed on how to use the attached Amsler grid for monitoring changes to his vision at home, and directed to the information on diet and supplements. He returned for review the following year, and then did not return until May 2014 when he noticed distorted vision in his right eye.”

Ms. Gough said it’s not unusual for cases like Dennis to walk through the door. “We can have more than one patient in a day who has experienced a sudden change in their vision, but on average we probably see a couple of patients each week between the two practices. Our staff always try to accommodate patients on the same day they call with sudden vision loss, patients at high risk of developing sudden vision loss from wet age-related macular degeneration or other conditions have a record that is ‘flagged’, advising staff that they need to be seen immediately if they notice sudden changes in their vision.”

She said existing patients are forewarned and often come in knowing what has happened when they notice changes to their vision on an Amsler grid or deteriorating vision. “Others have difficulty understanding the condition, they have physical limitations, or are full-time carers who do not present early enough for treatment to be effective… Unfortunately, some patients prefer to just ignore any preventative advice, which results in disease progression.”

Eye Professional Collaboration

In Dennis’ case, Ms. Gough’s practice acted quickly and, having checked his eyes, booked him in to see an ophthalmologist that afternoon. Fortunately, Eyecare Plus has close relationships with all five ophthalmologists in the Coffs Harbour area, one of whom – Dr. Liam Lim – has rooms within the practice that he uses on a regular basis.

“Two years ago we relocated to larger premises, and considered incorporating a visiting allied health professional,” said Ms. Gough. “Two weeks later we had a visiting ophthalmologist from Coffs Harbour call looking for rooms to use when in Macksville. We had more than enough room, with two fully equipped consultation rooms, space for a reception, spare room for his equipment, and an OCT available which reduced the outlay required to set up a satellite practice.”

Dr. Lim has a practice in Coffs Harbour and a practice in Grafton as well as his rooms at Eyecare Plus in Macskville. He said collaborating with optometry as he does with EyeCare Plus “makes perfect sense” because optometrists were trained to diagnose sight threatening eye disease, which meant he could concentrate on providing the treatment.

“Over 95 per cent of my referrals come from optometrists with about 5 per cent from GPs… optometrists are the primary caregivers, they are the front line on every street corner, in every shopping mall.” Additionally he said, “they have all the necessary equipment for diagnosis”. He said the referral pathway “works incredibly well for ophthalmology” because by the time the patient arrives at the ophthalmology clinic they have usually been diagnosed and provided with preliminary information about the disease and what to expect in terms of treatment.

“Some ophthalmologists feel threatened, they feel their work is being taken by optometrists – but optometry is our friend and sometimes that friendship is misunderstood,” said Dr. Lim.

Ms. Gough said having Dr. Lim work within her practice has been great for her business and for the patients. “My patients don’t need to travel to Coffs Harbour, and it means Dr. Lim and I can discuss the needs of mutual patients, call each other in for interesting patients.” Impressively, Ms. Gough runs a monthly clinic with Guide Dogs Association so that patients can also access low vision services within their local area. Julie Heraghty said this continuum of care is the perfect model for eye health that ensure patients like Dennis receive the very best opportunities for treatment.

Fast Work

On the morning Dennis rang Macular Disease Foundation, and then went into Eyecare Plus, Dr. Lim was practising at his Coffs Harbour clinic. “My optometrist rang and made an appointment and by that afternoon I was in Coffs (Harbour) getting an injection,” said Dennis. “My eyesight came right straight away.”

Since then Dennis has been having regular injections of Lucentis and was recently advised that the vision in his right eye – the eye with macular degeneration – is 20/20. “Dr. Lim told me if I’d waited until Christmas to see him, I would have been blind in my right eye,” Dennis said, adding that he’d also been warned that macular degeneration in his left eye was likely to occur in the future.

Ongoing Management

Management on an ongoing basis includes visits to Eyecare Plus every six to 12 months and regular visits to Dr. Lim for a vision test and injection. He has also been advised to use an Amsler grid to check his vision in between visits, however he admits he is not fully compliant. “I started using the Amsler grid but then I stopped… I thought because I go to Dr. Lim and he tests me every time, I didn’t really need to use the Amsler grid.”

Ms. Heraghty said this misunderstanding is not unusual. “It really is important that key messages about disease prevention and management are reinforced at every visit. These steps can help save sight,” she said.

Dr. Lim said although macular degeneration is now very well known in the community (“everyone knows someone else who has had injections in the eye – it’s not rare any more”), patients can be overwhelmed by the information they’re given when first diagnosed.

“A big reason for patients dropping out of treatment is that they don’t understand… macular degeneration is a complex long-term disease that requires a case by case, individualised treatment regimen, so… when the diagnosis is delivered (patients) don’t always take all the information in… I always acknowledge that they will have questions and I encourage them to keep asking questions every time they visit.”

Additionally, he said he has print outs about macular degeneration that detail the treatment needed, how much it costs, and how often the patient will need to visit his clinic. He said that if he hasn’t done an adequate job of explaining something, optometrists are able to fill in the gaps and provide reassurance.

At Eyecare Plus, Ms. Gough provides booklets printed by Macular Disease Foundation Australia, an Amsler grid, diet/supplement information, advice on quitting smoking and UV protection… and, of course, encourages regular eye examinations – early treatment equals better outcomes.

“The booklets are an avenue of impartial communication where patients can discuss their diagnosis, check they are being adequately managed, and have their questions answered,” she said.

Reassessing Life

Dennis said his experience with macular degeneration has caused him to reassess life and he’s now looking forward to retiring and taking time to travel with his wife, Joy.

“I used to love fishing but I don’t love it now. After 44 years, I’ve had enough. It’s getting harder on my body, being out there on the ocean, usually on my own, pulling traps in from over the side, hauling tubs, stacking the fridges. “Instead I’d like to go to Western Australia, Tasmania and New Zealand. I don’t want to be a grey nomad – I’d rather jump on a plane, stay in a motel. Head off for a week or a fortnight, come back, then go again… I’ve just got to sell the business.”

Melanie Kell is a senior writer for mivision and, on occasion, consults to Macular Disease Foundation Australia.