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Learning from experience to improve a patient's journey

Belinda Kidd and Ryan Smith have three things in common. They’re both forward-looking and exude a feeling of quiet optimism, they both spend a lot of time on the computer for their respective roles in administration and graphic design, and they have both had an enucleation procedure (surgical removal of the eye ball) at the Eye and Ear in the last ten years. This is why they now share a fourth similarity. They are both members of a special focus group set up by our Patient Experience team to discuss enucleation with former patients as a way of assisting other patients.

Responses from the focus group will be collated to help to inform a new patient information package that includes a patient video and updated fact sheets that are designed to be discussed between doctors and patients during consultation. Members of the focus group will be engaged in all stages of the process including storyboarding and scripting for the video and proof-reading fact sheets to ensure they are easy to read and in plain language. This type of work is regularly conducted at the Eye and Ear for updating our standard patient information, but the enucleation package is a larger project due to the decision to completely rebuild the information from the ground up.

The focus group met in September and spent a day discussing the many challenges and complexities felt by patients undergoing the procedure. For Ryan, the most surprising initial observation was the diversity of the group he was in. “It struck me on the day that everyone had different reasons for the operation,” he said. “For some, enucleation was a very sudden and urgent thing, whereas for me it was because of a long-term degenerative condition. So, we all needed information during our journeys but the time periods were different.”

Even between Belinda and Ryan the difference in circumstance is marked. Belinda had been experiencing blurred vision in her left eye and sought the advice of an Optometrist who referred her to the Eye and Ear for a suspected retinal detachment. After some investigation it was determined a melanoma at the back of the eye was responsible for the visual disturbance and surgery was recommended due to the proximity of the cancer to the brain. Everything happened very quickly after this. “The idea of cancer was more of a concern to me,” said Belinda.  “It wasn’t until my eye was removed and I felt the melanoma was out of my system that I could even process losing my eye.”

For Ryan, the removal of his eye followed a long and difficult battle with Anterior Uveitis a chronic inflammation of the eye related to his Ankylosing Spondylitis (chronic spinal inflammation). “Part of me was relieved or even looking forward to it. At the end we were just pouring eye drops into my eye and doing what we could to save it,” he said. “I was even thinking ‘I really want a prosthetic eye’. At least my appearance could return to normal after a long time battling this thing … I had an idea of the enormity of it but I didn’t spend a great deal of time thinking of the detail. I think as a patient you think you know what to expect but you really don’t.”

 “I wanted to take part because there were moments where I definitely felt uncomfortable – I felt there was a lack of information and I wanted to change that,” said Ryan. “It’s also a way of showing gratitude and of giving back.”

For Belinda she was determined that the emotional process that she believes only sinks in post-surgery wasn’t forgotten. “The pain after the operation was unexpected … I just wanted someone I could call or speak to,” she said. “Just someone to turn to for ‘what can I expect?’’

She is hopeful that gathering common experiences via the focus group will allow for a more in-depth patient information package that goes beyond the physical and medical considerations and is realistic about some of the lifestyle changes that come from the procedure. “I’m still learning how to do things without binocular vision,” she said. “Two years after my operation I’m still not confident to drive and in crowds I can’t see if someone approaches me from my left.”

Both Belinda and Ryan note that the loss of an eye is a personal loss that needs to be grieved in its own time, but both are extremely positive about the future adjustments of life with monocular vision and philosophical about the advice they would share with future patients.

”It made me re-evaluate what I wanted from my life and what I enjoy,” said Belinda. “So I hope we can take away the fear a bit. Everybody will be anxious or nervous before surgery and that’s natural. I just want people to get accurate information. Don’t google it. Go to a proper resource.”

For Ryan, it’s about taking your own power back. “In this scenario you don’t really have a sense of control, but you do have control of how you respond to what’s happening,” he said. “I would urge people to get as much information as you can, talk with family and friends and use your resilience and the tools in your toolkit to get through. As strange as it might sound, even try to have a sense of humour about some of it or a sense of momentum toward the future.”

The future is also where another similarity between Belinda and Ryan lies, as both have decided to take some time out to go travelling. For Belinda the bright lights of New York City and North America are calling. For Ryan, plans are underway to gather more content for Freewheel Weekends his wheelchair accessible travel blog.