What would make your eye care better? - Healthwatch England
The price of waiting
Linda, 60, from Bury, told us how difficult it has been to get the eye care she needs.
Linda had lens replacement surgery on both eyes in 2013. Ten years later, in May 2023, she found out that the lenses inserted into her eyes were from a faulty batch and were deteriorating. The lens in her right eye was particularly bad, and as a result, a hole developed in the back of her eye.
"I had really bad vision in the right eye. I was falling over, I couldn't see in the dark, and I couldn't make out shapes," she says.
"I couldn't even clearly see my partner sitting across from me at our breakfast table."
Linda's optician advised her to get a referral from her GP to a specialist eye consultant. Linda got this referral in the summer of 2023, but she wasn't actually examined until December, at which point she received a diagnosis and joined a waiting list for an operation.
Linda's treatment team were unable to tell her when the operation would take place, but the NHS app said she could expect to wait at least 22 weeks for her appointment. That timeframe came and went, but there was still no word on when her operation might take place. Meanwhile, it was getting harder for Linda to cope.
Her vision was severely restricting how well she could perform tasks, and her mental health was deteriorating. Her partner (who has physical disabilities) also had to take on a lot of extra responsibilities as a result.
Unable to wait any longer, and living with the uncertainty of when her operation might take place, Linda decided to pay for her operation privately (and from the same doctor she was waiting to see via the NHS). Her private operation took place in early May, costing Linda over £5,000.
At the time of writing, Linda was recovering from her operation, but with a similar diagnosis in her left eye, she's facing another expensive medical procedure – or a long and uncertain wait for NHS care.
This experience has shaken Linda's confidence in the health services. "I can't be doing with waiting for an NHS appointment," she says. "You only have access to care if you've got money in your back pocket.
No end in sight
Aubrey, 75, is a retired cinema industry manager living in Leeds.
In January, at a routine eye care appointment, Aubrey's optometrist diagnosed him with ectropion, an irritating and painful condition affecting the tissues around his eyes. It causes discomfort and shooting pains. His eyelids are glued shut every morning, and he has to carefully open them up with his fingers. It is also starting to blur his vision.
Aubrey's optometrist referred him to the eye clinic at the local hospital. But when Aubrey shared his story with us in July, he was still waiting to hear about when he'd get a specialist appointment with a consultant.
"I haven't yet received an appointment with the hospital eye clinic. I know the condition is not life threatening, but it is uncomfortable," Aubrey says. "I've no idea when I will get to see a consultant and then probably another long wait for the necessary procedure to fix the problem!" Aubrey hasn't received an explanation from the eye clinic as to why it's taking so long for his appointment to be scheduled. He visited his GP surgery recently (for another issue), and staff said it was "crazy he was waiting so long" for his eye appointment. The only update he's received is a question via the NHS App, asking if he'd be willing to travel out of the local area if it means getting care more quickly.
Aubrey told us he is happy to travel anywhere in England if it means getting treatment.
When he eventually gets an appointment, Aubrey isn't confident that this will solve the problem, and believes he may have to go private to get the care he needs – costing him as much as £4,000.
"If they say it's just cosmetic, I've heard that they probably won't do it on the NHS," he says.
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