Rebecca’s story

If you’ve been recently diagnosed, I’d advise to look at the Glaucoma UK YouTube channel and the support group videos.

I was diagnosed with glaucoma in February 2024. My diagnosis came after a referral to the hospital following an advanced test at the optometrists. This is the usual pathway in Sheffield, though I know other areas work differently. 

I’d first been referred to Alex Gage Opticians in 2016 from Specsavers under a primary care referral scheme because I kept failing the puffer test. Alex took a photo of the back of my eye and said something that made it sound like it was probably okay. During the pandemic, I went back to Specsavers because I broke my glasses and they swapped my lenses into new frames but I don’t remember eye test being quite the same. 

In 2024 I thought I should get a new pair of glasses, so I went back to Alex Gage. I couldn’t remember what the additional test in 2016 had even been for, never mind anything about follow up. Before I had a chance to ask, they took a full history and a comparison photograph. I could tell it wasn’t good news. My nagging doubts were right, even though I’d had no sight loss symptoms. They referred me to the hospital, where I had to wait a couple of months and then went through a battery of tests using all sorts of equipment.  

The diagnosis came after two and a half sessions of tests, so it wasn’t a surprise. I didn’t receive information that helped, and I’ve instead found the resources on Glaucoma UK useful. I’ve also joined some of the support group webinars. Before seeing a specialist, I was aware of glaucoma, but I certainly didn’t understand what I do now. 

Glaucoma has had an impact on my life. I’ve started running with sunglasses and a peaked cap when it’s sunny and I’m trying to be more kind to myself. There have been delays in reporting results from hospital tests before a consultant can see me, though I’ve been offered regular consultant-led treatment. My issue has been that while the hospital has copies of all the tests, the results aren’t externally visible. I did show the letter in the NHS App that had been scanned into the GP record to the optician, and they explained the results and outcomes to me. It’s impossible to know what impact any delays have had, as it’s very difficult to get this sort of information from the consultant. 

If I had the chance to raise awareness, I’d probably run with a glaucoma T-shirt. I first heard about Glaucoma UK when I looked for information to interpret what the consultant was saying. I’ve used the support groups and leaflets and found them helpful. I think Glaucoma UK could support hospitals to organise their waiting rooms and appointment information.  

I’m sharing my story because patient stories are what I look for when I search for information. I hope to achieve some satisfaction that I might have helped someone and that the NHS should invest in frontline services, and that care from frontline staff is really important. 

I don’t have a family history of glaucoma, and it’s possible that’s simply because earlier generations didn’t get eye tests or had other health issues. I’ve informed close relatives about the increased risk, and they understand. If you’ve been recently diagnosed, I’d advise to look at the Glaucoma UK YouTube channel and the support group videos.

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