Claire’s story

To anyone newly diagnosed with glaucoma, I would say: push to make sure you get the treatment and support you need.

I was diagnosed with glaucoma in November 2021. The detection process started earlier that year, in January 2021, when I visited a community ophthalmologist for a routine sight test. She noticed I had a developing cataract in my right eye and mentioned that this could sometimes cause pressure to build. She advised a referral to the Eye Hospital, but at the time I wasn’t concerned. I had no symptoms or any idea that something more serious might be going on. 

Unfortunately, my hospital appointment was delayed by nearly a year, although it was eventually brought forward by two months. By the time I was seen, which was 10 months after the referral, I found myself in a medical emergency. My eye pressures were extremely high (65 and 45), and I was given emergency laser treatment before I could even leave the clinic. I wasn’t told my diagnosis at that point, and I didn’t think to ask as I was just swept along with the urgency of it all. In a way, I felt relieved the appointment had been brought forward, as I now realise a further delay could have left me blind or with even more irreversible damage. I assumed the treatment and eye drops would resolve things, but unfortunately, I was wrong. 

As a nurse, I thought I had a basic understanding of glaucoma, but after my diagnosis, I began researching it and quickly realised just how little I actually knew. It’s far more complex than I had imagined. 

Since then, I’ve had a range of treatments, including laser therapy, up to four types of glaucoma drops, acetazolamide, and finally cataract and clear lens removal with GSK. 

By the time I was diagnosed, I had already lost almost all vision in my right eye, retaining only a small area that isn’t very useful. That eye tends to shut down, and what little sight remains is limited in detail and colour. My left eye was better, but over time it too has deteriorated, possibly because the optic nerve was already damaged when I was first seen. I’ve also experienced issues with hospital follow-up; I was lost in the system twice, which contributed to further deterioration. Now, I have very limited peripheral vision, and while my central vision in the left eye is still functioning, it is affected by glare. I now use a long cane. 

The delays in diagnosis and treatment have been significant. My angle closure glaucoma diagnosis was delayed, and surgery was cancelled twice, despite me being high risk. Promised appointments often didn’t happen, and the time between reviews was longer than advised. 

The COVID-19 pandemic had a serious impact on my diagnosis and care. Although my GP was willing to refer me, the surgery told me that the eye clinic was closed to referrals due to COVID. This was during the second year of the pandemic. There was no triage system for referrals, and the entire process felt chaotic and disorganised. As a result, I was diagnosed at an advanced stage, which has been much more difficult to manage. My vision has continued to decline, and I believe that if I had been diagnosed earlier, my treatment would have been simpler, and more of my sight might have been saved. There didn’t seem to be any risk assessments or proper consideration given to the impact of shutting down services like this. 

There’s no family history of glaucoma in my case, but I’ve spoken to my close relatives about it, so they are now informed and aware of the increased risk. 

If I could raise awareness, I would stress the importance of early diagnosis. People shouldn’t be complacent about their eyes or take their vision for granted. Glaucoma is a complex disease. For many people, it’s not just about using eye drops and carrying on as normal. 

I first heard about Glaucoma UK through my own research. Since then, I’ve used several of their services, including the helpline, Health Unlocked, and support groups. The webinars, in particular, have been extremely helpful, especially at a time when I was struggling with my mental health. I had a bit of a crisis and realised I needed support. The information and reassurance from the webinars really helped me understand what was happening and eased my fears. I’d highly recommend them. 

To anyone newly diagnosed with glaucoma, I would say: push to make sure you get the treatment and support you need. I tried to stay positive, but it’s been a rocky road. I was in shock at first, and it took a few months for the reality to sink in. But reaching out for help made all the difference.

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