Rachel’s story

Although I panicked when I received my glaucoma diagnosis, educating myself about the disease and accessing Glaucoma UK’s support sessions resources really helped me reduce my anxiety.

My initial reaction to being diagnosed with glaucoma was sheer panic. I was quite worried and assumed I would lose my sight – I had no idea when. I received the diagnosis in June 2022, shortly after the pandemic. The healthcare services provided to patients were impacted by COVID-19, and I suspect there is a significant backlog. My appointments were frequently cancelled, and the eye clinics seemed extremely short-staffed. At my first appointment with my consultant, I wasn’t provided with much information other than “See you in three months.” There were no lifestyle recommendations or detailed guidance on treatments offered.

After a couple of check-ups, my appointment in May 2023 confirmed that my pressures were stable. However, there was no consultant available to advise whether there had been any deterioration in my sight.  

I knew very little about glaucoma when I was diagnosed, and it does not run in my family. I worked for RNIB about 30 years ago, so I had a basic understanding of sight conditions, but no understanding of the range of diagnoses.  

I found Glaucoma UK through a Google search. As someone newly diagnosed, I found their information and support very reassuring. I imagine that as I become more familiar with my condition, I’ll want to explore additional treatment options and know what questions to ask my consultant. It’s good to be updated on new developments and community-based check-up options, which is also valuable.

The articles in Glaucoma UK’s monthly newsletter, Focus, are great, and I have attended a few support sessions on Facebook. The charity’s services have been very helpful, and I’ve been impressed by the information and articles they provide – especially the ones with clear explanations of diagnoses and the breakdown of medical jargon used in letters from consultants.

My diagnosis followed a routine regular eye check-up at the optician’s, where an anomaly was detected during the OCT scan. The optician referred me to my GP for further assessment. Although the ophthalmology department acknowledged the referral in February 2022, I wasn’t seen or given a diagnosis until a few months later.

Opticians can detect much more than just eye conditions during a routine test, so it’s crucial to get your eyes checked regularly. If you are diagnosed with glaucoma, try not to panic. However, I would advise to politely but persistently following up with your GP or outpatient appointment team if you’re not seen within a reasonable timeframe. I’ve found that I often had to take the initiative to book appointments myself, even though I was told they would be arranged for me – which rarely happened.

Although I panicked when I received my glaucoma diagnosis, educating myself about the disease and accessing Glaucoma UK’s support sessions resources really helped me reduce my anxiety.

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