Keith’s story

My advice for anyone who is newly diagnosed with glaucoma is to try not to worry. There is a good chance that with the right treatment, you will retain your sight for the long-term. However, do take an active interest in your diagnosis and treatment.

I was diagnosed with glaucoma in October 2007. But by that time, I had been living with progressive sight loss for seven years.  

My mother, her sister and their father had glaucoma. Because of my family history, my optician did annual visual field checks. He first noticed a suspicious defect in my right eye in September 2000. I also suffered slight double vision (diplopia) when tired. I was referred to a specialist, whose conclusion was that I had a static visual field defect related to myopia.  

My optician referred me again in May 2005, when progression of the visual field defect in my right eye caused further concern. The consultant (whose specialism was muscular imbalances – I think because my original referral had included the double vision) again concluded the defect was due to a ‘tilted disc’. He said that glaucoma was unlikely, despite my family history, due to the low measured pressures of my eyes. 

My optician referred me a third time in September 2007, when a visual field test on my right eye showed a further deterioration. The consultant again concluded it was not glaucoma, but he asked for a copy of retinal photos taken by my optician in 2001 to show to a glaucoma specialist colleague. His colleague immediately concluded that I had glaucoma and treatment of my right eye with Travatan drops was started.  

I was relieved that something was finally being done about the progressive loss sight in my right eye that was being shown by my optician’s visual field tests.  

I had a good understanding about glaucoma from discussing the disease with my mother and with my optician over the years. I cannot praise my optician highly enough for his skill and diligence. However, at the time of my diagnosis, I was not given any information from the eye hospital, such as an explanatory booklet about glaucoma or even an explanation of how to administer the eye drops (other than the leaflet that came with the drops themselves). My mum gifted me Glaucoma UK (then known as the IGA) life membership, and the charity’s magazines provided a wealth of useful information that helped me better understand the disease and its treatment options.  

In November 2008, my corneal thicknesses were measured and found to be thin. This means that my measured eye pressures may always have been underestimated by about 5mmHg.  

Having started with eye drops in my right eye when I was diagnosed in 2007, I began using them in my left eye from the end of 2010. I have since had many changes of drops.  

From the beginning of 2011, I was under the hospital’s glaucoma clinic, but after seeing the lead consultant for initial assessment, I usually saw a different registrar at each six-monthly check. From December 2010 to May 2014, the hospital only asked me to do 10-2 visual field tests on my right eye. A wider angle test may have shown earlier that my right eye was continuing to deteriorate. However even the narrow field 10-2 test showed a worsening trend. In May 2014, I showed the registrar a graph that I had created from my own records of my field results over several years – showing the clear progression. He took this to the clinic’s consultant lead, but they concluded that there was ‘no progression’, which made no sense to me.  

I called the Glaucoma UK helpline with my concerns. My parents had previously used the helpline on several occasions when they had questions about my mum’s glaucoma and had always found it very helpful. The helpline advised me to get a second opinion. I got my optician to refer me to a private glaucoma consultant at a different hospital. The private consultant performed a trabeculectomy on my right eye in July 2014, which stopped the progression.  

I have since continued to see the same consultant. I think it has made a very important difference seeing the same consultant at every check, rather than a registrar who I’d often never seen before. Over the last three years my consultant, in addition to my on-going glaucoma care, has done cataract surgeries on both of my eyes. My right eye pressure slightly increased post-cataract surgery and I am now on preservative-free drops (left eye – Tiopex, Trusopt and Monopost and right eye – Tiopex only).  

Whenever I think about my condition, it creates a mild level of anxiety about what the future holds regarding my sight. My glaucoma was one of the reasons I took early retirement from full-time work at age 54 in 2015, although I have continued to work part-time. There has been minimal impact so far on my family. We have two sons, who I encourage to have regular visual field tests at their opticians. They have accepted there is an increased risk of them developing glaucoma, but they see it as a treatable condition. 

I think my story, with the seven-year delay in diagnosis, and then the failure to consider the progression of sight loss in my right eye over the long term, illustrates two important areas.  

The first is that the NHS should ensure all people referred for possible glaucoma are assessed by ophthalmologists who have specialist knowledge of glaucoma – a general ophthalmic consultant may not recognise the early signs, as in my case.  

I also believe that the NHS should ensure a standard wide angle visual field test is taken by glaucoma patients at every test. I’ve heard that this is already the case, but it wasn’t in my experience. Also, instead of only comparing results with those from the previous test, any long-term trends should be considered and acted upon. Again, this apparently should already be the case, but it wasn’t in mine. These things should be done across the board for all glaucoma patients. I think that some recent visual field test machines have the capability to record previous results and plot whether there is a statistically significant trend. 

My advice for anyone who is newly diagnosed with glaucoma is to try not to worry. There is a good chance that with the right treatment, you will retain your sight for the long-term. However, do take an active interest in your diagnosis and treatment. Ask questions if you have any concerns. 

Make notes of any questions you want to ask before attending hospital appointments – and ensure you get them all answered. If you have written notes, you are much less likely to forget to ask about something that is important under the pressure of a short appointment slot. If you can, take a friend or relative with you to note what the consultant says about your condition.  

It’s also important to establish an infallible routine for applying your eye drops. I did – though it didn’t stop the progression in my right eye, which only halted after my trabeculectomy.  

Most importantly, I would say make sure you understand the results from your visual field tests and keep records of these so you can check yourself if there are any changes.  

With hindsight, I feel I was too ready to accept the conclusion that I didn’t have glaucoma. I guess it was what I wanted to hear – despite the evidence to the contrary. I should have challenged this harder with the hospital during the seven years between my first referral and eventual diagnosis. And also when my right eye visual field was continuing to deteriorate but the hospital glaucoma clinic told me there was ‘no progression.’

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