Jan’s story

The anxiety trying to get appointments has been frustrating though, and I know I am not alone.

I was diagnosed with glaucoma in 2015 during a routine eye test, which I had every year due to a family history of the disease. I was sad about the diagnosis, but not very surprised. I had watched my mum become partially sighted due to glaucoma and so had followed her progress, but I was working abroad a lot when she received much of her treatment.

I didn’t receive much information about glaucoma at first. The clinicians never mentioned glaucoma UK, I wish I had known about the charity on my first visit. It would be helpful if they gave newly diagnosed patients a leaflet. As it was, I found glaucoma UK booklets in the hospital waiting room, which were very useful. My sister also has glaucoma, so we find it helpful to chat about it sometimes.

My treatment began with eye drops, but I often found these to be ineffective or else I developed side-effects. I’ve had two laser treatments in the past, but my glaucoma still seems to have progressed fairly quickly, which worries me. We live in the country, and I don’t want to rely on my husband to always drive.

It is difficult to know how much my glaucoma has been affected by COVID-19.

The delay in getting seen by a clinician was very worrying, because I knew my sight had deteriorated. I had an appointment in January 2020 and should have had a follow up in July. This was delayed, although I did have all the tests in August. But I was unable to see a clinician again until the end of October 2020, following repeat tests.

I was originally due to have a trabeculectomy, but I’ve now had a Preserflo MicroShunt implanted in one eye instead, in December 2020. It may be that this new operation is better for me than the planned trabeculectomy, in which case the coronavirus has done me a favour! At the time of writing this, it has been one week since the operation. My eye seems to have healed very well and improves every day.

The anxiety trying to get appointments has been frustrating though, and I know I am not alone.

It would be great to always have a point of contact at the hospital, so that questions can be asked. The medical secretaries are very good but not always easy to contact. For many years, the problem in the NHS seems to have been more and more patients and fewer staff. I have always been very grateful to the hospital staff. They are usually helpful and kind, despite working so hard under very difficult circumstances, and with extremely busy clinics. COVID-19 has just made these clinics an even bigger problem with the many inevitably delayed appointments.

My advice to anyone newly diagnosed with glaucoma is to make sure you record all your treatments, problems and questions, so that you keep a good history of everything. Always mark your next appointment on the calendar and if necessary, phone to make sure they haven’t forgotten about you. Understand as much as you can about the disease and join organisations such as glaucoma UK for their help and advice.

Following on from finding glaucoma UK leaflets in the hospital waiting room, I joined as a member and it has been invaluable. I especially enjoy the magazines and the Health Unlocked forum. The digital talks that have been held recently have been excellent, I do hope they continue after COVID-19. I have also used the Helpline and Buddy scheme, both of which were very well organised and helpful.

My experience has really made me value the importance of eye tests. I would urge anyone to always make time to have regular eye tests as glaucoma often has no symptoms, even when damage has already been done. By getting an early diagnosis, you have the best chance to preserve your eyesight.