"Concerns about service for my chronic eye condition"

I was diagnosed with Coats' disease some years ago. This condition is rare and affects the blood vessels at the back of the eye and can lead to a detached retina. The consultant performed laser surgery on my eye to try to limit the damage. However the consultant said that I should be monitored at least every 12 months due to the risk of a detached retina.

For a time my eye was monitored as the consultant recommended. However I am no longer being invited for a regular review. When I was being monitored, apart from one occasion, I always saw a different junior eye consultant. And the reaction was worryingly different from one visit to the next: one consultant would reassure me that there had been no change in my condition but that I should continue to be monitored; other consultants have been very dismissive implying that I am wasting their and my time.

Also every time I visited the eye clinic the nurses who prepare patients for examination insist on me reading from an eye chart. I have no problem in doing this with my good eye but I can see no letters with my bad eye (I only have peripheral vision in my bad eye). The nurses can't believe this and insist that I try harder. This is a complete waste of time and money and occurs each time I visit the clinic, despite my (gentle) protestations.

My consultant has told me that if I notice a change in my eye condition I should contact an ophthalmic surgeon as soon as possible. However when I have become concerned by changes to my eye and have visited A&E, I have been triaged as a low priority despite the risk of a detached retina. I have been asked to read letters on a standard eye chart despite me telling the triage nurse that this is a waste of time. I have waited over four hours to see the A&E doctor on duty, who clearly has no knowledge of the condition and can only refer me to the eye clinic days later.

I'm concerned that as I grow older I will lose what sight I have left in my bad eye. I'm not convinced that A&E departments understand eye conditions and therefore struggle with the appropriate action.