What is the best way to get detailed infor... - Macular Society

Macular Society

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What is the best way to get detailed information on the present state of my AMD.

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For more than 7 months I have not been seen by a consultant. Have had injections in left eye for wet AMD since Oct 2016. My right eye has dry AMD plus a more advanced cataract which makes the vision in my right eye as bad as my left. I don't know whether the dry has progressed or the cataract? I have no idea what the progression is, if any, in either eye and I feel I have a right to know the facts, but there seems no one to ask when I go for more injections or scans. Who should I ask for detailed info and not just get a lame "its still alright"? Are they obliged to give me the full details?

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4 Replies

Hi ayayay, at my clinic sometimes the nurses in preop will tell me stuff from my notes. Other than that try ringing ( or emailing) your consultant's secretary and asking the direct questions you want answers to.

If it puts your mind at ease, I don't get to see a consultant if everything is going well. So if they're saying ' no change' that's probably why you haven't either. X

in reply to

TY, eyesright

Bobbie915 profile image
Bobbie915

Hi ayayay, I haven't seen my consultant since my first visit 2 and half years ago. I did send him an email with several questions but only got a reply to one, which was, why does my record say SUSPECTED AMD could it be something else? I was told that was what I had when I first attended the clinic. The system doesn't allow it to be changed!!!! If I have questions best to ask the duty doctor!! Made me feel I wasn't worth bothering about. If you do get to see your consultant, I would like to know how you achieve it. x x

in reply toBobbie915

Oh Bobbie, that is awful. Never let them make you feel you are not worth bothering with, because you are. Sending you a big hug . It seems you have been messed about a fair bit.

I will be going for another scan on the 8th May, but this is at another clinic of the same trust some 10 miles away. I am not even sure if they will have my case notes there. Last time I went there, all I was told was "you will be either sent another appointment for a scan at this clinic or get an appointment for another injection at my usual clinic". I had the feeling they were just given instructions what to do and then to sent the result to my original clinic for them to decide the next step. I will try to find out how much they really know about me.

Why is it such a fight just to have few questions answered?

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