On Wednesday my eye clinic phoned me, at first I thought it was to confirm my eye injection appointment the next day but instead it was a lady saying my consultant says I don’t need an injection for 4 months.
So I made my case. I am in my very early 50’s I have DMO not AMD I only have 1 useable eye now and so they, at my other appointments have told me they will always inject every month to protect my better eye. I am on Eylea having already had avastin and lucentis and have had injections every month for 9 years I used to have injections in both eyes but my left one never responded and my sight failed too much to qualify for injections anymore.? It is 1/60 snellen. Every time I go to the clinic regardless of the OCT result I have an injection and even then the sight in my better eye is 6/36 -6/48
So having made my case her reply was ‘ Yes I could have an injection the next day’ infact she said ‘Please do come for your injection’.
I think anyone in my position would have done the same. I have already lost my job some 8 years back and had to give up driving 7 years ago so I felt justified in ‘ fighting’ for my injection. When I went yesterday he said indeed I needed an injection and that I can definitely have another at the end of the month.
Written by
tallyho
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I had a very similar experience. Phone call a few hours before appointment saying cancelled, me saying that I only had the one eye, that I'd seen a leak on the OCT when I had the scan (three weeks previously), doctor reviewing my case, and me getting my shot.
I know what it’s like to have to self advocate. We are brought up to not make a fuss, others know best. When my dry went to wet three years ago - I was told I couldn’t begin treatment until I’d had a fluorescein angiogram. I waited for the appointment but heard nothing. I phoned. The fluorescein scanner was broken and awaiting repair. Knowing I had days within NICE guidelines to start treatment I made waves. It was horrible because I was made to feel pushy and selfish. In the end the hospital took the decision to commence injections regardless and I had my first at the last moment. I later learned the scanner had been broken for three months and it didn’t get fixed till nearly a month afterwards
Well done, tallyho. I know what it is like only having one poor eye. How much consideration was given to your case for them to try cancelling your injection? I know this is a tough time and most of us don't like complaining, but we want to hang on to whatever sight we have left. xx
Thank you all for posting the above! You may remember I was very down recently, left on the waiting list; and had approached PALS for help. It must have worked. Good news! I was phoned by a very kindly booking clerk, and have an appointment for my 2nd. Eylea injection, (in this treatment), on Tues 7th.April. That's not bad. It is only a week "out of NICE guidelines.
The procedure has totally changed. No waiting, straight in and out. We shall see: will tell you how it went. All the best everyone...….keep self-advocating. xxx
I'm so glad you made your case and got the injection you needed. I think it is difficult for folk with good vision to fully understand our need to preserve what eyesight we have left. I have had very poor myopia for years with MMD in one eye since my 50s and now have PED in my 'good' eye. I will undergo any treatment that preserves the sight in that eye. You shouldn't have to fight your case but good for you I'm so glad you did Best wishes
Hi Tallyho, I had an appointment for injections last Monday and I too got a phone call, it was to do with the fact that the private hospital has been handed over to the HSE and now the hospital is public under their authority for at least three months due to convid19, I will be contacted when my consultant comes to some arrangement with hospital re getting a sterile room to proceed with injection clinic..
Please God we will all stay safe and we will get the treatment we really need to protect our precious sight.
I had my injection my hospital is absolutely brilliant and always being clean but temp was taken as I went in and hands cleaned with hospital sanitizer I love the NHS I would not be able to afford the monthly injections without it
Great news and good for you making your voice heard. I'm in the position of one eye needing injection as other eye has to much scarring (I'm told)
so been a yr since they stopped inj. I also know how you feel when you say 'pushy)....I got concern team involved when my apps were getting longer apart, I was put with a different consultant suddenly ..but one who now injects every month ...
I'm so pleased for you x
Well done!
It begs the question though just how expertly the supposed triage was undertaken that originally decided you wouldnt need it!
Mac Soc please take note - clinics need these kinds of obvious errors highlighting to them so that they can improve over the coming months........
Good for you Tallyho …. not being pushy and selfish but being proactive ….. the name of the game nowadays …. to save every bit of eyesight we have left …. fairly and firmly …. onwards and upwards!
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