No proper infomation

[NettRoy]

Hello, this is abit of a rant really, on March the 8th I had a scan after my third injection which was on the 11th January, i waited a couple of days as I didn't know when my next injection would be before ringing the hospital, I was told that there wasn't any appointments booked, when I said that I have only just started my treatment and I have been 9 weeks without an injection the agent booked me in for yesterday. After my chart test the consultant came in and did what he does everytime, walks straight past me looks at the computer screen and on this occasion just said ok 9 weeks and walked out, so I called him back and asked him about the scan, he said better than it was, but there are still some bubbles, and went again. This is not what I expected to happen, I did expect some input from him, everything I need to know comes from the friendly people on here. Anyway thank you if you have read this.

Regards

Jeanette

[Koalajane]

This is not good. I don’t see the same consultant every time but they usually spend at least 5 minutes examining my eyes and explaining things. I get told when my next appointment will be and I get my appointment letter 2 days later. I am happy with my care

[Cockerspadge]

I’m sad and concerned about your experience. My consultant always takes time to sit with me and discuss my sight. I feel very involved, he always asks me what I think, he always explains things, we always agree on a plan of action & he always sends me a copy of my hospital letter.

[Shimano]

Big sympathy Nettroy. Very scary not knowing what’s going on. My appointments have also been irregular. I used to get a letter two weeks prior to appt which meant I could organise transport for the thirty mile round trip. Over the last six months I have been having to phone the department to get an appointment, have had them changed or cancelled at the last minute and for appt in January was told on Thursday afternoon that if I could ge to the hospital for 8.15 am the following morning I could get the injection. My children live 80 miles away and have to get time off work so it has been a nightmare. I know the hospital is under great pressure and I hate the feeling that I am harassing them. As I am one of a very small minority who have a very painful experience because aanaethestic drops don’t work on me I am terrified anyway. At times it is too much. There is obviously a big variation in quality of care for MD between hospitals as your your replies show. About time patients were asked for feedback I think. All the best to you.

[RP1944 in reply to Shimano]

Hi Shimano, I saw your reply to Nettroy and you are not alone with the anesthetic drops not working. Every Eyelea injection I have hurts and very often my eye is very sore afterwards. I often feel like giving up on the injections. It seems the quality of care we get varies a lot, doesn’t it? Best wishes to you

[Shimano in reply to RP1944]

Hi rp1944. The pain afterwards Is probably due to sensitivity to iodine which they use as antiseptic. After almost beating my head off the wall for 24 hours after a jag I finally got them to use An alternative . This has sorted the after jag pain. Also, after information from this site I asked for an anaesthetic injection of tetrazine in addition to the anaesthetic drops. You must wait for exactly 5 mins for this to work. I actually had two appointments where the pain was great,y reduced and was far less stressed going for treatment. Unfortunately, with all the mix ups last time I did not get any drops at all and there was no wait for the anaesthetic jag to kick in. It was really awful. Since then am back to constant state of anxiety re next appt, which I still haven’t received. Will have to phone again, then have to speak to consultant and insist again to get what helps a bit. The jags are bad enough, but all the hassle is really wearing me out, and I’m usually pretty good at coping on my own. I do hope this is helpful rp1944. It is really hard fighting your corner, especially when you appreciate the staff are probably running on fumes. All the best to you.

[SueMulk in reply to Shimano]

Hi. Injections in my left eye are painful but not in my right eye. I always tell the nurse doing the injection that it hurts and they have been using more anaesthetic and shifting where the injection is which has helped. I also have very dry eyes and use artificial tear eye drops. This means I don’t flush the iodine out of my eye easily. They now rinse my eye out thoroughly after the injection plus I have been told to use their drops hourly rather than 4 times a day. This is a big improvement.

[Shimano in reply to SueMulk]

Thanks for your response Sue. Helps to know there are others out there in similar boats. My next jag should be on 1st April. My right eye is pretty bad. Phoned last Monday but to date no appointment arrived so not able to organise transport. Happy to hear you are finding an improvement. It makes such a difference. Good luck.

[Penelopeflower]

Very sad to hear this, as others have said the consultant, certainly in my case, spends five or ten minutes checking my eyes, explaining how the fluid content is, and then confirming the next injection, cannot fault the care I receive. Perhaps the Macular Society will be able to suggest how you can handle this situation and perhaps take the matter further up the chain. Very best wishes.

[Beldie]

Hello Nettroy. I was so sorry to read your rant, which was perfectly justified. I only once experienced something the same; quite hurtful when you're worried already about the forthcoming brutal procedure. But your chap makes this a habit - not good practice. I have had over 50 injections and am now aged 90; my experience throughout has been to inform myself as much as possible about wet AMD and its treatment, and to ask questions. I'm fortunateto be able to use the computer and recommend websites like NHS, Mayo Clinic, Moorfields Hospital, Macular Society. I do recommend joining the latter. I always ask questions of the consultant when I need to. Like some others, I've had to deal with the great pain (albeit short-lived) of each injection. About tetrazine: I had that again the other day and the injector told me it was not normal procedure to use both tetrazine and eyelea at the same time. Who knew? She also chose to inject into a different quadrant of the eye and it did make a difference. I have to add that my GP has prescribed codeine 30 to take an hour before injection but I'm not sure that helps. As patients we're caught between not wanting to harrass NHS staff and avoiding antagonizing them. They are just humans like us so I always try to make a connection with all of the clinic staff when it's possible - not so easy if you attend a very large city hospital. I wish you all the best in your future treatment.

[NettRoy in reply to Beldie]

Past rant

[NettRoy in reply to Beldie]

Hi Beldie, thank you for your message, I don't think things will change with this consultant, also he seems to the only one there, there isn't anyone different

[FireDrake]

Hi I have had many problems with getting appointments. My advice is to complain in writing to the hospital. I know it seems like a drastic action but since I complained I have had my appointments on time. good luck

[NettRoy in reply to FireDrake]

Thank you I will look into that