The joy of being listened to: I had 2 very... - Macular Society

Macular Society

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The joy of being listened to

folkmusicilike profile image

I had 2 very bad experiences following 2 injections. After the first bad experience, I don't think I managed to explain very well what the problem had been - pain, grittiness, unable to keep my eye open, extreme soreness and stinging for 24 hours - or the medic I spoke to didn't ask the right questions.

After the second time, with a worse reaction, I was more insistent (also brought my son in with me!) and felt that the registrar really listened to me and made sure the person administering the injection heard what I had experienced.

This time it was clearly explained which antiseptic would be used to clean my eye, and that an antibiotic would be used at the site of the injection instead of iodine. They told me that it was a question of eliminating the things that caused the problems I had experienced.

This time I had no problem at all. Indeed, I was so ok that I forgot to use the antibiotic drops I was given and all was fine.

As I now know that allergic reactions happen the second time around I hope that, even if I have a reaction the next time - gradually, the medications administered will be cleared for use on my eye.

Making myself heard and being listened to in our very busy, rather procedural, NHS has made an immense difference to my experience of this treatment. I now feel that I can have some control, as well as receiving a treatment that could save my eyesight.

I can only say to anyone who is feeling doubtful or fearful - try to explain, as well as you can, what the experience is like for you, and someone will listen and react to your problem.

13 Replies

Hi folkmusicilike,

That is good news.

If anyone else has experienced pain after there injections, please see the following link to our factsheet on the subject;

Best wishes

Macular Society

Well done, folkmusicilike! I know it is not easy to speak up when they are so busy. We think and hope they know what they are doing, and mostly they do, but we are all different. What one person tolerates is not necessarily what another person does. So we must tell them if we have a problem, and they usually are very good in making things easier for us as they can.

All the best x

maryparry profile image
maryparry in reply to Ayayay80

It turns out I am allergic to iodine. I would crumple with pain every time...after around 22 injections I have been given an alternative and Thank God! It very nearly stopped me going.

So pleased you got it sorted out xxx

Ah!! The joy of being listened to! I have good news that my wet AMD is a little better. This is after NOT being listened to in the first place by my optician when I reported I could see a "spot" in my left eye. She ignored it: she didn't photograph my retinas. I am a 75 (nearly) old woman. She should have done so routinely even if I hadn't said I had a spot.

However when she eventually did take photographs, upon referral to the eye clinic (hospital), I was seen in 2 days time. I was impressed. I needed an Eylea injection immediately and had one in 3 days time, but had to pay an eye watering £1300+; (for one tiny injection!). Needless to say I was not impressed. I was told I initially needed 3 injections at monthly intervals, and the next 2 would be on the NHS. As WE all know there must be no delay, AND these. injections are vital treatment to stop us losing our sight. Despite this I was put on an "elective" waiting list. This treatment is NOT elective; it is ESSENTIAL! I have written a diatribe to the Trust about this with copies to my GP, MP, Macular Society, and obviously I also involved my consultant and his medical secretary.

I never had a reply from the Trust, but I DID get my second Eylea injection bang on time. RESULT!; and as I've said my sight is marginally improved, (if not my temper and my nerves). I know I've already blogged a bit about this and I apologise for any repetition.

HOWEVER, (sigh), I should be getting my third injection tomorrow (Friday), and I have heard ZILCH! I should get it on Monday at the latest. I go away on Sat. 7/10/17 for a week. The booking team know this as does my consultant and his secretary. The booking team tell me I am "Still on the waiting list". Guess I've not been listened to about "Essential TIME SENSITUVE treatment to save my sight" then!

I have had a long letter about all this published in our local paper, and there was also one already mentioned by other people on this site about a letter published in the Guardian, about how important it is to save the sight of elderly, (and others) with AMD. I have even been interviewed by Jo Macfarlane for the Mail on Sunday about all this, having to pay privately and subsequently fight to get follow up on time with the NHS. (It should be in this Sunday with any luck). The Macular Soc. put her in touch with me, (after asking me first obvs.)

Any advice about "forcing" your NHS people to give you your injections on time would be gratefully recd. Apologies for long blog.

kalahuchi profile image
kalahuchi in reply to fed12

Hi fed12,

I think we're on the same wavelength although I have myopic CNV rather than AMD. Did you know there is soon to be an All Party Parliamentary Group on Eye Health to try and tackle the delays many of us are experiencing? You can have your say via the RNIB website. If you Google "Eye Health APPG RNIB" a link to the survey should pop up - I filled it in and also contacted my MP along with NICE and my local CCG.

Also the Macular Society have raised a petition on behalf of all of us who are suffering sight loss as a result of delayed access to drugs and/or treatment. You can find it on the Macular Society homepage (scroll down to the bottom and there is a link) if you would like to sign. Every signature makes a difference - currently up to 7000 which is wonderful.

I fight for my sight day by day just as you do and well done for raising awareness of this issue in the media. The difference is it's with the full blessing of my consultant who told me never to accept delays of more than a fortnight between finding fluid on my OCT scan and an injections, or for a follow up appointment after an injection. He actually told me I should be "very proactive" in ensuring my appointments are on time.

My MP is also keen to involve the media which is wonderful and we can, hopefully keep up the pressure. Keep battling on x

eyesright profile image
eyesright in reply to fed12

Make a formal complaint to PALS. It's not easy from an emotional standpoint as we know if we get an appt that probably means someone else hasn't but it's a simple email or phone call. I prefer email as you control how your complaint is worded.

JJnan profile image
JJnan in reply to fed12

Hi fed12. i have had to "fight" for an injections more than once after being told there's a 6-8 week backlog, thankfully someone listened and only waited a week, its an anxious time when app gets near and no letter arrives, thank you for making it public and thanks to Macular Society (i have signed) x

RESULT! I have just been rung this a.m. (Fri.), My consultant sometimes does Sat. clinics to ease the waiting list. I have been offered a "cancellation", and will get my 3rd. injection tomorrow. CHEERS! I did resort yesterday to having a long talk with our GP Practice Nurse. She took time to listen to me and my GP then Faxed on my behalf. Last time after my GP got onto the "waiting List" booking clerk it seemed to get me an appointment. Maybe that's the answer. And Yes! It was a comfort to talk to someone who listened!

Well done for persisting in getting your message across and I'm so glad you had a better experience this time around.

Thanks! Whilst there was nothing in Mail on Sunday about (me) paying for treatment to save sight loss, there were 3 scary stories about people paying (big Bucks) for major operations, one for cancer and one for life threatening bursting gall bladder. (Stephen Adams & Jonathan Bucks). I know it's nil to do with sight, but it shows what is happening in the NHS; and it is horrific. I count myself lucky!

Reading the above I want to clarify the article in the Mail on S. was written by these 2 men; it's not the names of the patients.

Hi folkmusicilike, good to hear your you got it sorted x

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