Macular Society
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Worried about Overdue eye injections

I am so worried about how late my next eye injections are. My last injection was on the10th April but recently my appointments are becoming later and later. They told me on the 10th April that my next appointment would be in four weeks but when I telephoned the appointment office at Solihull Hospital they said they were looking at the 18 June which would be 10weeks between appointments which is six weeks late. I am worried that my sight will suffer badly. I have tried everything I can but they can’t tell me anything for certain, my life is on hold at the moment I can’t plan anything. The NHS is letting me down. I have wet AMD in both eyes and have had 22 injections in each eye and my sight is still reasonable at the moment. I have considered going private but at between £1100 to £2300 per injection plus approximately £200 consultation fee it is very expensive. The Macular Society have been very helpfull and have email my consultant mut to no avail. I don’t know what to do I’m at the end of my tether. Does anyone have any suggestions I would be very great full of any advice.

Regards

Paul Wharton.

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Hi Paul

I quite understand your concern. For what it is worth, I am in a similar position where I do not know when the next appointment will come. As you say, it is difficult to plan ahead, which is disconcerting, say the least. Taking an educated guess, I have booked a holiday abroad, and now find it is very likely to interfere with my next appointment.

During the past year or so, it seems that the intervals between injections have been stretched out more and more, in my case up to 2 months. I suppose they only do that when the condition is reasonably stable. Have you tried to contact your consultant's secretary? I hope you get it sorted soon.

Best wishes

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Dear ayayay,

Please ring us on the Macular Society helpline for further discussion.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

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Hi Paul,

Is the NHS your only option other than private? Ask more questions when staff is taking tests of your eyes to be aware of status of your fluid build up.

Don’t despair, if your vision is stable, perhaps you do not require more frequent injections.

I require every four weeks and I look forward to the day when Dr says, “see you in eight weeks!”

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Thanks all for the reply’s my injections were up to 12 weeks but have slowly come down too 4 weeks I have tried every possible thing I can do but it seems that the NHS are under pressure at the moment. I phone almost every day but nothing’s improving. I have tried to get a cancellation as I only live 15 minutes from the Hospital but as yet nothing. The hospital staff are lovely and are trying there best but they can’t really do much more. I have spoke to another Hospital that is about a 40 min drive who say they can do them in two weeks but need a referral. My own GP has now referred me so I will see where that takes me. I am having Eylea injections does anyone on this forum have Lucetin injections and are they as good as Eylea?

Paul

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Does your amsler grid show change? If so go to the eye dept. emergency department.

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Hi Melene, sorry I never replied to you directly. Did you have an idea of what other options there are available?

Regards

Paul

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Hi Paul,

In the U.S. my personnel insurance company pays for one injection every four weeks, if I needed more it would come out of pocket, $3000.00.

You have Socialized medicin, and unfortunately, forced to wait. If the hospital forty minutes away can commit to a regular schedule by all means go, though it must mean depending on a driver.

My injections are working to save my eye sight, and if you want to know which brand I am receiving, just ask.

Looking at the grid doesn't necessarily reflect the fluid in your eye. Ask your provider if the fluid build up is the same or more than your last visit.

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Hi Melane, fortunately I have a driver (my wife) so what brand are you on? I have been on Eylea right from the start and mine also are maintaining my sight. So do you have to pay for the remainder that your insurance doesn’t fund?

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Hi,

My Doc uses ranibizumab,0.1 mg.

Dr numbs my eye twice, roughly 5-10 minutes apart, I feel nothing but the pressure when he injects.

I must remind him not to hit a capillary!

Fortunately, I only need one shot a month (even that is too much as far as I'm concerned) and don't have to worry about out of pocket yet. I'm going on two years.

~ Melene

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Dear Paul,

Please ring us for further discussion. I am awaiting a response my end.

Kind regards,

Rosalyn

Macular Society helpline

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Hi Paul, I was going to suggest you try the NHS " any qualified provider" route but I see from your reply to melene that you are already doing this. Hopefully that will work out for you.

If for any reason it doesn't then, if my sight was ok ( checking with the amsler and what I could see ) I wouldn't panic but if I felt things were worsening then I would first complain via PALS explaining the urgency and if sight really bad go direct to a&e.

I started on Lucentis then moved to eyelea. Same kind of result for me ( I have brvo).

Good luck going forward.

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This seems to be getting the norm in the NHS; My first injection was a week after assessment, the second 5 weeks after that and the third is due next week after a gap of 8 weeks. All after being told at the assessment that they would be 4 weeks apart. Luckily I have a mild wet AMD in one eye and it doesn't seem to change much so I guess those who have the condition mildly are being stretched in terms of waiting periods.

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Yes!! I have had this stonewalling from NHS bookings and consultants secretary! Initially I had to go private, but was promised follow up on NHS in 4 weeks. IMPOSSIBLE!! However what worked was writing a stiff letter to the trust, (Macclesfield), with copies to my GP, MP, and Macular Society. It worked. In my case, and hopefully it helped others too, I got my appointment on time. More clinics were organise.

Then it happened again. Rosalyn, Macular Society helpline, (see above), rescued me! I got my appointment on time. I just hope others like you, Paul, make as much fuss as I do/did! I have little doubt my name is mud in Macclesfield, but if all of us demand appointments on time things can only improve! Try and get a letter in the local paper; I have a high opinion of the power of the press.

All the best Paul. I cannot understand the mind-set of the NHS that thinks it can let its aging population, (as they're always saying), "go blind on waiting lists", rather than treating us efficiently; which would save money in the long run!! It's so blindingly obvious, (ooops sorry).

So try Rosalyn, MP & GP. Make a fuss!!!!!!!!!!!!!!!!!!! Get something in the local paper, or even the tabloids/broadsheets. I so identify with your difficulty.

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Hi, thank you for your comments. I am trying to put pressure on where I can Ros from the Macular Society has been helping for sometime and she phoned me this morning as she is waiting for a reply from the chief executive of the MS who is now on the case. I have got my own GP to refer me to a different hospital whom I have spoken to and are not under such pressure and say they are not having the problems my own hospital are experiencing. They can do my injections. I am waiting for an appointment to come through. I’m just not sure what to do now if an appointment comes through from my local hospital. I am starting to think I might be better to change hospitals as mine is under so much pressure!! I will keep this forum informed of my outcome.

Regards

Paul

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I forgot to say get onto PALS. They are very good too! I wish you the very best. Tell us what happens, please.

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Sorry I forgot to mention I am waiting for PALS to come back to me. Soon as anything happens I will post on this forum.

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Hi Paul

Sorry to hear of your issues. I think I have read you are on Eylea.,This drug unlike other ant- veg -f can last quite a long time in your eye compared to avastin and lucentis and therefore for some the wait in between may not be so detrimental as it would be for the other drugs. Hope you have a good response from PALS . I am being treated aggressively with Eylea as they are trying to preserve the vision in my one seeing eye ( central vision anyhow) my hospital lets me book 2 months in advance so always have injections every 4 weeks. So I have appointments for June and July already booked.

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Hi Tallyho,

Thank you for that but what is worrying me is that they have been scanning my eyes every time I go for my injections and base my next appointment on what they find in the scan. On my last appointment they told me your next appointment would be in four weeks and wrote to me confirming that but when I phone up they tell me it would be 18th June which would be 10weeks between injections and that is because they are so behind with everyone. Obviously I’m worried because it seems too long and my sight is going to suffer.

Sorry to hear you have lost the sight in one of your eyes is that because of MD?

Regards

Paul

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No I have type 1 diabetes so it is a complication of that (DMO similar to AMD),I also have cateracts, OH, ptosis and double vision and am under 4 eye consultants and 2 hospitals for my eyes so can really appreciate your worries.

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So sorry to hear all that let’s just hope they can manage to keep your remaining vision. Good luck I hope all goes well for you.

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🙏🙏🙏

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I suggest you go to A & E saying you are in pain and your eyesight is effected. let them in A & E examine your eye then very politely ask them to refer you for further investigation.

that is all you have to try no more details to be given. BEST OF LUCK.

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