Macular Society

Eylea inj

Hi everyone, i have Eylea inj every 8 weeks but last twice when their due havn't received an appointment. when i ring the up they tell me their running 4-6 weeks behind so i've ring consultants sec and luckily had an app just a week late on both occasions . Anyone else finding this? i find it very worrying every time as i have peripheral sight in one eye and its not stable in other eye. What damage will there be if i have to wait!!

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Hi jjnan, yes I've regularly had to chase for my appts. Both inj and reviews. I don't know if it's because the clinics are swamped or just the admin staff not organized enough - maybe both. (when I started inj the next appt would be given before I left clinic but that girl moved jobs and new one not so on top of things).

You're right about the potential damage of delay and that's why we must not leave things. I give them a week before appt is due then I ring and insist consultant wanted appt and they need to check. So far I have always been given one and only a day or so late.

It's very hard though as don't want to deny someone else but that's for the clinic to manage, we can only advocate for ourselves.

The time between inj is a minimum not maximum but individual circumstances will dictate and my relapses were rapid.

I do think the admin teams aren't told how important timing is as they always seem surprised to be told "I could be blind by the time ive waited another x weeks".

If you find it happening too often there is always PALS to make a formal complaint.

Best of luck x

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Thanks Eyesright i had to fight as it were for March May and July ... due Sept 4th next ill see what happens this time and go from there...i know im not the only one x

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Hi Jjnan,

I am sorry to learn about your appointments delays.

We have had quite a few reports of this of late, largely down to consultants being on holiday.

That said, you should always be seen in a timely manner for your injections and you are quite right to phone your consultant's secretary if you don't receive an appointment in time.

Eyesright is correct when she points out that there may be potential damage caused by delays.

Please call the Macular Society helpline if you encounter further problems and your consultant's secretary can't help. We should be able to offer some assistance.

Best wishes

Macular Society

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Thank you. ill see what happens for next app in Sept ...will let you know x

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I am having this trouble in Macclesfield. It's like banging your head against a brick wall trying to get an appointment. I have already had to pay privately for one injection. Will I have to pay again for next one due 31/8/17? They say they haven't booked up the clinic that far ahead, (seems somewhat tardy); and that there is a 6 week waiting list. So far I have nagged appointments staff, consultant and his secretary. I will let you know what happens. Private Eylea injections cost an eye-watering, (sorry); £1300+!!

I am on the point of involving the Macular Society to fight my corner. I think it is appalling and disgusting the "old"- (I am 74, not even a decade after the legal retirement age, and will probably last another 2 decades)- are left to go blind(er), on a waiting list Talk about "not joined up thinking"! The "old" have enough on their plate require enough of the poor NHS without it having to cope with a blind cohort1

For Gods sake fund enough staff to cope with Eylea injections on time.

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im sorry your having same problem FED12.....very scary at that cost!!!! hope your lucky with app xx

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Fed12, having to pay is appalling! Is there another clinic you can go to? Under the NHS you can choose where you get your care it's called "Any Qualified Provider". Really, your clinic ought to have some kind of arrangement in place if they can't fulfil requirements. But I guess all clinics are overstretched. Funny how it can be fitted in privately - bet it's some of the same nhs people too.

At the very least I would complain to PALS, the hospital chief exec and also the Care Quality Commission. Probably my mp too!

It's so "short sighted" of the govmt and NHS to underfund eye care.

I wish you the very best x

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Yup! I intend to do all that! I am furious; I shall make as much "noise" as I can. Try and get on local TV/papers etc. It would be nice if it would get on national media. I'll keep posting. Thanks for your reply. Yes I have explored changing clinics; might take some time tho' going thro' referral bureaucracy.

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I can understand how furious you must be. It's a worry enough condition without having to jump through hoops. Good luck and please keep posting.

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So sorry about your injections,I thought it was just happening where I live as I couldn't believe my appointment went from 6weeks to 10 weeks as I was needing injection in worse eye every 6weeks I am seeing Vision Express tomorrow if they can check my eyes and see if my eyes are wet ,it will be difficult as I have bad cataracts so hoping they're machine can do it I got scarring on worse eye as I was always trying making appointment and always worrying the better eye could go as not check ,I've also had injections in that one too Thankfully on Macular society on here got me sorted out with a consultant but I think they must be too busy .Very Worrying ,My sister has macular lives in USA and has great care and has injections every 6weeks for 4 years and her consultant explains all about how her eyes are ,she's so lucky to know how her eyes are doing ,She feels so sad how I'm always worry what may happen next Here's hoping our Vision Express will be able to help tomorrow and hope we can all get back to proper appointments as soon as possible ,and take away terrible worry.

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im so sorry Teddi63, have you rung consultants secretary ? Have you tried PALS ? if no joy on either of these ...ring the Macular Society .. dont leave it !!! good luck xx

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Thank you Teddi63. I'm about to "gird my loins" and write a letter to my local paper, about how "crap" the NHS has become. Won't use that word obvs. The more of us; (and not just people with eye and sight trouble); kick up a fuss, the more it'll get noticed, and the more it's likely something will get done. My hero of the hour is Stephen Hawkins. Get your MP, Macular Soc., Cons. and their secretary to get onto whoever organises appointments. Involve the Chief Executive of Trust etc. If this doesn't work, get something in the press. That always works! Good luck!

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I got my appmt. on time; after writing a diatribe to Trust,, copies to cons., MP boking team, as they call themselves, even involved GP. It was v hard work. No doubt my name is mud in Trustland etc. BUT the Macular Soc. who helped enormously were told by booking team they were "organising extra clinics".

It's like pulling hens' teeth getting the NHS to function on time. Am now exploring getting all this in the media. I will keep you posted.

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Well done you! We will all benefit from your brave and determined efforts - a big thank you x

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Well done fed12 ..and Macular Society ....do let us know xxx

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