RE:- Being discharged

[IvyRose2]

Hello, I have had wet AMD in both eyes. Left eye first for about 2 yrs injected age 60 with lucentis and then eyelea. It has remain dry after treatment @ 9yrs. Then my Right eye became wet and I could see the bleeding shadow on the amsler grid. This eye has had more injections and has had cataract surgery when it was dry during pandemic. It was treated with eyelea. Then became wet again for over a year. Its been dry now for about 10 months and a new optometrist is itching to discharge me. I am a retired nurse now aged 72 and have been sent to stable clinic before and had to go back for injections but the wait was so worrying. So for now she has kept me at the wet clinic. As I m very lucky to be still driving I know.

I take macushield and jointace, blueberries, kale etc.

I told her how worried I was about becoming blind as both my parents did become blind. My mum had Charles

Bonnet syndrome and this was worrying to watch.

Has anyone else been discharged after treatment and kept their eye sight intact? Is there any Private Care in the UK?

[springcross]

Hi IvyRose2. I'm sure you won't be discharged unless they are absolutely confident that it's the right thing to do, but you could always contact one of the moderators at the Macular Society via email (their contact details are on the right side of this page under Moderation Team, Contact Us), they will be able to advise you. Good luck.

[IvyRose2 in reply to springcross]

Unfortunately it happened once before the young optometrists sent me to a sta ble clinic and then I had another bleed and had to wait awhile before I got injection, which is scarey. Times have changed a lot since 2011 we used to see an eye doctor and he explained everything to me that even a small amount of fluid could damage the rods and cones and act as a reservoir for more fluid. He was so thorough showed and explained my scans to me. I was indeed very lucky. Saved my eyesight.Also they wait for vision to decline to a certain standard before they start treatment now too.

It's understandable I suppose because the clinics are inundated. Our eye consultants are brilliant though in Gloucester and made sure I had regular injections when you see them. The nurse practitioners too, seem to have dissapeared..

It's a good idea someone suggested having scans at the optitions,but these arnt as good as the hospital scanners which even measure the fluid. But better than not ha ing a scan at all. I have them at my yrly eyetest.

What happened about the eyedrops i wonder for this condition.

Is there anyone on this thread who has stopped eye injections successfully

For a long period.?

[Salcombe]

Discharging patients under these conditions appear to be the new policy, as I and others are fighting being discharged. I suggest it is to save money, because if they pass us on to opticians to diagnose it is cheaper for the NHS. This will be disastrous as not all opticians have the equipment, or the skill, and they are not always listened to themselves. I had to return to the optician twice before her referral was acted upon.

We need a campaign to stop this.

[RosMacularSociety Partner]

Dear IvyRose2,

If they do discharge you from the eye clinic, then ensure that you check an Amsler grid on a weekly basis. If you do see any sudden changes in vision, then either get an urgent appointment at an opticians for an OCT scan, or attend a hospital emergency eye clinic. If the opticians sees any signs of active wet AMD, then they can fast track you back to the eye clinic for another urgent injection.

It is also important to routinely go to the opticians on an annual basis, ideally for an OCT scan, so that they can look at the general health of your eye.

Kind regards,

Macular Society Helpline

0300 3030 111

[e-mail]

[Salcombe in reply to RosMacularSociety]

This has not been my experience. I kept going back for two years, and was told that it was the natural deterioration of the condition, even though there was fluid behind the eye. It took an optician to refer me again to my GP before I got treatment. Please listen to your members.

[candour in reply to RosMacularSociety]

From my own experience some opticians do not want to know. I told an optometrist that I had dry md and she asked me why I was there I said for an eye test and she reluctantly gave me an eye test. I think there should be some sort of data base on opticians that will be willing to give you an eye test if you have dry md and which optometrists are willing to see you urgently if you notice any change in your vision.

[Catseyes235 in reply to candour]

Yes we need to have reviews to read! I’ve had good and bad experiences at high street opticians but the optometrists usually good.

[candour in reply to Catseyes235]

which opticians are these optometrists based you are referring to pls

[IvyRose2 in reply to RosMacularSociety]

Thanks Rosalyn

[fed13 in reply to RosMacularSociety]

I liked the above comment from the Mac. Soc., but when I clicked on the heart it went back to zero! Fortunately I could restore the like already there.

[fed13]

Opticians vary enormously! Our very good optician retired and unfortunately was replaced by an incompetent rude young woman. It wasn't only me who found her thus. She failed to pick up on my wet AMD despite my telling her of the difficulty I was having with that eye. But all is well now. I had to go private at what seemed to me enormous cost initially, but with nagging and not taking no for an answer, and with the help of the Mac. society I got into an NHS clinic for ongoing care. Phew!! What a battle!

[Shimano]

dear Ivyrose, find a good optician and get scan every month or so. £10/15 a scan. If your wet recurs she should refer you directly to the eye clinic. It’s worth it for peace of mind. all the best to you.

[RosMacularSociety Partner]

Dear IvyRose2,

The following guidance may be useful to quote to the eye clinic. nAMD is referring to wet AMD:

rcophth.ac.uk/wp-content/up...

The Royal College of Ophthalmologists

Commissioning Guidance

Age Related Macular Degeneration Services: Recommendations

Date of Publication: May 2024

Date of Review: May 2025

10.3 Treatment regimen

5. nAMD is a lifelong disease and approximately 25-30% can reactivate and so the patients can very rarely be discharged from monitoring unless disease has been stable without requiring injections for at least two years.

10.4 Stability

Stable disease is defined clinically as 2-3 visits at maximal extension based on posology of the drug used (12 or 16 weeks) with dry retina and stable VA. However, this is subject to clinician discretion and varies with individual patient. After a treatment free monitoring interval of 12 months 25-30% of patients will still reactivate and need to restart treatment in the subsequent 12 months of further monitoring. Self-monitoring using Amsler chart is not a sensitive tool. Home monitoring devices utilising visual function is not sensitive. Meanwhile, OCT is the only sensitive monitoring tool for assessing reactivation.

Kind regards,

Macular Society Helpline

0300 3030 111

[e-mail]

[IvyRose2 in reply to RosMacularSociety]

Thankyou so much Rosalyn that is really helpful.