long waiting list

[JAMESRD]

I was diagnosed with AMR 5 weeks ago and my optician immediately sent a fax to the Sunderland Eye infirmary and so far I have not heard from them, is it a case because of a long waiting list, is this normal ? my vision is getting worse with the wavy lines and distortion. thanks JamesRD

[Macular_1]

Hello James,

If you were referred 5 weeks ago then this is totally unacceptable!

I would recommend that you go in person and present yourself at the Sunderland Eye Infirmary A&E first thing tomorrow morning particularly as you mention your sight is getting worse.

I am certain that you have wet macular degeneration (or similar) which means you should have been seen ideally within 7 days (14 at the outside) for more diagnostic tests. If treatment is then appropriate, this should commence within a further 7 days, (14 days at the outside).

Please see our care guide for wet AMD at the link below;

macularsociety.org/sites/de...

Please call our helpline on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday) if you encounter further problems and delays. I suspect that the fax has not been received or lost as Sunderland are usually very good.

Best wishes

Helpline

Macular Society

[JAMESRD in reply to Macular_1]

the hospital had sent an appointment out on Dec 19th but obviously I did not receive it so they are sending me a new one soon, James

[Ayayay80]

Hello JamesRD

I had to wait 2 months before I got an appointment with an opthalmologist. But my case was different. The optician told me I had dry AMD in both eyes but did not need treatment yet and to come back in a years time for another eye test. I took things into my own hands because I was concerned about my poor vision. As a consequence my GP referred me to the eye clinic where I was found to have wet AMD in my left eye and treatment was given. Whether my condition was worse than the optician had thought in the first place or whether it had progressed so quickly I shall never know. So, indeed, you should be seen by an opthalmologist the sooner the better. Do not wait any longer for an appointment. Sometimes things get LOST IN TRANSIT!

Hope you get it sorted quickly. Do keep in touch with this forum and let us know how you fared. Good luck and all the best.

[Hidden]

Hi James, I agree with what's been said. You need to push and ensure you are seen immediately.

Best of luck to you going forward. The treatments can be very effective . The Macular society are brilliant their website has lots of info and support and this forum helps us feel not so alone dealing with a scary issue.

[JAMESRD in reply to Hidden]

eyes right, I found out yesterday that the hospital had sent a letter on the 19 Dec but I never received it so now they are making an urgent appointment for me. James

[Hidden in reply to JAMESRD]

Once you're in the system you should get tel reminder call. It's an automatic system - one of my letters went missing but the call alerted me. I think all hospitals use it.

[Sukie1903]

I have had a similar problem. I have wet AMD. I knew I had had a bleed a week after being given the all clear after 3 injections of Lucentis. My next appointment was weeks off, so I went to my optician and they requested an earlier appointment. At this appointment they confirmed a bleed, and booked another injection for me. Nothing happened for about 3 weeks, and meanwhile my vision deteriorated. I phoned the hospital and was told they were booked up for another 5 weeks! Then the kind appointments clerk suggested I contact my GP and ask him to get my appointment earlier. To my surprise the next appt was another evaluation - it was as if they didn't believe me. However, on examination, they got me another appt, this time for the injection - YAY!

now 5 weeks later, my sight is better - the blind spot due to scarring is larger!

The moral of my story is if your sight is getting worse - get your GP to demand an earlier appointment. DONT WAIT! I know that the NHS is understaffed, and underfunded, but our sight is too important to neglect.