No appointments!

[maryparry]

I lost a lot of sight last year when my appointment was unforthcoming for 12 weeks. Last visit, the doc. said it is very important not to go beyond 6 weeks...here I am, six weeks on, and no appointments available. What can I do? I feel desperate.

[Koalajane]

that is awful. All through Covid my injections carried on as usual.

Have you tried ringing the Consultants secretary because it helped me once. Also you could contact the Macular Society for help and advice.

I hope you get sorted wuickly

[springcross]

Hi maryparry, that really is awful - I thought mine were bad but they were nowhere near as long as yours except for one occasion, I had to wait ten weeks but it all had an effect on the sight in my eye over a few years! I agree with Koalajane and I would contact the consultants secretary, as she has said and explain what has been going on and how it's affected your eyesight, or you could contact the Macular Society for advice (on 0300 3030 111) or failing that, contact PALS at your hospital and complain. Good luck whichever you decide to do, no-one should be left that long and we shouldn't have to advocate for ourselves either, that's the job of the clinic staff! Please let us know how you get on.

[Penelopeflower]

Hello maryparry, as others have said this is not acceptable, do contact the consultant's secretary as a matter of urgency, you obviously need injections more frequently, in time if things improve the gap between injections should increase, mine are now three monthly as my vision has improved but in your case the six weekly ones are obviously essential, a firm approach is required, and of course the advice from the Macular Society always of benefit. Best wishes.

[Shimano]

having more or less the same situation myself I really hear your desperation. The advice from springcross and kogalane is very sound. I’m afraid the only solution is to make your voice heard in any way you can. It’s very difficult if you are naturally a person who hates making a fuss. It’s even worse when it happens for nearly every appointment. Knowing your eyesight is suffering is very stressful. Is there a family member who could phone on your behalf? It’s hard to phone yourself when you are stressed and emotional. As suggested by others, the macular society are a great source of advice and support. Hope to hear better news from you soon. Good luck.

[fed13]

Get the Press involved. It works! I think all of us have come across this "No appointments......lack of capacity!" It is truly shocking, disgraceful and unacceptable! The Macular Society now have an advocacy agent, so get them involved too. Good luck! Tell us how you get on....sending you a hug...xx. I deeply sympathise!

[ChesterfieldChap]

Last time I went to the eye unit I was to be seen again in 6 weeks and about 9 months on I'm still waiting.

[maryparry]

[JJnan]

Hi Marryparry, as others have said, the consultantt's sec is your first person to call, none of us like complaining, but your eyesight is important and i necer understand why they keep people waiting when they should be seen in a set time, i had same problem few yrs ago, injrections were stopped in one eye due to scarring, so with 1 goodish eye, i rang and explained and got earlier apps, now on the priority list, so please ring up and tell them your concern/ anxiety , goid luck x

[Rosalyn-helpline Partner]

Dear maryparry,

Have you tried contacting your ophthalmologist via their secretary with your concerns?

If there is an Eye Clinic Liaison Officer (ECLO) based at your eye clinic, then it is also worth contacting them to see if they can assist in getting you a rapid appointment.

If these two routes do not work, then please contact us regarding advocacy. We can contact the eye clinic on your behalf.

The Macular Society Advice and Information Service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

Macular Society Advice and Information Service

[ElviraKate]

I have a similar problem here in Edinburgh, but the situation is dire, they simply have not got the nurses or the opthalmologists to deal with the numbers of referrals. I do make a fuss now and then, but it rarely makes any difference. With luck I will get to see a consultant next month, when I can get a clearer idea of prognosis and treatment ongoing, but it will be the first time in a year that I've seen someone I can talk to. I regret not being able to go to Moorfields as I did before I moved up here last year - they are so much better funded and staffed - but there's nothing to be done about it. I have even said to the poor appointments staff - so we just go blind, then? And they can't deny it.

[maryparry in reply to ElviraKate]

isn't it desperate? I have been in touch with eclo and secretary as advised by the society but nothing doing.

[Stoneferry8]

how do find your consultant’s secretary number?

[maryparry in reply to Stoneferry8]

I went to the echo and she got in touch for me.x

[Stoneferry8 in reply to maryparry]

could you explain the echo to me? Please.

[maryparry in reply to Stoneferry8]

eye clinic liaison officer.

[Op_ra in reply to Stoneferry8]

Stoneferry8 If I or my husband have to ring a consultant’s secretary, I just ring the hospital switchboard and ask to speak to Mr/Mrs/Ms So and so’s secretary. Always works for us. If they are not in the office, just leave a message and mostly they will ring back. Occasionally we have to repeat the process, but in general, it’s quite easy and they are usually extremely helpful.

[Catseyes235]

it seems to be a postcode lottery. I never leave the eye unit without having my next appointment made. What does your doctor say about this? Write to the hospital board as if no one complains nothing changes.

[maryparry in reply to Catseyes235]

It just doesn't happen at my hospital. I hardly like to trouble my overworked GP ab out it but, luckily, the wonderful Mac.Soc. have sorted it.

[Magsofkent]

that is dreadful I’m

Every four weeks the past 3 years or so there is no way can go longer. Once I did and it got worse rapidly get in touch with the Macular Society.

[Donaldduck31]

I’m in this exact position , so frustrating. Last injection they said we will try to stretch to 8 weeks max , it’s now been 9 weeks and still no appointment. Just scared my sight will suffer 😢

[maryparry]

where are you in the U.K.? I know how busy they are but I am so scared.

[roynett]

Hello everyone, apart from the dreaded eye disease I hope you are all well, this rotten AMD is bad enough, but when you are having appointment issues It must be very worrying, I will be having my injections (both eyes) tomorrow, I really hate it, but I am too scared to stop them. luckily I never have any issues with appointments, I am handed my next visit as I leave the injecting room, I vary from 8 weeks to 10 weeks, I wish I knew why these injections take years to work. Anyway, all keep safe. x