Hi,
Have had injection cancelled and new appt will mean six months, rather than 8 weeks, between my injections. Can't get answers from Moorfields (ST Georges) re whether they (who are closing) will allow injection somewhere else if sight starts to fail Have had BVRO for 4 years and lose a little sight each time interval is too long.Can you help people in this situation- totally understand shut down and risks but feel there should be plan for if sight deteriorates Thank you
Hi there - just like you i have had my appointment cancelled at Moorefields in St.Georges - Tooting - SW17. - This is the second time it has been cancelled in a month and i so need eye drops as my eyes are very sore and streaming. When they rang to cancel this morning they also gave me a number for the nurses so i could ring them and ask about my eye drops - but they do not answer. I am in self isolation as i have not been to great and did not want to go out with this virus raging all around everyone. Who knows now when iot will be safe to go to the hospital - i do hope that you will be okay until you can go again. Keep safe and well.
Hi,
Do keep trying the number for the nurse- I tried without success this morning and then managed to get through this afternoon,
Take care and stay well
Hi there - thank you for the reply. Yes i have managed to get through - just put the phone down - but they have are sending a script for drops i cannot use - even when i see the eye doctor at Moorefields - he gives drops that make my eyes worse - so i just give up now. Good luck for the future and keep well xx
Do you know the name of eye drops that HAVE worked for you? Could you ask for those?
Hi rosyG
The latest information we have been given from Moorfields hospital is that most sites are closed and essential injections will be carried out at alternative locations, to be determined. Consultants are reviewing all patients carefully and individually and will be in touch with everyone with a plan going forward. This seems to be the same for all clinics nationwide - certainly those I have spoken to in the past 10 days or so have said exactly the same.
Our standard Advocacy process is somewhat suspended during this time. In "normal" circumstances - we would be advocating for treatment to be given in a timely fashion, but we are now governed by the pandemic and the changes that are taking place daily.
As you can all imagine, the bulk of our calls and enquiries are from people who have said that their clinics are closed or have assumed that they are closed. Not so, so far! We encourage people to speak with their Consultants via the secretaries to determine their own individual plans going forward.
All the clinics I have spoken with have advised that they are open for essential injections, as deemed appropriate by the individuals' Consultant, and those hospitals with an emergency eye clinic will remain open for people experiencing sudden changes to their sight. All routine appointments, scans etc are likely to be cancelled.
The number we have been given for Moorfields queries on this matter is 020 7566 2357
- you would need to keep persevering as they are experiencing high levels of calls at the moment of course, as is the case with all clinics. I'm generally calling clinics first thing in the morning, and with many of the clinics I have had a response straight away.
We absolutely understand the worry and frustration that this is causing and of course are happy to help and advise where we can. Do try to speak to your Consultant via the secretary to start. In some circumstances, Eye Clinic Liaison Officers may be able to help. Or call the clinic directly with any concerns.
Best of luck
Su
A&I
Macular Society
0300 30 30 111
help@macularsociety.org
Hi Su. Was one of the clinics you contacted the Bristol Eye Hospital by any chance?
Hi - no, Bristol haven’t been contacted yet. I can ask Becky or Ros to give them a call to find out their plans tomorrow and post accordingly. Hang on in there.
S
Many thanks Su. x
Hi Su. Any news yet?
Hi - Apologies for the delay
I have just spoken to Bristol Eye Hospital ECLO. She assures me that all injection appointments are going ahead, along the same lines as other clinics. Consultants are reviewing patients on a daily basis and will be in touch with everyone. It could be that venues are changed - but this is changing all the time and they will of course keep people informed.
This is certainly standard of all the clinics I have spoken to so far as well.
Hope this helps!
Su
A&I
Macular Society
0300 30 30 111
Hi Su. Many thanks for that. I had a letter this morning giving me an appointment which will be exactly eight weeks from my last one on April 2, which will be at my usual clinic and not at Bristol (which I am pleased about). They did tell me though on Thursday that the eight weeks no longer applies and that it will be a minimum of eight weeks so I am hoping that this will not be cancelled and I am still concerned about any possible leakage which seems to happen now between 5-6 weeks so will have to play it by ear. Thanks again Su, much appreciated. x
Hi Su
This is not the case for Moorfields . I ‘m at at the ST George’s branch and should have had an injection next week. I have to wait for six months. I have been in touch with people every day from last week and have managed to get the email of the dr responsible fir me. Please could you look into moorfields as the royal college guidance issued on 30 th March says bvro should be reviewed after 4 months during pandemic. That’s bad enough as I’m supposed to be having an eight week interval. But better 4 months than 6 months. Be grateful for any help please
Hi rosyG
I have made a call to Moorfields Medical Retina Helpline. This is answered by a Retinal Specialist, telephone number 0207 566 2472.
She advised that BRVO patients who attend Moorfields have been deemed to be at lower risk and therefore the 6 month appointment time is currently “standard”. However, as we are all governed by the pandemic, and the ever changing situation daily – she advises anyone with this length of appointment time to call and report any changes or to attend the emergency clinic. At the moment, people are cancelling appointments, so I was given the impression that due to so many cancellations, it should in theory be easier to secure an earlier appointment if necessary.
She was very happy for people to have the number above to address any concerns.
It is not possible for us to employ our standard Advocacy processes in these difficult times – we can only encourage people to call the clinics themselves and not to accept the length of appointment times as a given – I would like to think that we have magical powers in so called “normal circumstances” - to Advocate for people to have timely appointments, but sadly this has changed due to the pandemic.
First port of call will always be the Consultant via the Secretary. Emailing is good, but follow up with a telephone call within 24 hours. The clinics I have spoken to have been amazing – we are calling the same numbers as everyone else has – we don’t hold any special numbers to get through faster! The longest I have waited on the phone is just under 20 minutes. Certainly the Medical Retina line answered within 3 rings.
Hope this helps. Good luck to all – and – keep going!
Su
A&I
Macular Society
0300 30 30 111
Thank you for your help Su. The hotline yesterday gave me my doctors e mail and she has responded by getting the clinic to ring me with an appt for four months time - which is what the royal colleges are advising during the pandemic. This still means a delay if two months but I think six months would have let to permanent damage in my particular case so am very grateful to get a four month appt.
I was told last week that after my injection today, my next one (instead of being five weeks) would be eight weeks. I have wet amd and I usually get leakage after five or six weeks. This morning at the hospital when I queried it, I was told by the doctor that all has changed again and it would be a minimum of eight weeks and could be much longer. They don't know what is going to happen with this Covid-19, whether there will be any nurses or doctors available due to them becoming ill. I was advised that only emergencies will be seen and if I get any problems such as bleeding, pain, hemorrhage etc to ring the emergency number and they will decide if it's urgent enough for me to be seen. I also understand shut down and risks but, as you say, there should be a plan for if sight deteriorates.
I always have some sight loss of interval us too long and it had been reduced to 8 weeks after last one in Feb. New appointment at end August means it will be six months!! I’m hoping when I get symptoms I can get injection at that point. Quite stressful on top of all other things at present
I couldn't agree more. x
Rosyg please do push if you start to get problems, don't risk more damage x
From the number of people who were told no then got an inj after ringing up I think some of these clinics are in fact working on that principle, that folk will 'shout' and effectively do the triage for them!
thank you- I am still trying to get clarity but if nothing wrks I will ask my GP to help- reluctant as everyone is so busy bunted to know what to do when sight deteriorates - which it will as never been able to get past 10 weeks in 4 years and supposed to be 8 this time- not 6 months!
Oh I feel so much for you x and everyone else in the same situation. Maybe we all need to be writing to our mp/ Boris???
Hi all, worrying times indeed and my thoughts are with all of you.
However, imagine all those poor eye staff from Moorfields having to work at the Nightingale hospital. They will be so out of their comfort zone, but they will be on that frontline saving lives and giving comfort to the dying.
Our department has been phoning all patients, those with RVO if vision is stable defering them -any probs to call.
To be honest most people don't want to leave their homes at the moment and that includes AMD pts who are declining appointments or not turning up for injections.
Strange times indeed, stay safe.
Hi Wheezl
We understand the need to postpone but the problem has been lack of information re who to contact when our injections are needed urgently . Stress levels are very high fir lots of reasons and to add potential sight loss is very hard. I hope Moorfiekds staff are receiving any extra training needed before being redeployed As ex nhs myself I’m amazed they’re even considering using retired staff as much higher risk group
I presume you would phone the clinic administration staff, if you have a significant drop in vision.
They are closed. I managed to speak to a nurse on the advice line ( took several hours to get through) who said go to opticians who will then get in touch with them. My opticians are completely closed so that won’t work.
I’m going to go back to them and ask fir numbers to ring when time comes
I'm so sorry to you and others who have cancelled apps, it's very worrying for you, I agree with others, ring consultants sec with your concern.
Although their contacting people on an individual assessment, I would still ring. ....as an afterthought, I was using Viscotears for 3 yrs but found my eyes still very sore last couple months, eye clinic gave me prescription for
Hylo forte eyedrops, I've found them quite good so far, I get pain trying to open eyes first thing in morning so I tried Boots eye mist, you can also get Optrex one, the difference it makes is wonderful, I then use hylo 3or 4 times daily ...thought it might help if you have this problem ...good luck x
I bought Hylo Forte and I find it very good. I was using Hylo Tear and although they were good, the HF are better in my opinion.
Hi there - yes i think Hylo Forte are the best one's that i have tried and when i can get out again i will get some - i have to have preservative free and the other one i use is Thealoz Duo - preservative free - take care - best wishes.
Yes, I always look for preservative free. We regard to the Thealoz Duo, I used that for quite a while but had to stop because I found the bottle so difficult to squeeze as I have osteoarthritis in my thumb joint and squeezing the bottle was extremely difficult and painful for me. xx
Hi there - yes it can be very painful as i too have osteoarthritis and fibromyalgia - i am looking to see if i can find anything to help to help with administering the drops - i know there are things out there somewhere - if i find anything then i will let you know. Thank you for the input - take care.
Hi there - thank you for the suggestion - i will give them a try - i will definately get the Hylo again as i think they are quite good - bless you and keep well.
Hi there - i have had a text this morning from Moorefields stating that i am now under the care of the GP and they they will be looking after my eyes from now on (i think not) i do not trust any doctors - i will buy my own eye drops and save up and try to go private - i hate going to that clinic at Moorfields as the wait is so long and costs a fortune in taxi cabs. Good luck with your eyes - i wish you a speedy recovery. Blessings.
I'm really sorry to hear that, what a worry for you. I hope you get on OK. With regard to getting out for the Hylo Forte drops, I got mine from Amazon cheaper than the pharmacists around here. All the very best to you. xx
Thank you for the good wishes - i wish you well - keep safe - blessings.
You keep safe too. xx
Wow I'm in the United States
I just received my Eylea injection. the office is only opened for eye injections. Very limited staff and only 1 doctor. Any eye exams, cataract surgery other issues are postponed until the virus subsides. My doctor wants to keep his patients on schedule. My temperature was taken before I even checked in & I was questioned about my possible symptoms .
Macular 
High myopia and the macular
Myopic macular degeneration 
Oh the pain of macular injections 
