For the last three years, I could only be seen by the Glaucoma specialist nurses, I really don't mind if I can see my consultant sometimes, but seem like I have always been seen by the nurses.
Has anyone got the experience like me? much appreciate for your reply.
And I really don't know who is my consultant now, so it is difficult for me to find out the consultant's secretary's telephone number.
Thank you, Totthi
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Totthi
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For many years I never saw a consultant, usually seen by an optometrist, but going through all the issues I had a, few years ago the optometrist went to clinic to confirm he had the right treatment plan for me, he did, consultant decided to take on my case, the one I was registered under does a lot of teaching, the new one had no people skills and I hated her, eventually got a couple of appts with original consultant, looked at my left eye, can't put the actual word he used but he said it's well and truly £&_-/=) ((#@&_ up, I've now found out he's retired and I have no idea, who my new consultant is.
Can I ask how do you feel about not being seen by the consultant? I feel really anxious, because I have always been seen by the glaucoma specialist nurses only.
And I really don't understand the £&-/=) ((#@&-up??? could you kindly explain it to me, please as my English is not really great .Thank you.
Firstly the consultant said a naughty word in relation to the state of my eye, if I put the actual word our Admin team would delete my reply. With regard to not seeing a consultant it doesn't bother me, I was born with glaucoma and been attending the hospital for most of my life, I'm now aged 59 yrs. And I know if I had a problem I'd quickly be seen by a consultant, hope this helps
Yes , I also saw different nurses and Doctors for years before I saw my consultant.
Perhaps if you phone the opthalmic outpatients medical secretary...(.whichever one), they will access your notes and let you know with which consultant you are registered.
Also whoever you see at the hospital should be able to tell you,
In theory it seems that each consultant usually has their own team of medics, but of course they often only come for a limited time to gain experience.
I have found it quiet helpful to chat to other patients in the waiting room if possible about the different staff. Also your local optometrist may have some idea about the hospital set up.
These days because they are so busy you may have to try a few times, but I found that once I could understand "the system" a bit then I felt much better.
It's a difficult problem because these days one seems to be under the care of a 'team' rather than a named consultant. There are only two glaucoma consultants in my local hospital...not nearly enough it seems to me to cope with the sheer numbers of patients. There is a glaucoma department secretary whose name you can find from the hospital website. Are you sure they are nurses you are seeing?.... I am often seen by an optometrist but they frequently liaise with the consultant at the time even though I may not see him/her face to face.
I did have to make a complaint last year about the cancellation of a procedure and on that occasion I emailed the glaucoma department.... the address was on the hospital website.... and got an immediate response.
Perhaps an email explaining your anxieties might help you.
Thank you stones93 for replying.Yes, I'm sure I have been seen by the specialist nurses, because they have name badges.
I forgot to mention when I was in the hospital, several times I could see the consultants but they had seen other patients, but not me.
Sometimes after the specialist nurse had seen me, she would come to ask the consultant for advice on what to do with me.
I think I'm going to email the glaucoma department about my anxieties .
Thank you so much for your help.
Hi I have had major problems caused by not being able to see a consultant. I have been given one eye drops which are not needed as I am having other form of treatment & this would interfere with my treatment plan. However I am fortunate that I was able to look these up & not take them. I never see a consultant only nurses. This has also caused me to be prescribed eye drop that I am known to have allergies to. It's all caused by no consultant reading your in particular if you are attending different clinics. You see no consultant they are not physical there too listen to you or read file this causes major problems. I have my reviews at Hoxton every 3 months. I dread it as I know problems will happen with wrong eye drops
Thank you Catsrule1 for your reply.Yes, I think there is a big problem for patients like us, I'm very anxious about not seeing a consultant for such a long time.
It has caused the wrong eye drops being prescribed each time. This results in having to go after each visit to get them to prescribe the right eye drops or my GP will give me the ones allergic to
If you want to know who your consultant is, ask your GP. They will receive a letter from the clinic every time you attend so will know the name. I always receive a copy of the notes from my appointments too which I keep as a record of who I have seen and the treatments/medications I have had. This problem you mention is a big one for many people. Glaucoma is a complex condition and continuity of care is vital. I believe that many of the problems people have are a result of lack of continuity of care. After 18 years of NHS treatment I have opted for private care (by my excellent NHS consultant) because I have lost vision and the lack of continuity was frightening me. Its very expensive but we will do without other things to preserve my vision.
Thank you Longwalks3 for your reply.Yes, about two years ago I had a consultant, but I have had only seen the specialist nurse since then.
I have to say I'm very anxious not to see a consultant for such a long time, I was thinking of seeing a private consultant but unfortunately, I'm a pensioner not able to afford it.
Hi TOTTHII! Long reply but hope it helps! As Muddledme has said the consultant is usually supported by a team of trainee doctors who see patients.Prior to COVID I would say that how often you saw the actual consultant depended very much on how your glaucoma was or wasn’t progressing. So for some comparison my hospital I think only has one, maybe two, specialist glaucoma consultants/surgeons and a large amount of patients. I have glaucoma that is progressing faster than average, IOPS that are not ideal , I already have sight loss and I’m on a medical license for driving (which adds some jeopardy as they want to keep me driving). I saw the consultant once in July 2018 after diagnosis and 18 mths later in Oct 2019. The rest of the time I saw one of my consultants team of doctors.
During lockdown 2020-2021 I have been seen in Sept 20 and then June 21 by nurses only in virtual clinics. My consultant has reviewed the test results and written to me to say you’re ok after the first check and then your glaucoma is progressing after second clinic checks.
Whether I’m seen by my consultants team or the virtual clinic I always receive a copy of the letter sent to my doctor. The letter is written by my consultant or by the doctor doing the operation (I had SLT at the end of last year) and has their contact details or that of the secretary. It sounds like you were diagnosed during or early in covid so unless you are progressing or they have concerns you may not see a consultant. My advice is find those letters and call the secretary if you have concerns. 👍🏻 Good luck!
Hello Beecalmed.Thank you so much for the long lovely letter.
I was diagnosed in 2017, already had lasers, surgeries for cataracts on both eyes, but lost some vision in my right eye and it getting worst.
I discovered there was a grey shadow that covered about 20% of my top right eye in late 2020 and it keeps on progressing, now it's covering about 60%o of my right eye, so I can only see about 40% in my lower eye. So naturally, I'm worrying, but every time I have seen the specialist nurses, I had always mentioned it to them, but seem like they ignored it.
So I really would love to see a consultant, but don't know how to.
Every time when I was in the hospital, I could see the consultants were there but they had seen other patients but not me.
Yes I agree with you, that grey shadow would concern me too! I think you have a very good reason to contact the hospital directly. First question: are you in the UK? My advice may not be appropriate if you’re not with the NHS.
Second thing , have you received letters from the hospital after the virtual clinics? That will give you a consultant name and a secretary to contact.
If you haven’t received a letter after your checks, which sounds a little irregular to me, then either contact your GP and request the consultant name and contact or just ring the hospital and ask for the ophthalmology department. Your letter will also have your patient number on which helps speed them finding your medical file.
Whatever you do just call someone today or email or write. If you are not great with the internet you could try Glaucoma Uk as they may be able to suggest someone to help you with the internet or can find hospital department contact numbers for your hospital. You are right to want answers to what the grey shadow is. Let me know how you get on!
Hello Beecalmer.Yes, I'm in the Uk, and I'm an NHS patient.
I'm sorry I don't understand the virtual clinic, what is it? could you kindly explain it to me, please?
Yes, after every appointment, I can see there is a name of the specialist nurse who had seen me only.
I have just sent an email to the glaucoma department which I'm with, asking if I can see a consultant on my next appointment, which is due sometime this May, but I still haven't got the confirmation yet.
So hopefully if I can see a consultant.
Again, thank you so much for your kindness and may I ask: Are you in the UK?
Yes, I’m in the Uk too and I am an NHS patient. So a virtual clinic is something my hospital ran during lockdown and are still running. All it means is that you are called for your appointment but you don’t see a doctor. Instead nurses do a field test, a visual acuity test and any other test the consultant has requested. The nurses will take bake questions to the consultant too. The consultant then looks at the tests and scan results and decides what course of action is needed. The virtual bit is that the consultant views the information on screen but dies BR actually see the patient in person. I’m glad to hear you have emailed the glaucoma department however I hope you have mentioned the dark shadow you mentioned which is getting bigger. I would think that would be a reason for you to be seen by a specialist. There are a number of conditions that may cause a dark shadow but if you have been diagnosed with glaucoma they should assume this might be linked to that and see you sooner perhaps than May.
Do chase them up if you don’t get a reply. I think I’d try and telephone the department if I were you if you haven’t had a reply in a say a week. Keep us posted on how you get on! 🤞🏻
Hello Beecalmed.I feel really stupid that I didn't mention my grey shadow in the email, only asking to be seen by the consultant, so if I haven't heard anything in a week , I will phone the hospital.
Thank you Beecalmer, may I ask which part are you living in the UK? I live in London and would like to friend with you if possible, please.
Hi TOTTHII! I live in the South West so not so close! However I’m sure if you call the Glaucoma Uk helpline they will be able to find you a buddy with Glaucoma in London who you can befriend and talk to. Stay in touch on the forum too. We’re a lovely helpful lot on here and I promise you’ll always receive a kind message if you’re feeling you need to talk. 👍🏻🙂
Thank you Beecalmed, it's a shame that we don't live near each other, otherwise, we could meet for coffee and have a chat. Please keep in touch, all the best.
Ten years ago I saw a consultant twice. Since then only glaucoma speciality nurses. The only other time I saw a consultant was when I had my cataract ops and that was only at the time of the oops.
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