My partner has had a poor experience of virtual clinics - each time he is transferred across to virtual he is then recalled to face to face - frequently late and has twice needed priority P1 surgery. Recently I noticed that the Royal College of Ophthalmologists had guidance on deciding who should be allocated to virtual clinics and I dont think it is being applied in our major hospital.
His 2021 field test after 20% loss of vision had a mean deviation of -13 indicating not suitable. But his most recent one has a mean deviation of -9.45 indicating he is suitable. I am having trouble understanding the Royal College of Ophthalmologists guidance on who has moderate glaucoma and who has advanced. The MD places him as moderate but the moderate guidance says - no readings less than 0 in the central 5 degrees. He registers 8, less than 0 , 30 and 28 raw scores in the central region. This is in 1 hemifield but he has readings of less than 0 in other areas of the other hemifield. I don't know if this pushes him up a notch and he should be managed as an advanced glaucoma patient. The document I am referring to is this rcophth.ac.uk/wp-content/up....
My husband always says everything is fine and nothing is wrong. His bleb was not examined but 3 weeks ago his pressure was 13 at the opticians and at the hospital visit it was 8 and he had been having a constantly watering eye. He reasonably thought at the time that this was down to dust exposure.
I have no confidence in the hospital whatsoever after a 2021 visit when junior doctor said he was stable, but the fellow supervising the session said he needed an urgent acqueous shunt and the hospital previously accepting that they had been negligent in losing his records for a year previously. Equally I don't want to push other people who may be more needy out of the queue.
His most recent field test shows reductions in vision point by point but the MD is better ...presumably because he has just gone into a new decade.
So question is ...how is suitability for virtual clinics decided and is the College Guidance being observed. I don't think I would mind if transfer from virtual to F to F was quick but in 2021 it took three months.
Obviously this is an NHS patient question.
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Thank you for mentioning the document detailing suitable patients for the virtual clinics. I had always assumed it was just the consultant's decision.
Perhaps it also depends on numbers , as I believe the hospital clinic I attend is struggling to manage the increasing numbers of glaucoma patients.
Despite having had two preserflo shunts and an epi-retinal membrane I have not seen a Doctor for about 2 years , just the virtual clinics . Sadly I am not then able to ask questions or obtain answers.
Next month I have an appointment with a retinal surgeon as the membrane is causing problems.
I think that these days if a patient is worried about changes to vision then it is necessary to see an optician or phone the consultant's secretary and explain any problems directly. This has helped me in the past. We have a scheme locally where any new eye problems can be seen usually within a day by an optician, sometimes a specialist in glaucoma, and paid for by the NHS. It may be worth asking if your area has this very useful service.
The Glaucoma UK Helpline are so helpful when discussing problems and they have previously given me confidence to follow things up.
Your partner is lucky to have you fighting his corner. Would it be helpful to join him at his appointments ? If you really do loose faith in your hospital then I suppose you could consider asking about an alternative.
Do hope you manage to sort out some suitable clinics and future treatment.
Hi! I hadn’t seen that paper before. I wonder if the fact that it is a pre-COVID paper published in 2016 means it’s been modified since to cope with the demands on NHS post COVID? . I found this similar document that’s more recent 2020. Not NHS but UK Opthamology Alliance and not sure if it’s a suggestion or has been adopted:
The bandings/criteria are more detailed and more nuanced I think. A useful starting discussion point with your care team I’d have thought as to your monitoring for your diagnosis?
I’ve been switched between virtual clinics and face to face. For me the switch in and out of virtual reassured me that the system WAS working and my consultant was monitoring me, if from afar. It’s slightly concerting doing virtual clinics endlessly, if you never get scooped back to face to face, as you don’t have anything to prove that the system is working and you are actually being monitored by your consultant. There’s a lot of trust expected on behalf of the patient but a potential for huge anxiety that you’re not being adequately monitored, which is not good for your well-being.
While the policy was determined in 2017. I think I saw it uploaded to their site in 2021...implying it's still current. Tell me do you get informed of the outcome of your virtual assessment. Partner believes there is nothing wrong with him but it's me who hears I can't or didn't see things. He doesn't want me to go in with him really. But; know it is not uncommon for their to be a male bravado about this. When I asked at reception about format of session was not told that there was an opportunity to raise issues so he went into that bit alone.
So when I’ve gone for virtual assessments (currently every 6 mths because my pressures aren’t too stable, retinal bleeds and I’ve lost paracentral vision in one eye) then I just see the technicians who do each of the tests and I’m asked if there’s anything I’d like to report on, but I’m not really given a definitive answer at the time it’s just noted on the computer.
Our virtual clinics are no longer in the hospital they are at a newly built diagnostic facility separate from the hospital. So the whole thing is over in 30 mins. Easy parking. Air conditioned building. Quite pleasant. 🙂
I then wait for a letter from the hospital. This usually takes a few weeks to come through. The time lag usually indicates that nothing has been flagged by consultant. When there’s been changes - then I got a letter from the consultant quite quickly booking me in for treatment or a follow up face to face with him. The face to face I know will be 10 minutes if I’m lucky, as busy hospital so I go prepped with a list of questions and fire them at him and get very concise answers fired back.
I do tend to follow up on any letters taking a very long time to arrive as in lockdown I did have a letter from my consultant go astray and never arrive which delayed my treatment by 10 months.
My husband won’t let me accompany him to hospital appointments either. Maybe you can draft a list of questions together and he can hand it to the consultant? It sounds like you are doing most of the background research so you know the questions to ask. You could always write on his behalf to his consultant and see if you get a call back.
In terms of judging how bad our eyesight is, I think glaucoma is so so tricky. I swear I bump my head and walk into things more now than I did. I miss shoes left in my path and trip over them, I hit door jams when negotiating doorways far more often than I did. But technically my visual acuity is good and I shouldn’t have lost enough vision in my right eye to cause these issues. I suspect that the drops and procedures I’ve had to control my glaucoma have encouraged the growth of cataracts etc so things are more blurry, but I do believe that the quality of my vision is just not what it was before the glaucoma. Maybe I’m just getting old! My consultant says my tests don’t show the level of issues I have with my sight. It just seems I see the changes before the test results show them. I’ve no idea how this can be. 🤔
Virtual clinic appointments tend to be given to patients, who's glaucoma is stable and well maintained. Otherwise they are normally asked to attend the eye clinic to be seen by the eye specialist.
If your husband feels this needs to be the case, he should call the eye secretary at the hospital he is under explaining his concerns. She can relay this back to the consultant and get back to you. He can request if possible, to be seen by the consultant rather than a junior doctor or registrar. If this is possible, this can be arranged. If not possible, whoever he sees will have been trained in all aspects of glaucoma under the umbrella of the consultants clinic. If they are not sure during the appointment, the consultant will always be around to consult.
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