Good morning, lovely forum. I just want to moan really … I was diagnosed with Glaucoma just under two years ago and could write pages about how generally frustrating and disappointing I have found my hospital interactions but the latest just tops them all. My last appointment was my first at the virtual clinic. At the virtual clinic you do everything that you do at a regular appointment except have access to a doctor. Sounds okay on paper and they reassuringly said - in writing - that results are reviewed and patients contacted within 2 weeks and if you don’t hear from them by 3 weeks just ring your consultant’s secretary. Four weeks and nothing so I tried the number - no answer - all day. Sadly, I wasn’t surprised. However, having a bit of time on my hands I rang around the hospital, finally landed in the eye dept. and spoke to someone helpful and willing but ultimately ineffective who ‘chased’ it for me. Two weeks later: nothing. It’s now 6 weeks since my appointment and I’m still waiting. Why are services like this set up when they don’t work? When I say that I mean for me since I can see that it’s a great idea for a busy hospital. The issue for me now is one of trust. I don’t feel like I’m being given good treatment now or have confidence that my condition is being managed well. Am I unlucky or is this just par for the course? Thanks.
Virtual Clinics: Good morning, lovely forum. I... - Glaucoma UK
Virtual Clinics
It is frustrating when you are told that you will get results in a certain amount of weeks and it doesn't happen.
If there were any concerns regarding your glaucoma after the tests at the eye clinic, the consultant would have arranged for you to be seen to discuss your treatment and any intervention if needed. If you don't hear from them, this normally means that your glaucoma is being well maintained and stable.
Sounds exactly like my husband's experience except that I specifically asked to be told his visual field index which was better in his operated eye than previously but significantly worse I his good eye. He doesn't know what is happening, he has heard nothing like you. 4 years ago the consultant said he thought he needed surgery in the second eye but the worse eye needed intervention after intervention si I can understand why that did not happen. 9 months ago he was told there were changes in his good eye but not told what they were. Previously he had a disk haemmorage before a 20 per cent drop in visual field . Miraculously he was given a printout of the latest field results which showed progression from no glaucoma to moderate glaucoma over 12 years in the good eye. Is it normal just to accept this level of progression. He has no reason not to have further intervention other than it taking 10 years to get the bad eye sorted finally with an aqueous shunt. The hospital had accepted it was negligent in some of previous care. So I also have zero trust.
Thanks for replying. I find it frustrating when they set up protocols and then ignore them. I’d like to think that there isn’t an issue (probably fine) but feel like I need to chase it because I don’t actually know that the tests have been viewed by a doctor, unless someone tells me that they have. I think we need to be proactive.
Like you once a year I am seen at a virtual clinic but it is only if something is wrong eg if your pressure is high then you see a Doctor I also get a check up by Health Harmony once a year ( this is a service where you are referred by your GP if is anything wrong they refer you back to your hospital ) they are superb
Thanks for replying. This sounds good.
I have found the best way to communicate with the consultant’s secretary is to email, like you the phone is rarely answered.
Good luck, I hope you get the answers you need.
Par for the course I think. I have two 'pathways' at my local eye department, one for raised eye pressure and one for a 'freckle' at the back of my retina. At each consultation I have at least three tests that are the same - so I think it would be more a more efficient use of the department's time either for me to have the two consultations together or at least to share the test results. This year I was asked for the eye pressure appt to go to a cottage hospital about an hour away to reduce waiting lists, and I had the freckle appt at the main hospital two weeks later. Both were virtual appointments, and were nearly 8 weeks ago now and I've heard nothing. I did ring about 10 days ago re the eye pressure one and was told the consultant hadn't looked yet ... but would soon. It might be more efficient, but I can't think it reduces the main waiting lists for active treatment at all, and simply delays them into further bottlenecks.
I agree with you. I don’t have an issue with waiting or the service being busy - these are facts of life. Like you, I’ve had the same tests repeated many times and seen different doctors who all seem to have a different opinion. If there is a problem, how can it be more efficient to deal with it weeks later at yet another appointment?
There are royal college of ophthalmology basic levels set for suitability for virtual appointments...and I do not believe my partner fell within this category. Like you his records were 'lost'. The visual field he has lost now does not particularly affect him the damage will show up in the future. Sadly his consultant published an article saying most of his patients would be dead within 7 years so treatment should take this into account. Maybe that should be the case but the data on a virtual appt doesn't show the human who is still working driving etc etc or equally the person who might have a terminal diagnosis and not want the hassle of repeated surgery. I think there should be basic standards for virtual apprs set by the patient as well as the hospital.
Good morning from Thailand! You wrote:
"Sadly his consultant published an article saying most of his patients would be dead within 7 years so treatment should take this into account"My jaw dropped reading this,a Consultant or anyone else for that matter in the medical profession has no right to be judgemental about Patients longevity!They have a duty of care and prevention and intervention at all times in all areas of Medicine, especially Eye Care!Do you have access to this publication? please forward to me as I am interested to read it!
Thank you, great thread here and I am in the middle of communicating with my GS,at least we can liaise with eachother on a friendly level!
I also had my first virtual appointment back in August. I have open angle glaucoma and have been on drops for many years but all of a sudden I no longer have access to a doctor in spite of the fact that my pressures have never remained stable for too long. When I queried that the pressures taken at the virtual clinic were higher than the previous appointment when the drops were changed from MONOPOST to Fixtapost I was told that I would be contacted if there were any problems. However since August I have not heard a word. They may well have decided that looking at all the tests meant that they have no concerns but I still fell it would be reassuring to be told. All the other appointments up to August were always with a doctor and at least I got a copy of the results a week or so later. I finally made an appointment with my optician who is a glaucoma trained ophthalmologist and she at least was able to put me out of my misery. My latest most recent pressing problem is that no pharmacy around me has any supplies of Fixtapost so on Monday I am back to the hospital to find out what I have to do now.
Hi Choirlover,
I use Fixapost too. The hospital gave me a temporary prescription for the two components of Fixapost to be administered separately. Hope you get sorted. Like you, I feel that the virtual clinic has removed my access to a doctor. My main issue isn’t the clinic itself, since I can see that not everyone needs to see a doctor at every visit, but the fact that the clinics have been set up with certain protocols and safeguards in place which have been immediately ignored. My hospital stated that results are reviewed and then GP/patient informed of the outcome within two weeks. They didn’t say, ‘we’ll get in touch if there’s a problem’ or ‘we’ll get back to you in a few months’ as obviously this would have been as an clear worsening of what’s offered - yet they’re doing that anyway. Once ‘we only let you know if there’s an issue’ becomes established then patients will never know if anyone is looking at the results or not. I know we have to get used to it but that doesn’t mean we have to like it.
Health watch have been filling up my Facebook feed asking for feedback on outpatients appts. I think a positive or negative response from a virtual appt is essential. After all you get this from other things like bowel cancer screening. healthwatch.co.uk/have-your...
Dorzolamide (Eyedelto) runs out too quickly 
change in eye drops
Update on pressures 
Help can’t get eye drops 
frustrated and anxious re appt 
