Do you have glaucoma? We would love your input!

[Kelly_GlaucomaUK]

We would love to hear your opinions and experiences of attending virtual glaucoma clinics during lockdown. How is the experience different to normal? What is good, bad or just worth commenting on? Please send comments to [e-mail].

Are you interested in getting involved in filming discussions? This is for a series of webinars we’re doing, presenting patients’ experiences. You would be paired with someone else who has glaucoma, and have a guided conversation about your experiences of having glaucoma and attending appointments/receiving treatment etc. It would take around 2 hours of your time, and be done via Zoom or other video chat software. If interested or to find out more, contact Joanna Bradley on [e-mail].

We’re also doing work on improving our booklets and other written information to make them easier to read. We need input from people with glaucoma to ensure we’re explaining everything really clearly and simply. To get involved, please contact [e-mail]. If you ever find health information (provided by Glaucoma UK, doctors or anyone else) difficult to read, we especially want to hear from you!

Thank you.

[Yeuclid]

What is a virtual clinic?

[Kelly_GlaucomaUK in reply to Yeuclid]

Hi Yeuclid

Virtual clinics are where you go in to the hospital (or possibly an optician’s) for all of your tests, e.g. pressure test, photograph of the eye, visual field test. This also should include an opportunity to talk to someone about how you are getting on generally, e.g. side effects of drops, how you think your vision is. You then leave without seeing an eye doctor. The doctor will then review the notes and arrange a follow-up appointment if they are concerned or feel that something needs changing, e.g. switch to different eye drops, refer for surgery.

These were happening before COVID, but now they are much more common.

If you would like any further information or advice, please contact our helpline on 01233 64 81 70

[Yeuclid in reply to Kelly_GlaucomaUK]

I have not been to a virtual clinic. I went for my usual checkup appointment in January and was told I needed to have a trabeculectomy. I heard nothing further until July when I was given a date for the operation in August. Had it and now having review appointments and taking 2 hourly steroid eye drops.

[Windflower]

I can’t see how a virtual clinic, that is one done using a video link such as Zoom, can possible substitute for an eye examination, pressure test, or visual field test, all of which require face-to-face consultations. However, a virtual clinic might help patients who have queries which do not require examinations.

Like many of us, I am now overdue an appointment by 12 months. I was supposed to have been seen two months after my last appointment.

Just grateful that I am not a cancer patient who can’t get much needed chemotherapy.

[CV-19]

Hi Kelly, I’m due my twice yearly consultant appointment in theee weeks.

I’ve had Covid19, now diagnosed Long Covid, and my eyes have been affected. Sight in one eye is blurry, white of that eye is dark, and both have had conjunctivitis. Watch this space!

[Joanna_GlaucomaUK Administrator in reply to CV-19]

Hi CV-19. Sounds like you've had a bit of a bumpy ride over the past few months. Good luck! We'd be interested to know how you get on at the appointment. Thanks!

[Windflower]

Can hardly believe this! Just hours after responding to Kelly, I received an invitation to attend the Glaucoma Clinical Investigations Clinic at my local hospital. “A member Of our nursing/AHP team will perform tests that include Visual acuity, Visual fields test, Tonometry (eye pressure measurement) OCT (scan of the back of your eyes). These tests, previous tests and medical records, will be assessed by one of our clinicians and the results forwarded to yourself and to your GP as soon as possible.”

At least something is happening.

[Joanna_GlaucomaUK Administrator in reply to Windflower]

What a coincidence! We hope the appointment goes really well. We'd be really interested to know how you get on. Please send thoughts or comments to our helpline - [e-mail]

[Windflower in reply to Joanna_GlaucomaUK]

Just so anyone can read this. I arrived at the right time for my appointment. Instructed to wait in Outpatients Main Reception. Only one other person there. A nurse came almost immediately to get me and led me through the one way system into the Visual Field Test Room, from there I was guided into the Visual Acuity Room, then into the room for the Eye Scan, back into the Visual Acuity Room for an eye pressure check. Finally I was directed into the one way system and out. Total time 25 minutes; usual time at least two and a half hours.

OK, I didn’t see a Consultant but my test results will be seen by a clinician who will phone me if necessary. The results and any comment will be sent to me and my GP. I really appreciated the short visit as I am the ‘official’ carer for my husband. Downside was that the visual field test was more difficult as the patch on my ‘other’ eye and my surgical mask seemed to interfere with my vision and things seemed steamy. I commented and was told people complained about this and the Staff were doing their best to minimise it.

[HMThai]

Love to get involved Kelly!😊

[MRTSBMS]

My 1st appointment after diagnosis was in early February and was told I’d receive an appointment in 3 months. Obviously that didn’t happen due to Covid. However, after expressing concerns about my vision to my GP and trying to contact my Ophthalmologist via his Secretary, I’ve heard absolutely nothing. Not even a telephone consultation or virtual clinic.

[Joanna_GlaucomaUK Administrator in reply to MRTSBMS]

Hi. That sounds concerning. You're doing the right thing by contacting the secretary and pushing for an appointment. The hospital will be prioritising appointments through a triage system, based on how likely they think you are to lose your vision. I hope that they looked at your notes and tests and decided you are low risk. However, keep pushing at the hospital for an appointment. If you would like to chat this through in more detail, contact our helpline on [e-mail] or 01233 64 81 70. Thanks!

[Hidden in reply to MRTSBMS]

This sounds incredibly frustrating for you. Hope it’s been resolved by now. My appointments have generally been okay but it might be location dependent. That said, a few years ago I did seem to drop out of the system and if I hadn’t pushed feel I would have been lost to them for a while. It pays not to be overly patient. Good luck.

[HMThai]

I used to live in UK back in late 60s. To early 90s when NHS was straight forward,GP refers to Hospital Specialist, who in turn keeps GP informed,why has it more complicated? Aren't there any protocols which patients can follow?even have a choice to pay extra to be seen speedily?

[Joanna_GlaucomaUK Administrator in reply to HMThai]

Hello! Yes the world of the NHS is complicated! It's also important to keep the optometrists in the loop, as they are carrying out the eye tests. And in lots of places there are systems for additional checks, between the optometrist and the hospital (for example to repeat the tests at the optom) to reduce the pressure on the hospitals. So the system varies across the country. One of the things we're working on is to help create a simple-ish unified glaucoma pathway across the country, so that people know what to expect.

[HMThai in reply to Joanna_GlaucomaUK]

Yes, it must be stressful for you all, especially in these unfortunately challenging circumstances!I read more disruptions in the society,I remember London and England without protests!,Hyde park was a lot of fun for free speech every Sundays.☺️....the only thing in my opinion which would take out the sting so to speak is to introduce eye pressure testing in shopping centers,then referred onwards, but with Covid around I don't know how it would be implemented,An open platform database is a global way forward,do you know we don't have truthful up-to-date statistics of Glaucoma readings or patients which we can all share like Wikipedia?.!! Good day from Thailand and blistering monsoon winds and very rough seas..

[Angalgreinne]

Hi Kelly, I had an appointment at the technician led clinic at Moorfields (Cayton Street) last month. I was taken through all the usual tests (pressure, scan, Visual fields) by one technician and was all done within half an hour. A record! I was told that my test results would be looked at by a doctor the next day and given an information leaflet before I left. I had a call from one of the doctors the next morning at 8.30am to discuss my drops as there had been some changes (increased pressure in both eyes and slightly worse field tests in my right). All went very smoothly with my appointment at the clinic and have another appointment for 3 months time. I would, however, like to know what type of questions the technicians would be able to answer. Are they medically trained? Thanks.

[Joanna_GlaucomaUK Administrator in reply to Angalgreinne]

Hi there. Thanks so much for sharing your experiences. The expertise the technicians depends a lot. There is a lot of work going on in ophthalmology to train non-doctors better and make sure they have the necessary skills. Some technicians will have received additional training and be able to answer some of your questions. Others will be on a lower banding. However, if they can't answer your questions, they will make a note of questions you have, and pass these on to the doctors or nurses, who should then get back to you. It's always good to ask questions!! The doctors will always want to know about your concerns, and if you don't flag any, they won't be able to address them.