Are you worried about your glaucoma? Concerned about a cancelled or delayed appointment? Or do you just want to understand it a little better? We know this is a really scary time for many people, and we want to provide you with the support and advice you need. Unfortunately all glaucoma support groups have been cancelled or postponed indefinitely.
We are running a series of digital glaucoma support groups. Like a traditional support group, there will be a talk by a glaucoma expert and a Glaucoma UK staff member and an opportunity to ask questions. Each session lasts from 7-8pm.
You can attend as many sessions as you like (via Zoom). They are listed on the Events section of our Health Unlocked home page. Why don't you take a look?
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Joanna_GlaucomaUK
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Thanks for the posting. Is there any limit to the number of people that can attend a session ?
I have to admit that although i was diagnosed a while ... ago, i have no idea what I should be thinking of, worrying about or maybe just saying "?". Your list of types of Glaucoma triggered my interest since i do not know what mine is or whether any particular one is better or worse,
I did not note how long the sessions were, is there a max limit ?
Hi Greyone. The limit is 100 people. I'd be delighted if we got close to those numbers, so please feel free to attend a couple. Each session lasts one hour.
It's common not to know much about the different types of glaucoma, and it's sometimes possible to work out which type you might have by talking through your treatment. You might find that by calling our helpline you'll have a clearer understanding of your condition. Alternatively, have a look at our website. The most common types are primary open angle glaucoma and primary angle closure glaucoma, so if you start with those ones you might be able to work out what you have. Then you can see what it means for the treatment and long-term impact of glaucoma for you.
Sorry cannot attend. Am very concerned about new normal and increased used of evaluation clinics. This has to go hand in hand with better patient information. It cannot be a one way information flow. If the information collection point is being standardised so must seeking information about side effects. Communication of targets and options be for treatment. It must not be used to sidestep nhs Investigation bureau into inadequate treatment. Currently parked on apraclonimide which recommended for 4 weeks. Next appt 4 months away ...of it happens.
Hello. The webinar is available to view on our website, if you missed last night's session - glaucoma.uk/news-blog/. Hopefully, you'll find what Nick Strouthidis says about the new normal reassuring. Though we completely agree about better information for people with glaucoma, and stopping the one-way flow of information - we want all patients engaged in their glaucoma care. It's great to hear you are!
Also, if you're concerned about your treatment or delays to appointments, our helpline is available, or you can call your eye clinic. Even if appointments are delayed, doctors are still available and can review your notes. So if they share your concerns they should be able to arrange an appointment with you, even if just a phone consultation.
This sounds really good but I can't personally access such a group. I'm deaf and use hearing aids but phones and online chats are out of the question. Even lip reading doesn't help much!
I'm sure the service will be really useful for a lot of people.
I'm new to this website and I'm not sure if this is the right place to ask this question but I'm having some difficulty with a delayed appointment in the private sector:
I went for a routine eye test and new glasses last week and the optician told me my eye pressures were raised significantly from the target pressures in the low teens. He said there was no cause for immediate alarm but that my 6 month review should not be delayed by long, and certainly not beyond 9 months. He said as I was new to the Monopost drops, my eye pressures were not necessarily stable and I might need some extra medication.
I hadn't been able to get an appt for the review ( which is not actually due for another couple of weeks). The hospital said they had been taken over by the NHS and were not making any appointments, although they were working hard to get something organised.
That was before the eye test last week.
The optician impressed on me the need to get an appt sorted so I went back to the hospital today by email. I asked that the consultant review my notes and advise me what to do, if the clinic was still closed.
The secretary said she would pass my email on but the doctor wouldn't have access to my notes as they were located in the private hospital. I'm a bit surprised about this.
I've had a quick look at the Royal College of Ophthalmologists Guidance in relation to the covid 19 pandemic. I think I'm looking at the latest info and the way I understand it, is that where appointments have to be delayed, the doctor should review the patient's notes and consult on the phone or by video if necessary (not helpful for me, I know!). However, the private hospital can't be following this guidance if the doctor can't access the notes.
Does that mean that these guidelines are being breached in the private sector?
Is anyone else in a similar position?
It's probably a good job I broke my glasses and had to go for the eye test. Otherwise, I would had no idea there was anything wrong. Sorry for the long post. Being deaf, I love email!
Thanks for your message, and I'm sorry that you don't feel you can join the session. They'll be available afterwards via YouTube with subtitles, so perhaps you can catch up there?
You might find you have more of a response to your message if you post it as a new discussion, as it could be a bit hidden here.
However you raise some interesting points, about the ability of doctors etc working in different environments to see notes. It amazes me all the time to see how limited the connectivity is between different parts of the health care sector. There's lots of conversations going on, and we're really keen the issues get resolved.
You're absolutely right that doctors should be reviewing patient notes and talking to them if required. It's worth nagging the hospital as much as possible. Do you know which NHS hospital has taken over the private one? You can try contacting both to make sure you're in the system somewhere. If you can't do a phone or video appointment, they should offer you an accessible alternative. And if you're getting no response, contact the PALS department of the hospital, who deal with complaints.
If you have more questions, please email helpline@glaucoma.uk and a helpline adviser can give you more information.
You tube with subtitles will work for me and I will look out for the posts.
I will post my question in the new discussion sector later when I can get access to our pc (currently taken over by my husband working from home). I find it a bit slow typing on my phone.
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