Apologies in advance for too much or too little information. I’m not sure where to turn to next after a rather distressing recent appointment and would welcome any help, guidance or additional explanation.
I was referred to the community eye people eighteen months ago and had my first appointment in January 2023. The woman who examined me there, quite throughly, explained I had Pigmentary Dispersion Syndrome. She said this had a chance of turning into glaucoma in the future so she scheduled another appointment for this year and said if there was no deterioration then I could be discharged back into the opticians care.
Fast forward to this follow up appointment a couple of weeks ago. The person I then saw lacked people skills or worse and simply said well you know you have glaucoma. I attempted to get clarification of if this was a deterioration that he could see on the scans. To which he said that I’d been diagnosed with glaucoma last year. When I said that wasn’t my understanding he suggested I didn’t understand because unlike him I’d not been trained for years. When I asked for further information he said not to worry myself and ask questions before scooting me out of the room double quick. He then sent a letter to my gp saying I was “anxious with lots of queries”.
So I’m now so confused and worried. I was given no information on what glaucoma was or any patient leaflet. Importantly I don’t know if this is something that got worse over the year or if he is seeing the same as the woman last year saw. Where do I go next or should I just keep calm and not attempt to get a better understanding?
To make matters worse I had a haemorrhage in one eye the day after the appointment and my vision in my left eye is not as focused as usual. This feels too much of a coincidence as I’ve never had this before.
Reading through a few posts here I see mention of DVLA and of whether one or both eyes are affected. I have no idea as that information was not mentioned.
I am anxious now particularly as I don’t know how glaucoma works in terms of loss of vision I just hear it is irreversible. Will I wake up one day with loss of some/all sight?
thank you for reading this
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sandi
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Hi sandi 👋 Sorry to hear you had such a bad experience - what a patronising *#%! of a doctor!
You could try contacting Patient Liaison at your hospital for support (and, frankly, to complain about your doctor, but that one’s up to you whether you pursue it…) Here’s a page about the service in England - I’m not sure what shape it takes elsewhere but there should be something equivalent - nhs.uk/nhs-services/hospita...
If you’ve been diagnosed with glaucoma, you’ve most likely been prescribed eye drops and as long as you take them faithfully, you’ve a good chance of preserving your sight well. I think any deterioration, if it did happen, would most likely be gradual (and so could be picked up at appointments and your treatment adjusted) - it’d be very unlikely to suddenly wake up one day with massive sight loss. Some people (I think especially with acute angle glaucoma) can have sudden onset of high pressure which needs treating quickly, but you’d know if that was happening. I don’t have that type so don’t know too much about it.
Have you visited the Glaucoma UK website? It’s full of information, so I recommend a visit there for lots of useful reading.
In terms of your concerns for your left eye, you should be able to call the secretary/ies at the eye hospital, describe what’s happened and leave a message to be relayed to the consultant.
Best of luck - it can be daunting when first diagnosed, but for many of us soon becomes just a normal part of life and not especially difficult to deal with.
No, I’ve not been prescribed any eye drops or had any treatment plan. This is also confusing me as I think from what I’ve read that would be usual? It was just “you’ve got glaucoma see you in a year or so”. Hence why I am so confused.
I’ve never had any problems when I’ve had previous eye issues and been referred to the hospital which had a great eye department. I’ve thick corneas and previous opticians have been worried about the pressures so have referred me. There was never any suggestion at those times that there were problems beyond the corneas affecting the readings. Unfortunately getting to see anyone at the hospital doesn’t happen now and it’s the community eye places we have to go to - a private company subcontracted to the NHS. They don’t even have any access to NHS medical records so are not aware of previous problems, which seems crazy.
I have looked at the Glaucoma UK website but am still a bit confused as to what it actually is and what specialists see that leads to the diagnosis. Sorry if I’m being thick here but presumably they can see some damage and it isn’t just the high pressures?? My pressures aren’t high once the cornea thickness correction is done as far as I know. So the basis for the glaucoma diagnosis must be something else? I’m so confused.
I’ve no idea I’m afraid, I’m just another glaucoma patient
Why don’t you give the Glaucoma UK helpline a call or email? I’m sure they’d be happy to chat - glaucoma.uk/care-support/he...
And the PALS I linked to above (or your local equivalent) would also be worth contacting - if you’ve been left feeling confused and poorly informed about your condition, I think they should be able to help advocate for you.
I’m also sorry to hear about your dreadful experience. No wonder you’re anxious. Did you do the field test at your appointments? If so any change between the two tests would be an indication of glaucoma. Your optician can also do a field test and if there are concerns refer you, hopefully, to an NHS hospital eye clinic not an outsourced organisation. There is also of course the option to see someone privately. Not something we should have to do but increasingly sometimes the best option.
Thank you. All tests were just done by machine - a scan a week before and then just a look in my eye (where you rest your head and look at a light - not sure of technical terms!). There wasn’t the one where you press a device when you see things - that is a field test I think?? Much more was done before and during my initial appointment when the pigmentary problem was diagnosed.
I was wondering about going back to the optician but they only refer to this new community eye outfit now not to hospitals. So I fear being stuck in a cycle of optician to community eye to optician and on! My GP sees eyes as an opticians remit so wouldn’t refer to hospital either.
I’m happy to see someone privately to put my mind at rest but don’t know how to find a good one. Is there any patient list of recommended private practitioners?
Hi Sandi! What an awful experience you’ve had! Idiot doctor!
You need to find out what your diagnosis is. So the community eye hospital should have written to your GP with your diagnosis. That letter should have been copied to you. I don’t know how long ago your appointment was but it can take a while for the letter to get issued, particularly if you’re situation is not deemed urgent. I would contact your GP ask if they’ve received the letter from the community eye hospital or if your notes have been sent digitally, and if they haven’t ask them to let you have a copy when it arrives.
Positive takeaways are that if you have a diagnosis of glaucoma I would anticipate you would have had field tests done (the ones with the flashing lights) and probably eye drops to take, and the fact you have had neither suggests it might not be glaucoma yet.
Try not to worry, but do try and find out about that letter. The letter will answer your question and then you can decide what to do next.
Thank you. Yes the letter arrived within a couple of days but it just effectively said no new diagnosis from previous year as well as saying I was “anxious with lots of queries”!! Which to my mind is not unsurprising. Since he was saying that the Pigmentary Dispersion Syndrome meant glaucoma then it didn’t really get me any further.
BUT Today I spoke to a lovely person at Glaucoma UK who confirmed my interpretations of the situation and understood why I was confused by lack of treatment plan and of testing fields. He also answered my queries about what glaucoma actually is which the doctor refused to answer. That then gave me the confidence to speak to someone at the community eye company. Initially I attempted to speak to their quality team on the number they publish for them but couldn’t get past the call handler. She was really kind though when I explained that actually putting in a formal complaint in writing would only address part of the problem and what I also needed was the clarification of the status of my eyes. I was so frustrated and a bit emotional by then. She went off to speak to her manager and came back and said they’d give me another appointment but not to worry the consultant I’d seen was no longer working for them!! She said that maybe that means others had complained too - which I took to mean they had rather than ‘maybe’. I was given a choice of who to see and it looks like I’m booked in with the woman I saw last year who diagnosed the Pigmentary dispersion syndrome. So fingers crossed.
It doesn’t resolve the vision problems I have after the haemorrhage but hope that she will assess that too at the appointment.
Hi Sandi, what an awful experience and I’m so glad that you have an appointment. A good idea would be to write down all your concerns and go over them before the appointment ends. Don’t worry about asking things again if it’s not clear. You want to leave with a good understanding of where you are and what will happen next if anything. Perhaps taking someone with you too if you can. I’ve learnt this the hard way! Have had some negative experiences, but also many good ones too. I too get anxious as this is scary. All the very best, Beth
Well done! It sounds like you’ve made some progress! I really hope you get the lady you had last time. I think that’ll be useful to speak to her and ask questions now you have more information from Glaucoma UK.
And if it should be glaucoma, you need to be clear how they intend to treat it, and whether or not you have to disclose it, because the DVLA guidance suggests you should. I just think they need to be a whole lot clearer. They owe you these explanations. I’ve never heard of untreated glaucoma, but I may be wrong.
Seconding Beth’s suggestion of taking written notes into the appointment, and I’d also suggest making written notes - or even asking if you can make an audio recording with your phone - so that you can check back on things after the appointment.
Well done for persisting - how great to hear that doctor is gone!
Yes to questions. I had prepared those last time but was thwarted by the guy’s refusal to answer them! Hadn’t thought of doing a recording - v good food for thought there🙂
My advice is that if you make a recording that you say so to the Dr and stress that it is only for your own personal records, so you have a record of the inspection, to better understand your treatment.
Drs might not be happy if they think you are going to share it, and if you did share the recording, be aware you could be breaking UK Data Protection Laws if the Dr hasn’t given permission for the recording to be done or shared. You don’t want to create a relationship of distrust with your key eye doctor. Clear communication and understanding is your goal. 👍🏻
I echo everything that has been said so far. In answer to your question about how to find a good private consultant I used the Top Doctor website, looked for opthamologists and, as a subset, those that are glaucoma specialists and then, their ratings from other patients.
I know we shouldn’t have to given we have the NHS but the pressures they’re under meant (for me at least) I couldn’t risk it.
My private guy is lovely; very patient and happy to answer any and all of my (very many) questions. I feel confident that, if I do need greater intervention than the drops I’m on right now, I will be in safe hands. I wish you the very best of luck!
Under the NHS Choices you have a legal right to choose where you are referred for NHS treatment and you are also able to ask your GP to refer you for a second opinion on the NHS although you do not have a legal right to this.
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