Introduction

[sharon_GlaucomaUK]

Hi, I'm new in the Glaucoma world but have been in the sight sector for a while so really keen to see how we can make sure people with Glaucoma keep their vision for life.

[Hidden]

Hi Thankyou for your post. I did think people with gluacoma kept their sight for life. Sorry I’m just a real worrier

[sharon_GlaucomaUK in reply to Hidden]

As long as people living with glaucoma have their eyes checked regularly and comply with their clinician's treatment plan (if they have been asked to do so) there shouldn't be any need to worry. I'm sorry if I alarmed you.

[Hidden in reply to sharon_GlaucomaUK]

Hi sharon_GlaucomaUK I’m alarmed by everything to do with gluacoma at the moment it wasn’t personally you. Your all great at Gluacoma Uk it just so so scares me. My anxiety is through the roof with my diagnosis. I talk to such lovely people on here and it really helps x

[Charliecat123 in reply to Hidden]

Hi Julie. I’m like you too. I’m not doing so well..just so depressed and anxious. I also worry about always being negative on here!! 😢

[Hidden in reply to Charliecat123]

Charliecat this is a safe space to say how you are actually feeling instead of trying to put on a brave outward face but be suffering inside. There's always someone here to offer support and listen . You aren't always being negative you are doing your very best to navigate what is sometimes a really rocky road x

[Charliecat123 in reply to Hidden]

Thanks ❤️ Xx

[Hidden in reply to Charliecat123]

Hi Charliecat123 the people on here are lovely. How long have you been diagnosed is it open angle how old are you. It does make you so anxious I feel like it before and after hospital appointment today xx

[Lovemy2woofs]

I think it’s down to ongoing research and looking at new treatments or ways to improve outcomes etc....

And unfortunately a lot of issues are around long waiting lists , people not seeing the same consultant or not having enough access to a consultant , some are resorting to private care as are terrified of waiting .

Plus not all patients comply with medication regimes or turning up for appointments.

[Spanieldoglover in reply to Lovemy2woofs]

Hi Lovemy2woofs, yes I’m one of those that have resorted to private care. I am lucky enough to have private health insurance so had my cataract ops and at the same time found out I had glaucoma. My doctor did an NHS referral straight away but unfortunately I still haven’t heard anything a couple of months later and am too scared to keep waiting as I already have nerve damage so am going ahead with treatment privately. I’m not sure how long I can do that as obviously glaucoma is a chronic disease needing ongoing treatment, but having read some of the stories you describe on here it worries me that I’m not even ‘in the system’ with the NHS yet.

[Lovemy2woofs in reply to Spanieldoglover]

Yes very scary times now with any NHS treatment .I wish you all the best x

[Spanieldoglover in reply to Lovemy2woofs]

Thank you and I wish the same to you x

[Hidden in reply to Spanieldoglover]

Hi Spanieldoglover I went down the private route too initially as I was told it would be up to 9 months to even get a referral on the NHS and that was pre covid!!! I had moderate vision loss and optic nerve damage and I just couldn't wait that length of time ,I had both my cataract ops done privately . When I did eventually see an NHS consultant he wasn't a glaucoma specialist and he admitted he didn't have the skills to treat me as all he could do was prescribe drops, he knew my private consultant and referred me to him . I now see my private consultant on the NHS and am about to have a second trab. I realise how lucky I am and my initial outlay to see him privately was the best money I have ever spent.

[Spanieldoglover in reply to Hidden]

Hi Witchie, sounds like you were in a very similar place to me. I’m so glad it turned out well for you and you were able to see your consultant on the NHS. Unfortunately my consultant doesn’t work in the NHS but is solely private. But at the moment I’m going with him for SLT and am waiting to see what the NHS say when the referral finally comes through. Like you, I just don’t want to wait as I already have nerve damage and have probably had glaucoma for some time before diagnosis. Thank goodness I got cataracts really.

I hope you enjoyed your birthday and good luck with your second trab x

[Hidden in reply to Spanieldoglover]

Our situation definitely seems very similar, I had undiagnosed Glaucoma for years too and when in that position you just can't afford to wait . My consultant told me if I had waited I would have been in a pretty poor way as I had closed angle glaucoma and constant headaches which he said would only have escalated. My cataract ops were to open up my angles which they did . That's a pity your consultant doesn't work for NHS too, I found it so much easier as I had already built up a relationship with mine . My first NHS appointment was with the nastiest female consultant I have ever met, she took total offence about the fact I had gone private and was beyond rude, luckily I never saw her again and only had 2 other appointments with a very lovely opthalmologist before being back to seeing my private consultant .

Fingers crossed SLT is successful for you and you get your NHS referral through soon. Waiting is the worst part especially when it's for something as precious as your vision .

I had a great birthday thank you. I have my pre op covid test tomorrow but I've come down with a cold so I'm not sure what will happen. I will need to call the hospital tomorrow and see what they say. Nothing is ever straight forward 😱 x

[Spanieldoglover in reply to Hidden]

Oh no! You’re right nothing is ever straightforward. It is hard to change consultants when you have built up a relationship with them and trust them. It sounds like your early experience was horrible so it’s great that you are now with your original consultant.

I think I’ll take it step by step and play it by ear as to what to do. I know I’m likely to get the same reaction as you when I initially go to the NHS.

I’m so pleased you had a good birthday and 🤞all goes ahead with the trab op.

Let us know how you get on x

[Wales99 in reply to Spanieldoglover]

Yes mine was undiagnosed for years too, as a consequence I have quite a lot of sight loss in one eye which is why I was so grateful to have the private cover.

[Spanieldoglover in reply to Wales99]

I know it’s such a worry and why we then feel pressured to go privately and like you I was lucky enough to have private health cover.

[Hidden in reply to Spanieldoglover]

Thinking of you xx

[Wales99 in reply to Spanieldoglover]

Yes me too. I’m very lucky in that I work for a private healthcare company so have had my care so far covered. However, as you say, Glaucoma is a chronic condition so sadly my insurance has now run out. I asked my consultant what happens now & he said I would have to go to my GP and get a referral - having heard such awful stories about NHS waiting lists and people (my cousin for one) getting “lost” in the system, I have decided to self-fund for now. It’s a push but luckily my husband & I both still work, not sure how long we can fund it for though but as my husband says, eyes are so important.

[Spanieldoglover in reply to Wales99]

That’s where I am too and my husband says the same. It is a worry though isn’t it as we never know how much treatment we may need in the future. Hopefully things may be better in the NHS when Covid is more under control and they’ve had time to catch up with their waiting list 🤞

[Wales99 in reply to Spanieldoglover]

I really hope so!

[Anonoms]

I think there needs to be a focus on improving NHS services. We had used a patchwork approach of NHS plus private field tests, but after being diagnosed with nearly 20% field loss over 8months in a private field test there was a further 10 week wait to be seen. The campaign that encouraged people to contact hospital when they became overdue needs to be ramped up since even when you contact them to complain about lateness you are not being seen. Surely there can be a citizen science project to flag up delays across the country. At the moment it is like battlefield medicine, there is no discussion simply 'You will get x operation'. Informed consent has disappeared. Consultants are writing scientific papers but that information is not filtering down to patients. How about insisting that when a consultant writes a paper, especially if its a retrospective review, that this MUST go hand in hand with a simplified version for patients. Particularly this should be so for any Glaucoma UK funded research.

[Wales99 in reply to Anonoms]

Absolutely agree. I’m not sure but I think in Scotland they have started training opticians so that they can carry out routine checks & refer if necessary. I think we should start doing that in England.

[Spanieldoglover in reply to Wales99]

I agree with this. I think opticians definitely need more training as my glaucoma was not detected even though I paid for the OCT scan and visited my optician regularly as I have a complex prescription. My consultant said they have the equipment but are not trained in using it properly. Hence I was told by the optician that apart from cataracts my eyes were healthy so it was quite a shock to find out I had glaucoma and nerve damage. It seems this is an important area to look at, as the optician is our first contact in eye care and if they’re not detecting problems with eye health then we are diagnosed late and damage is already done that could have been prevented.

[Wales99 in reply to Spanieldoglover]

Yep. Absolutely the same. It’s in my family, mum had it as do several of her siblings and my cousins although oddly my sister doesn’t have it. I went for annual eye tests and said every time that my mum had it and went blind eventually & I was terrified of the same thing happening. Every time I was reassured that I was fine, I wouldn’t go blind & there was no sign of Glaucoma 🙄. Even in January last year I told them I was getting blank/ greyed out spots intermittently in my vision - that still didn’t raise alarm bells with them. I was then diagnosed in October last year when the greyed out spots had become permanent & it was too late. If I knew back then what I know now I would have done something about it but I trusted them because this is what we’re constantly told- go for regular eye tests. I always thought I’d be fine because even if I got Glaucoma it would be picked up early. Hey-ho.

[Spanieldoglover in reply to Wales99]

That’s awful and again similar to me as I was also constantly saying I had a problem with my vision and ignored. So much so that I’m even considering whether that is a case of neglect. But aside from that, if we’ve both had this problem, I’m sure a lot of others have too, so further training for opticians in diagnosing and being able to use/read the diagnostic equipment they have is vital.

Hopefully something Glaucoma Uk may be able to look into in some way.

[Wales99 in reply to Spanieldoglover]

Was it Specsavers by any chance? More concerned with profit than individuals. I did complain and the director of the branch did a full investigation then sent me pictures of all my OCT scans proving that there was no sign but as I know nothing about eye health they could have told me anything & I would believe it. Anyway- onward & upward- I am grateful that they are on it now & hopefully what little sight I have left in my right eye can be preserved. I have changed opticians and am now with a very good independent one. Good luck on your journey 😊.

[Spanieldoglover in reply to Wales99]

Yes it was Specsavers and I have also changed opticians 😊. Yes we’re both being treated now thank goodness and I hope your site in your right eye is maintained. It all seems quite hopeful once treatment starts.

Good luck on your journey too and no doubt our paths with cross again on this forum 😊

[Beecalmed in reply to Wales99]

This is pretty much what happened to me at my previous opticians. Regular checks, declared history of glaucoma in the family, but blobs in vision ignored as field test and pressure readings ok. Glaucoma only picked up by a new optician, who by luck was trained in recognising glaucoma, when I moved house. Devastated to discover I had glaucoma in both eyes and significant central vision loss in one eye. I’ve paid for some sessions with private glaucoma specialist during lockdown as just not physically seen my consultant since 2019. I was only diagnosed in 2018 and was supposed to have 4 - 6 mth checks. Just hasn’t happened during Covid been more like 10 mth checks in a virtual clinic so machine tests but no consultant checking for disc bleeds as previously. Consequently and unsurprisingly my glaucoma is progressing, having SLT currently, as run out of drop options but I still don’t get to see a consultant. Let down first by optician system and now by NHS due to COVID. Unfortunately we don’t have health insurance and our family business took a massive hit due to covid so my options are limited. I would sell everything to keep my eyesight but I am also preparing myself for a life without eyesight or reduced vision at the very least. I’m 58. It’s unlikely I’ll keep my vision till I’m my parents age in my 90s. On a medical driving license so not sure how long I’ll be driving either. I live rurally and I have to drive for 20mins to find the nearest bus stop. The buses run very intermittently. Let down by successive government cutting rural transport. I could go on with the tale of woe but I’m damned if I’m going to let my life be ruined by government and society’s bad decision making and poor priorities so I keep bees, make clothes, walk my dogs and try really hard not to think about the day I may not be able to do those things. I am also sure there is someone in the world a lot worse off than me. I would just like to change things for glaucoma sufferers in the future. How can the biggest cause of sight loss in the world be so seriously under researched and treatment still so hit and miss? We don’t even know what causes glaucoma. High IOP is a symptom but no one knows why it happens. And even then some of us have low IOPs and still have vision loss. We made a covid vaccine in less than a year. The cat is out the bag. It clearly is possible for research to find a solution for glaucoma. So the big question is why isn’t it? Phew! Moan over. That feels better. Back on with life. 😂

[Wales99 in reply to Beecalmed]

Oh bless you. That did make me smile. It’s good to hear that you are looking on the positive. What helps me is researching what help I can get if I do lose my sight. I find if I have a plan I feel better but we’re all different. For me the hardest thing would be not being able to read or watch television- I do love my Netflix series! But there are audiobooks & audio descriptions for TV shows so not all is lost. Absolutely agree with you about the research and funding though. I think a lot of it is down to the fact that it is considered an “old persons “ disease and old people are written off in our society (totally wrong & unjust). It most certainly isn’t a disease that only affects the elderly but a lot of people when I told them of my diagnosis said I was young to be diagnosed with it 🙄.

[Beecalmed in reply to Wales99]

Yes I do have some plans! It helps me too! Beekeeping- sorted! There’s a Women in the US beekeeps and is registered blind. She uses hearing, touch and smell to read her bees. Determined to continue beekeeping whatever happens.

My dogs! - I’ll get an assistance dog if my eyes get very bad. Won’t be without dogs that’s for sure!

Reading - already using audible!

Driving - electric bike plus cross country wheels for shopping ( it is very rural and hilly here) and possibly a wee trailer to get to my bees in the out apiary. If it’s wet my husband says I could use the ride on lawnmower to get about - ever the joker. 🙄

Sewing and making - not sure on this one need to google a bit. Knitting won’t be a problem if my sight goes though.

Not perfect solutions but makes me feel like I have a bit of a plan, if things don’t go to plan, so to speak.

[Wales99 in reply to Beecalmed]

Exactly! That sounds like a great plan (Stan). I did try Audio books post-trab but found that my mind wandered….. I’m sure I would get used to them.

[Anonoms]

They do already use opticians where we are both inside and outside the hospital and actually u find them better than the trainee junior doctors. I also think that as patients people should be allowed to feed back negative criticisms of trainee consultations to tutors so that they could be used to see what the patient experience is. I would settle for this being anonymous so that no particular trainee felt picked on. Would give a roundedness to their training

[Wales99]

I agree. It really isn’t good enough. More training definitely needs to happen.