Anxious

[Olalflel]

After years of, ‘your pressures are a bit high’ at eye tests, a referral ignored by my GP and Covid I arrived at my first hospital eye appt a year ago. I had high 30s pressures and was diagnosed with Glaucoma in both eyes - significant nerve damage in one eye. I was reassured, offered SLT and given drops. Four months on at the follow up appt (the SLT phone call had never come) my pressures were in the teens. All good except that at this appt my medication has changed to make it easier for me (?) and I was advised that I wasn’t a good candidate for SLT as I had sensitive eyes. Next four month follow up didn’t happen - after 6 months I began to have problems with both eyes and went to my (excellent) optician. Both eye pressures high again so I was by referred by her for an urgent review. Finally, another month on, after further intervention by her, numerous phone calls etc I have an appt in two weeks.

This has been stressful and upsetting and I no longer trust the hospital to look manage my condition and protect my vision. The ‘care plan’ seems to vary depending on who I see and when I then experienced problems I couldn’t get any help. The thought of this situation rolling is making me feel anxious. Do I have unrealistic expectations? .

[Safehaven23]

I sympathise with you. I had been on certain drops for years and then the hospital said they would like to change them - I assumed not working so did not complain. I was put on to Azarga and over the next few months felt inceasingly unwell..palpitations and fatigue. Visited Suegery and was told they did not do eyes (!) and to wait for hospital appointment..so researched Azarga myself as was only thing different . and discovered it can be very serious to the health of some people - over and above the reaction I was experiencing to it..and should stop it. Then found Dr Bourne at Addenbrookes offered SLT so asked my GP for a referral to him - so could stop the drops. Then I got offered an appointment with the local Consultant - he confirmed I was correct to refuse those drops. Was put back on Ganfort by the new hospital after SLT and pressures reduced ever since.

I was put on Azarga because it was cheaper! Question everything! Since had Cataracts removed and stents put in my eyes - pressures down to 12/14 consistently now.,

[Longwalks3 in reply to Safehaven23]

I am very glad to hear that you have stable pressures now but I find your story upsetting to read. Far too often communication at glaucoma clinics is very poor/non-existent and this leads to anxiety and problems, I wish you well in your future care.

[Safehaven23 in reply to Longwalks3]

You are so right...the stress endured reduces me to tears some days - it has been helpful to share experiences on here and learn from each other. If you have no-one to accompany you to appointments you are already at a disadvantage...as need someone there to witness it all too! Unfortunately we are not always up to having to fight for help..but we must always try! Best Wishes to everyone.

[frankthebank]

Hi Olalfel, You already have some good advice from Safehaven. I just wanted to say that you definitely don't have over expectations, it sounds like you have been messed around a lot, and I know exactly what it's like when you see different doctors all the time (most often junior doctors); you end up with no confidence whatsoever in their advice. This happened to me and in the end my eye was so bad I had to go private, I found a doctor at my NHS clinic went to see him privately,.after which he then organized for me to see him on the NHS, now I only see him. One thing I have learned on my journey though is NEVER take no for an answer or wait if you know you have an issue with your eyes (and we do know, because we know our eyes) always ring up for an emergency appointment and say your eyes hurt, basically whatever you have to say make sure you get an appointment and this will be the same or next day. You have to put yourself first, if I hadn't pushed many times, things would be very bad for me now. All the best to you.

[Purchris]

Hi Olalfel, I absolutely agree with the previous comments. It’s really important to proactively take control of your treatment plan and push to be seen when you need to be - as frankthebank says, ‘we know our eyes’. Trust what you experience rather than what you are told. I lost vision by putting my trust in the clinic to follow up in a timely manner. I learned the hard way and as a result I now question every decision and chase up every late appointment. Clinic staff are under a lot of pressure to reduce waiting times etc, particularly after covid. My concern is that the quiet and undemanding patients get overlooked (I used to be one of them). Don’t be afraid to push.

[Olalflel in reply to Purchris]

Thank you. You are right. I’m one of those people who has trusted them. Not any more. My current ‘care plan’ says ‘SLT cancelled’ followed by ‘SLT both eyes’. That doesn’t even make sense!

[Bellamolly60 in reply to Purchris]

well said always go with your Gut felling

[Olalflel]

Thank you for taking the time to reply. It’s good to have some support. At times I think at least I’m in the system but then on other days I feel really cross that I’m having to keep pushing.

About a week after the optician referred me to the rapid (supposedly) eye service and I’d heard nothing, I did go there in person. My eye was uncomfortable , blurry and I’d had a headache around my eye for a few days. There were no doctors there (not a strike day) but a nurse took my pressures which were high 20s, not too bad for me and promised that a I’d be rung next Monday (this was Thursday) re an appt. They denied all knowledge of any referral. Of course, the phone call never happened. Luckily I had the option of going back to the optician who resent the referral and wrote, resulting in an appt. This has taken a month. It’s worrying that you can’t get help unless you make a nuisance of yourself. While I was reluctant to bother my optician again, at least she’s interested. I’m definitely going to be clear about what I would like to happen when I go back to the hospital, whether or not this will be effective remains to be seen.

[Eahldt]

I have the same story as others about being messed about many years ago by the NHS appointments service resulting in probable vision loss. My additional piece of advice would be to try contacting the glaucoma consultants’ secretaries with your concerns. They have a direct line to the consultants and are, in my experience, very helpful.

[PeterRabbit62 in reply to Eahldt]

I am sorry to hear that you having all these problems, I have the some problems with delayed appointments myself, I was supposed to see my opthalmologist in December last year and now it maybe April or even in May, nearly a year since I last saw one, I have seen my local opticians and he did a pressures test and told mine were 19 which is ok and that I need cataract surgery on my right eye so he has referred me for that. I live in Wales in Llandrindod Wells in Powys and attend a small eye clinic at my local hospital, the opthalmologist come from across the border in England Hereford which is our nearest eye hospital, I to used Ganfort have done for years, I also used Brinzolamide and Brimonodine twice a day, I was using Simzbrina until both of my local pharmacists failed to get it. I am afraid I have a right good argument with the appointment centre last time, so I am hoping that I managed to get an appointment soon. Before the pandemic I did not see a opthalmologist just their assistant, who was not an Opthalmologist only a opticians working with them, now they have changed the system and during in the pandemic and now I do see an opthalmologist and go through the whole process of having a scan and field vision test which I hate, so frustrating they are, trouble is I never see the same opthalmologist all the time, like when I was first diagnosed, as I say hoping to see one in April hope your appointment goes well best wishes.

[Eahldt in reply to PeterRabbit62]

I live in Halifax, a town in West Yorkshire. My local hospital does have glaucoma consultants and, since I was first diagnosed about 15 years ago, I’ve had reasonable continuity in terms of seeing the same people. For the past two years I had a brilliant consultant but unfortunately he left. I then saw someone who keeps being persuaded back out of retirement. I don’t know who I’ll see next time. My constant at the moment is the medical secretary. When I don’t get an appointment at the time specified, which always happens, I ring her and she arranges one for me. Obviously I don’t know how long this will work for but I learnt after my experiences a few years ago that you have to be proactive. I’m pleased to hear you took on the appointments service and hope this will have the result you need.

[swanlady123]

I totally agree and sympathise with you -eyes are so very vital to each of us and its scary when you get conflicting or no real info & seeing junior people all the time. Does not give you confidence anymore in the system. WE are the only ones important to US -once been seen by them youre totally forgotten about - just another- cept our eyes are ours and so vital.

It is terrible to be so vulnerable these days. My heart goes out to you & you are defo not unrealistic in expectations.

[Olalflel in reply to swanlady123]

Thank you all for your support and helpful advice.

[praying4cure]

You absolutely do not have unrealistic expectations. Always be your own advocate when it comes to preserving your vision. As frankthebank says, never take no for an answer. I'm not familiar with the health system in the UK, but I've been fortunate here in the US to have an insurance company that allows me to seek out and find specialized care from glaucoma specialists at top institutions in the country. Had I relied on the eye care available in my small town, I surely would have been blind by now. I think if I were in the UK and had the means to follow through, I might try contacting one of these institutions conducting glaucoma clinical trials to see if someone there might point me in the direction of a top glaucoma doc who is seeing new patients. Best of luck in your search for immediate and effective care. (A wealth of glaucoma information can be found at: glaucoma.org)

[praying4cure in reply to praying4cure]

I forgot to add the link to UK glaucoma clinical trials: glaucoma.uk/research-hub/ta...

[Olalflel in reply to praying4cure]

Thank you.

[tkhach44]

What were you told when initially they wanted to change your drops that you were comfortable using them for years.