Has your vision been affected by delays in treatment due to COVID-19?

[Elena_GlaucomaUK]

Hello everyone, we are looking for people who have experienced life-changing consequences to their vision due to delays in diagnosis/treatment caused by the pandemic. If you would like to share your story with us and help us to raise awareness of the impact that these delays have had on people living with glaucoma, we’d love to hear from you. Please email us at [e-mail] with a brief outline of your experiences and we will be in touch. Thank you.

[muddledme]

Hello Elena,

Although I have not had any life changing consequences to my eyes during Covid, at least I am not aware yet of any more subtle changes.

I am sure I am not alone by saying that the relentless rush in OPD, the long delays in follow up appointments, even long delays with the DVLA makes it all seem like a battle.

Long before Covid the system was very busy, I became used to always phoning 6 weeks before an appointment was due.....otherwise several appointments were very late indeed.

Obtaining medication is another worry, also longstanding.

The DVLA wrote to me in July and I finally recently had a reply and I am going to have the F.O.V test today.

Their phone number is always engaged and because they have spelt my name wrong they do not recognise me on line.

I certainly do not blame the NHS as I know how hard they work, but I do blame the system.

Why are we doing bariatric surgery instead of encouraging weight loss? Especially as obesity is so strongly linked to Covid.

There are also many sports injury operations which could be covered with private insurance and numerous other self inflicted diseases all treated on the NHS.

Just having Glaucoma is always a worry but all the delays and uncertanties seem to be unrelenting .

Following surgery I have not been seen since April ,should have been seen this month but the virtual appointment has now been delayed again until December with a 6 week wait for the results.

Sorry sounds like a big moan, but you wanted to know what was happening. It is so good to know that Glaucoma UK is always such a help. Thank you .

Best wishes to you all

[Elena_GlaucomaUK in reply to muddledme]

Hi muddledme,

Thank you so much for your reply. I can certainly understand your frustrations with all the appointment delays. I can imagine that all the uncertainty just adds to the worry you say you already have about living with glaucoma.

If you'd be interested in raising awareness of the impact that these delays have had on you by being a case study and sharing your story then please email us at [e-mail], we'd love to hear from you.

In the meantime, I hope everything goes well with your DVLA sight test today. If you feel like you need any support or advice, please don't hesitate to reach out to our lovely helpline team on 01233 64 81 70 or via email [e-mail]. We are always here to help if you need us.

With all best wishes,

Elena

[Redshoes15]

Hello ElenaMy out patient check was delayed by 6 months due to Covid, so it was a year by the time I was finally seen. At this appointment my pressures had crept up to 23 and 27 and the doctors were panicking as I had sustained damage to my vision on both sides (right eye worse than left). They signed me up for a trabeculectomy within a month and increased my drops in the other eye. I was absolutely devastated and feel that if I had been seen sooner my optic nerves would not have got damaged. I have had glaucoma controlled by drops for 17 years.

Best wishes

[Elena_GlaucomaUK in reply to Redshoes15]

Hi Redshoes15,

Many thanks for your reply, I’m so sorry to hear that your vision has been impacted by these delays, I can understand how devastating this must be. I hope the treatment they have prescribed will be effective but can imagine how upset you feel that damage could have been prevented had you been seen earlier.

If you’d like to share your story and help us raise awareness of the severe impact that COVID-19 delays have had on people’s eye health by becoming a case study for us, we’d love to hear from you. Please get in touch by emailing us at [e-mail]

In the meantime, if you have any concerns about your vision or the treatment you’re receiving and would like some support, please don’t hesitate to contact our helpline team on 01233 64 81 70.

With all my best wishes,

Elena

[Beecalmed]

Hi Elena! Obviously I can’t tell whether my eyesight has actually been affected by COVID-19 delays but what I can say is… I last saw my consultant in Sep 2019 and I haven’t seen him in person since. I should have been seen at 6 month intervals but each time that slipped to 9-10 mths.

My eye sight in my opinion started to further deteriorate late last year but seems only to have been picked up until this July in a virtual clinic. I already have sight loss so not being able to see or speak directly to a consultant whilst I felt my eyesight deteriorated caused huge anxiety which I believe cannot have been good my IOPs.

In this time I also developed an allergic reaction to my drops and I had to contact my ophthalmologist who wrote to my consultant to request a new drop. The copy of the letter issued to my GP to change my prescription never reached me (lost in post?) and went astray, however no one at the GP surgery contacted me to change the prescription. It was 10 months before I attended a virtual clinic and the oversight was discovered. I’m not sure what damage that drop caused over those 10 months but my eyes were sore and irritated through that time and I was miserable with discomfort.

Ive just had SLT and have still not had a face to face with my consultant to discuss my glaucoma progression.

I was having disc bleeds for the previous two years and no one can tell me if I’m still having them or if I may have had them and they’ve been missed in the long gap between clinics.

So do I think the delays due to COVID-19 affected my eyes? Yes I think it probably did.

And thank you for asking this question, for Glaucoma Uk support and for providing this forum where I found my glaucoma buddy.

[Beecalmed]

Actually…. I missed two off. My prescribed preservative eye drops supply dried up earlier this year. Covid? Brexit? No one knew why for sure. My GP pharmacy said it was out of stock everywhere. My consultant’s secretary confirmed this was the case. I eventually after numerous phone calls found a different but more expensive brand but there was some worry this would also run out and I spent days fearing I would run out of drops and have to return to the drops that had caused me such problems originally. In addition I recently had SLT and was prescribed anti inflammatory drops post procedure. After my op my husband and eye drove round and tried several chemists and spent an afternoon ringing round several others as the drop was not available anywhere. We managed to get the last bottle in a chemist. So stressful after a stressful morning at hospital and when I should have been sitting resting. Is this COVID or brexit delays?

[Elena_GlaucomaUK in reply to Beecalmed]

Hi Beecalmed,

Thank you so much for your reply. I'm so sorry to read about what you've experienced - not seeing your consultant in person for over two years must feel incredibly frustrating. The fact that you felt your sight was deteriorating as well as the discomfort caused by your allergic reaction to the drops must've no doubt been very distressing as well.

The struggle with trying to source your new drops was certainly something I'm sure you could have done without. Unfortunately I wouldn't be able to confirm why this shortage has occurred, but I'm glad you were finally able to find them and I have everything crossed that you don't experience the same issue again.

If you would like to share your story by becoming a case study for us, and help us to raise awareness of the issues people are experiencing due to COVID-19 delays, we'd love to hear from you. Please get in touch by emailing [e-mail] so that we can send you our case study consent form.

I'm so glad that you've found this forum helpful and have also found a glaucoma buddy. If ever you would like to speak to anyone about the difficulties you've faced, please remember that our helpline is always on hand to offer advice and support. Our lines are open Monday to Friday 9.30am to 5.00pm, or else you can email our lovely helpline team at [e-mail].

With all my best wishes,

Elena