Update on cancelled surgery

[Efabear]

Thank you to everybody who sent their best wishes, advise and shared their stories. I determined to face whatever this condition threw at me positively when I was diagnosed, but think, what with my severe allergic reaction and this I hit crisis point and collapsed under the strain. I have spoken to the Glaucoma UK helpline, RNIB, my GP and a fabulously helpful Eye Hospital Liason Nurse who talked me through things, apologised for gaps in communication and made many helpful suggestions as well as referring me to visual impairment services. She's going to look into the reasons my surgery was cancelled, but it looks like this may be for clinical reasons. I'm having cataract surgery and GSL which apparently is not common, so it may be my consultant needs to perform surgery and he's away. Previous date was shortly after my allergic reaction and they may not have wanted to risk operate if my eyes hadn't fully healed. Definitely room for improvement in their comms me thinks. I'd definitely recommend anyone finding the self hitting a wall with this condition, accessing the support that's out there and in particular the Eye Hospital Liaison team. I feel so much more reassured that I now have someone walking this path with me and that is making a world of difference emotionally. The NHS is well past breaking point and that's really tough especially when we are vulnerable, but in my experience the staff are working their hardest to do the best they can for us.

[muddledme]

So pleased to hear that at least you now have had things explained. As you say the communications are often poor, especially if the system is so busy.

I have often felt it is almost like a battle trying to get things sorted.

Best wishes

[Efabear in reply to muddledme]

Thank you. I agree that it feels like a battle at times I am not sure I have the energy nor want to have to fight for what is needed anymore. Living with glaucoma is proving exhausting enough. Thank you for putting the wheels in motion to raise awareness via the media. The hidden effects of lockdown need to be made public, as they are far reaching and this isn't a disease that is ever safe to leave undiagnosed or treated. It made me really cross when the chief medical officer got his knighthood, when in essence he was instrumental in shutting the NHS to anything but COVID. As a direct consequence so many people have suffered untold distress and heartache. Sadly they haven't thought to publish data on how many people died an otherwise preventative death, for reasons other than COVID, nor who now have to live with a significant disability and loss of independence.

[Hidden in reply to Efabear]

I think one of the problems with ophthalmologists, and probably surgeons of all sorts, is that they don't see you as a 'person' but ( in the case of ophthalmologists) as an 'eye'.Their communication skills are appalling and they seem quite surprised when confronted.

I see a different person, sometimes more than one, every time I go to clinic. Last time when I was finally called in the young man saw no need to introduce himself and was taken aback and then a little sheepish when I asked him his name. I then wanted to know if he was a doctor..... we are often seen by different disciplines within the clinic..... again he was surprised that I wanted to know. But it did all break the ice somewhat!

It reminded me of years ago lying half clothed in a room in obstetrics out patients when a young man swanned in and told me to put my legs up!. When I asked who he was he was quite put out..... he could have been a porter or something for all I knew.

[Efabear in reply to Hidden]

I agree about the problem of seeing different people each time. Coupled with the sheer concentration they put in to examining one's eyes it feels difficult to interrupt with questions☺️! In fact once I did ask something and she asked if she could finish I putting data first, then I forgot the question 😂🙄. On the other hand whilst comms have been lacking big time, equally I've be really glad they were there, as I've definitely earned my season ticket to my eye clinic in the past 6 months. They have always responded and taken time to do a thorough examination and come up with a treatment plan

[Hidden in reply to Efabear]

I'm glad you can see the positives because you've had a bad time.I had the op last Friday and will report back here after this Friday's follow up.

[Efabear in reply to Hidden]

Will be nice to hear how you've got on. X

[Stairs10 in reply to Hidden]

I totally agree that we're very often seen as an eye and not the person around the eye.