Another dismal day at the eye hospital - Glaucoma UK

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Another dismal day at the eye hospital

Anonoms profile image
20 Replies

Accompanied spouse to hospital. Sat next to another who pulled out appointment letter for their spouse and one for a completely unrelated person sent to them by the hospital. Another administrative failure. Just like the one that left my partner under medicated and resulted in further progression. The computer system had failed so normal records were not available. Pressures had gone up in newly operated eye and in previously operated eye. Had not prepared for well behaved eye to kick off so had not been worrying about that. But busy consultant started to say ..see you again in six months. I had to say but the pressure is higher than prior to the operation when the other consultant was concerned about field loss. Partner moans at me and consultant thinks we are just bickering. Then manage to remember date of virtual clinic so doctor can look up results doctor doesnt have in front of him. Thankfully doctor finally understands what I am trying to say and instead says that bit of information changes everything ... review in six weeks. So the advice is ..at points when your treatment changes keep a record that you hold and understand and take it your appointments. I know there is a little booklet but it would be brilliant to have a little excel spreadsheet because you can display a longer series of results graphically on that. So no holidays getting booked, fretting about family events that might be missed. I know thats trivial really but it just seeps under the skin.

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20 Replies
Tschuggen profile image
Tschuggen

Well done to you for being in control and assertive. (I use the Glaucoma App on my phone to record my eye pressures at each appointment. Really useful in spotting trends).

judetheobscure22 profile image
judetheobscure22 in reply toTschuggen

Could you tell me which app this is? I've never seen any mentioned either on here or in the various bits of information I've been sent and there are a few listed in the Google Play store.

Tschuggen profile image
Tschuggen in reply tojudetheobscure22

It is called MyGlaucoma. Hope it is of use.

sheelc profile image
sheelc

It's such a roller-coaster ride without hospital problems too, thank goodness you were on the ball. I keep a spreadsheet of every hospital visit for my eye condition and one for my husband's various ailments, it's been invaluable because my memory is a bit hit and miss!

PBX142 profile image
PBX142

Agree we have to be assertive and keep records of everything! When consultants ask about previous pressures and when the last surgery was etc etc I produce my spread sheet with dates, times, everything - and they find it useful. And it also lessens room for errors or misunderstandings. We have to take responsibility as much as possible because everything now is rush, rush, rush

Decorator123 profile image
Decorator123 in reply toPBX142

feel like at time you need to be your consultant secretary and administration paper work. And chase everything up yourself

Sorshup profile image
Sorshup

A grim tale - which i could only just read after my second night after second LE trab revision. It was only hearing the anaesthetist say to a colleague " this will take about an hour and threequaerteers" that I was made aware of how "heroic" it was giing to be ! In fact it took two hours, lying absolutely still! luclily I had been to the loo dhortly bfgorehand, that should have been a definite routine instruction, don't tou agree? Had first check yesterday, in again today. But I had forgotten how hazy the vision would be, and not likely to im[rove much over the next month or so. So to digress from the original subject of keeping notes and not being afraid to speak yp! And apologied for tipos !

Beecalmed profile image
Beecalmed

Yes I've has this experience too.

I also had a letter go astray.

I keep my own Glaucoma file (it's a large A4 file now after 6 yrs) and note down my pressures; any retinal bleeds and in fact anything that I think may be important in the future. I see a private specialist twice yearly because my 6 monthly checks are currently running at nearer a year. I ve stopped getting angry about it because stress isn't good for your health and I can't do more than I am.

On a slightly lighter note what we need is a celebrity with glaucoma! Now, if a celebrity publicly shares and suggests something that could improve treatment, it gets public support and tends to happen sooner. Anyone know any celebrities with glaucoma we can approach?

NewSh0e profile image
NewSh0e in reply toBeecalmed

I don’t but it’s an excellent idea. Maybe Trish and the team have a suggestion? I know glaucoma is more prevalent in African and Caribbean communities; surely there’s a high profile person or two who would stand up for us?

PBX142 profile image
PBX142 in reply toBeecalmed

Bono has glaucoma and 'came out' on Graham Norton's chat show a few years ago....

USME profile image
USME in reply toBeecalmed

Bono has glaucoma. Just recently Sir Elton John revealed he has lost most or nearly all of his vision. That was attributed to a virus however. God bless and good luck to all.

muddledme profile image
muddledme in reply toBeecalmed

Hello Beecalmed,

I believe Elton John has glaucoma, but not certain. You are right , it could make a lot of difference as it has with other conditions like the menopause and MND.

Yesterday I had a vitrectomy and removal of cataract , sadly because it was a Friday I had a check up with a Saturday duty Doctor today( not the surgeon) and discovered my IOP was 44, even after several attempts at needling and all morning in hospital. Now I am on Diamox tablets and Iopidine glaucoma drops and return tommorow with fingers crossed. It was worrying not to find the patient leaflet with the Diamox , incorrect information on the discharge letter....telling me to take the steroid drops for 3 months when it should be 3 weeks and other mistakes.

Luckily the young Dr today was very caring and listened and will contact the glaucoma surgeon , but I wonder why they book what they called a complicated case before the weekend.

As has been said patients have to really try and understand the treatment and watch carefully for inaccurate practise...probably because of so much demand especially with opthalmic disease.

Beecalmed profile image
Beecalmed in reply tomuddledme

So sorry to hear of your recent experience. 😕Hope things settle down very soon.

Yes I had a procedure on a Saturday. There were two errors I caught before things went awry. I was about to be prepped for a procedure on both eyes, luckily I spotted this and stopped them in time as I was only supposed to be having laser on one eye. Same junior doctor didn’t have my correct diagnosis. I had to direct him to my original diagnosis letter. He never apologised for his mistake. I reported him to my consultant.

On a Saturday I was also told post procedure that there were no drops available in the hospital pharmacy and my husband had to drive me around post procedure for hours trying to find a chemist open late on a Saturday that stocked these particular drops. It was very stressful thinking I might not be able to get any. 😕

muddledme profile image
muddledme in reply toBeecalmed

Yes, it all sounds familiar, especially running around after medication, yet stress is very bad for glaucoma ! I find it does shake my confidence with the NHS now.

Luckily I saw the really thorough young Greek doctor again today. He answered all my questions patiently explaining a lot, including future possible actions.

It really felt like a team approach to tackle the problem and reminded me of the recent webinar (Glaucoma UK) about research into shared decision making.

His change of treatment yesterday has worked well with low pressures now , he seemed as pleased as me .. I am still on Diamox which makes me feel like a wet blanket and what seems like numerous drops which take up so much time, although I know these will hopefully slowly dwindle. So maybe a Diamox free Christmas !

Perhaps people on social media know how to contact Elton John, I believe he has retired so will have time now. When the dust has settled post op I may try and contact him....his fan club ? Although I am not, but this could change !

Best wishes

Granny79 profile image
Granny79

I always photo copy my letters from the hospital and carry the copies with me. The originals are safely stored at home. I did this when my late husband who had many hospital appoints are finding we had to explain treatments and results every time he saw someone.

Anonoms profile image
Anonoms

Good point. Always provided you receive them. Which spouse didn't and neither did the person whose letter was sent to the person sitting next to me. I truly thought that sending a medical letter to someone else would be a very rare occurence.

Beecalmed profile image
Beecalmed

Anyone got a number for Elton? 😉

Seriously, for a common condition, statistically, glaucoma should have a lot more celebrities available! 🤔

Send fan mail to Elton John at eltonrequest@rocketentertainment.com or 1 Blythe Road London W14 0HG UK.

muddledme profile image
muddledme in reply toYoungontheOutside

Thank you so much, I will certainly do this.....perhaps other forum members would also e mail ?

Best wishes

YoungontheOutside profile image
YoungontheOutside in reply tomuddledme

I will. I suspect it will take more than two of us, so I hope that other people will join in and email Elton as well.

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