Rosemary,
I couldn't agree more about the appointments system at Moorfields! I once waited 7 hours in total, with all the aggravations you describe about lens time being exhausted and reading with one eye 3 inches from your face.
Once, after 5 hours I finally told the receptionist that I had to get some food and go to the loo, and please to listen for my name. Of course they called me just in that 5 mins I was away, so I waited a further half hour.
The other annoyance is being told to get there by 9.30 a.m. which means paying more on the train and struggling through the rush hour - (at that time unable to see properly) and then only being seen by the first person at 11.30 a.m. How many do they book in for 9.30 a.m.?
The only compensation is that I always feel I get very good treatment when I do finally get seen.
I now get my check-ups in Oxford, where I'm seen on time. The refreshments are also in the waiting room, so you can hear when you are called as well as distract yourself with a cuppa.
Please could the reps to the discussions with Moorfields discuss these issues with them.
Janet
Quicktopic posts: Nov 2002
Moderators: Anne Klepacz, John Smith, Sweet
-
umbilica@umbilical.demon.
Janet said:
I now get my check-ups in Oxford, where I'm seen on time. The
refreshments are also in the waiting room, so you can hear when you are called as well as distract yourself with a cuppa.
In that case, they've improved immeasurably since the days I was going there..... though come to think of it, that was over 20
years ago! There was a lot of waiting about then, and unhelpful reception staff, and those silly cards with blue stripes on
which they always wanted to see - and then gave me a new one
anyway; some of mine had the wrong number on, so I'd established which was the right one and written it in my diary and brought
that not the (wrong) card, and they treated me like an idiot two year old!!
I once even tried to see whether it would get me seen any
quicker if I sat in the middle of the waiting room surrounded by screaming brats pointedly reading Gay News in front of their
mothers.... not even that seemed to have any effect, though.
Is Tony Bron still in charge there? - and is it still in the Old Radcliffe in the Woodstock Road, or have they moved the Eye
Hospital out to JR2 now?
I remember seeing - well, hearing - Tony Bron when I was a
student and had hydropses (hydropes?) - one at the end of the
Christmas vacation in my first year, and the second, in the
other eye, just at the start of my Finals term. I sent him a
little letter through the university's internal "pigeon post"
(he held a university appointment not just an NHS one) saying,
basically, that the left eye has now done exactly what the right eye did before; should I come and see him? And when I got there he was telling someone that I was a very bright young lady who'd diagnosed myself.... not very difficult, I thought. But at least as my note had come through the pigeon post it actually got to
him rather than being sidelined into a pile for some
administrator to deal with tedious NHS patients....
.... or stuck in a file and forgotten for months... sigh!
Oh, the days of one's youth... !
Rosemary
--
Rosemary F. Johnson
I now get my check-ups in Oxford, where I'm seen on time. The
refreshments are also in the waiting room, so you can hear when you are called as well as distract yourself with a cuppa.
In that case, they've improved immeasurably since the days I was going there..... though come to think of it, that was over 20
years ago! There was a lot of waiting about then, and unhelpful reception staff, and those silly cards with blue stripes on
which they always wanted to see - and then gave me a new one
anyway; some of mine had the wrong number on, so I'd established which was the right one and written it in my diary and brought
that not the (wrong) card, and they treated me like an idiot two year old!!
I once even tried to see whether it would get me seen any
quicker if I sat in the middle of the waiting room surrounded by screaming brats pointedly reading Gay News in front of their
mothers.... not even that seemed to have any effect, though.
Is Tony Bron still in charge there? - and is it still in the Old Radcliffe in the Woodstock Road, or have they moved the Eye
Hospital out to JR2 now?
I remember seeing - well, hearing - Tony Bron when I was a
student and had hydropses (hydropes?) - one at the end of the
Christmas vacation in my first year, and the second, in the
other eye, just at the start of my Finals term. I sent him a
little letter through the university's internal "pigeon post"
(he held a university appointment not just an NHS one) saying,
basically, that the left eye has now done exactly what the right eye did before; should I come and see him? And when I got there he was telling someone that I was a very bright young lady who'd diagnosed myself.... not very difficult, I thought. But at least as my note had come through the pigeon post it actually got to
him rather than being sidelined into a pile for some
administrator to deal with tedious NHS patients....
.... or stuck in a file and forgotten for months... sigh!
Oh, the days of one's youth... !
Rosemary
--
Rosemary F. Johnson
-
Louise Pembroke
-
Paul Bines
I'm amazed it's taken me so long to actually look online for information on a condition I've had for some 15 years now! I'm glad to have found this discussion list.
To answer the person reporting leg problems - I had my second op about 4 weeks ago and didn't suffer the problems you mention. I did suffer from acute indigestion, but that was down to the anasthetic (and, probably, the huge amount of tea and toast I got whilst in hospital - one night)
As for Moorfields - they have ALWAYS been terrible. When I was first diagnosed with KC, I was referred to Moorfields and used to spend many a very boring hour waiting for my appointment. Luckily I worked in London at the time, and I had very understanding employers. After the graft (some 4-5 years after diagnosis) the sight was improved, but the appointments system wasn't - I found this both in the main clinic AND in the Contact LEns department. Eventially, I stopped going to Moorfields (I got passed onto the CL dept, when I had already exhibited an inability to wear contacts, ostensibly for a 'trial' - when I got normal hard lenses I baled out.
After some deterioration in the condition in my right eye (the left had the first graft) I was referred to Orsett and thence to Southend - and I have nothing but praise and kind words for them. Their appointments system works, in the main (the longest I've had to wait was 90 minutes, and that was because they had a couple of doctors out sick) The operation on my Right eye was at the beginning of October, I was in one night and the results were immediately noticable. If I hadn't, in the waiting list year, managed to get corneal ulcers on the Left eye graft, my eyesight would now be as near to normal as is possible without CL's! (hopefully a refgraft on the left eye in a year or so will fix the ulcer scarring)
Sorry, I've gone on a bit, but (like many first time posters here, whose messages I've read) it makes a change to be able to talk/write about my KC to people who actually know something about it! Everyone I talk to in general life thinks I'm actually talking about cataracts...
Au Res.,
Paul
To answer the person reporting leg problems - I had my second op about 4 weeks ago and didn't suffer the problems you mention. I did suffer from acute indigestion, but that was down to the anasthetic (and, probably, the huge amount of tea and toast I got whilst in hospital - one night)
As for Moorfields - they have ALWAYS been terrible. When I was first diagnosed with KC, I was referred to Moorfields and used to spend many a very boring hour waiting for my appointment. Luckily I worked in London at the time, and I had very understanding employers. After the graft (some 4-5 years after diagnosis) the sight was improved, but the appointments system wasn't - I found this both in the main clinic AND in the Contact LEns department. Eventially, I stopped going to Moorfields (I got passed onto the CL dept, when I had already exhibited an inability to wear contacts, ostensibly for a 'trial' - when I got normal hard lenses I baled out.
After some deterioration in the condition in my right eye (the left had the first graft) I was referred to Orsett and thence to Southend - and I have nothing but praise and kind words for them. Their appointments system works, in the main (the longest I've had to wait was 90 minutes, and that was because they had a couple of doctors out sick) The operation on my Right eye was at the beginning of October, I was in one night and the results were immediately noticable. If I hadn't, in the waiting list year, managed to get corneal ulcers on the Left eye graft, my eyesight would now be as near to normal as is possible without CL's! (hopefully a refgraft on the left eye in a year or so will fix the ulcer scarring)
Sorry, I've gone on a bit, but (like many first time posters here, whose messages I've read) it makes a change to be able to talk/write about my KC to people who actually know something about it! Everyone I talk to in general life thinks I'm actually talking about cataracts...
Au Res.,
Paul
-
John Smith
Sarah,
Poor you. Until yesterday I wouldn't have been able to help, but I was told yesterday that the steroid drops we're on could result in any number of things (in my case, I occasionally lose vision in my grafted eye for a few seconds when I stand up). I was asked specifically if I have any swelling of my feet or ankles, so I suppose it's possible that your problem is indeed caused by the steroids.
Make sure you let your consultant know, so that they can change the steroids to one that has different side effects.
Robert,
It's a shame that you've not had a checkup for so long. Are you still on eye drops? Mine had reduced to only 1 per day by about August, and would have stopped completely were it not for my rejection episode. I'm sure it's not a great idea to be on steroids for so long.
John.
Poor you. Until yesterday I wouldn't have been able to help, but I was told yesterday that the steroid drops we're on could result in any number of things (in my case, I occasionally lose vision in my grafted eye for a few seconds when I stand up). I was asked specifically if I have any swelling of my feet or ankles, so I suppose it's possible that your problem is indeed caused by the steroids.
Make sure you let your consultant know, so that they can change the steroids to one that has different side effects.
Robert,
It's a shame that you've not had a checkup for so long. Are you still on eye drops? Mine had reduced to only 1 per day by about August, and would have stopped completely were it not for my rejection episode. I'm sure it's not a great idea to be on steroids for so long.
John.
-
Janet Manning
About steroid side effects. Sure you are right John. After my second graft, my R eye pressure went to 46 in response to Maxidex drops. L eye had been fine on them. Huge panic in clinic ensued with diuretic tablet and glass of water thrust into my hand. Pressure decreased rapidly with use of diurectics. Maybe this would also solve the swollen leg problem - worth asking. After this I was prescribed another steroid drop, the name of which I cannot recall, other than it began with a 'V'. Was told it was new and very expensive, but didn't cause raised eye pressure.
Rosemary - Prof Bron was very helpful to me and saw me on time!!
Janet
Rosemary - Prof Bron was very helpful to me and saw me on time!!
Janet
-
Tony Stigle
Dear Paul ( Bines)
I am interested in your comment.. How did the search for KC sites work.. Did you find keratoconus group web site first.. then come to the discussion page.. or did your search just find the quick topic service.. Feed back will help me develop the site & continue with the onslaught of submitting the site to search engines...
Thanks
Tony Stigle. Web developer for the group.
http://www.keratoconus-group.org.uk
I am interested in your comment.. How did the search for KC sites work.. Did you find keratoconus group web site first.. then come to the discussion page.. or did your search just find the quick topic service.. Feed back will help me develop the site & continue with the onslaught of submitting the site to search engines...
Thanks
Tony Stigle. Web developer for the group.
http://www.keratoconus-group.org.uk
-
Paul Bines
-
Anne-Marie Penny
I was diagnosed when I was 12 (more than 20 years ago now!) and used contacts happily until the birth of my first child 4 years ago. My eye became very painful when wearing my lens - so I stopped. My optician wasn't overly helpful but last year I moved and found a brilliant guy in Dolland & Aichison.
He reckons I should have been sent for a corneal graft many years ago. What is the usual length of time between being diagnosed and having a graft?
He reckons I should have been sent for a corneal graft many years ago. What is the usual length of time between being diagnosed and having a graft?
-
Paul Bines
Return to “General Discussion Forum”
Who is online
Users browsing this forum: Google [Bot] and 46 guests