GENERAL MEETING 20th October at 11.00am
THE BOARDROOM MOORFIELDS EYE HOSPITAL LONDON
REFRESHMENTS PROVIDED
COME ALONG TO DISCUSS HOW TO IMPROVE THE SERVICE AT THE
MOORFIELDS CLINIC
Making a difference
Chair Mike Oliver writesÂ… The Group has been asked by Moorfields to comment on how the hospital eye service is perceived by KC patients and how the service can be improved.This is a real opportunity to contribute to the debate on change and modernisation within the NHS. So come along to the next members meeting on Saturday 20th October at 11.00am in the Moorfields boardroom and have your say.The comments made will be fed into the Group's response and will hopefully be used to improve care at other eye clinic around the country
Quicktopic posts: Oct 2001
Moderators: Anne Klepacz, John Smith, Sweet
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Tony Stigle Webperson
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John Smith
I've just found this group, and thought I'd share my story:
I've been diagnosed with KC for about 5 years now. The first year was in ignorance though, as Boots were attempting to correct my vision with RGP lenses. Eventually (about a year later), they gave up, told me I needed a transplant and got my GP to refer me to a consultant.
The consultant told me to find a better optician(!) and suggested I saw a fabulous optician in my area. They've been great, and I've been on Rose K RGP lenses there for a while. I've been getting replacement left lenses (I'm effectively blind in the right eye with KC) every 3-4 weeks now since Easter, but now even the great optician has given up and sent me back to the consultant.
This time, the consulant agreed with the optician, but told me that although I've "not run the gamut of weird and wonderful contact lenses", I'm not suitable for them as both my corneas are scarred; so she's recommending a graft in both eyes, worst first.
She doesn't feel that she does enough graft ops to do a good job on me, so she's going to refer me to one of her colleagues.
Does anyone have any advice on what I should be asking the new consultant?
thanks,
John
I've been diagnosed with KC for about 5 years now. The first year was in ignorance though, as Boots were attempting to correct my vision with RGP lenses. Eventually (about a year later), they gave up, told me I needed a transplant and got my GP to refer me to a consultant.
The consultant told me to find a better optician(!) and suggested I saw a fabulous optician in my area. They've been great, and I've been on Rose K RGP lenses there for a while. I've been getting replacement left lenses (I'm effectively blind in the right eye with KC) every 3-4 weeks now since Easter, but now even the great optician has given up and sent me back to the consultant.
This time, the consulant agreed with the optician, but told me that although I've "not run the gamut of weird and wonderful contact lenses", I'm not suitable for them as both my corneas are scarred; so she's recommending a graft in both eyes, worst first.
She doesn't feel that she does enough graft ops to do a good job on me, so she's going to refer me to one of her colleagues.
Does anyone have any advice on what I should be asking the new consultant?
thanks,
John
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June
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Lawrence Freeman
Hi guys!
i haven't been to this board for ages now, and I wish I had come back earlier. It's still as informative as ever and so encouraging to others who have recently been told that they have the condition.
Reading through some of the posts here, I think I can consider myself lucky compared to some of you, as I do not suffer from any other eye-related ailments other than KC, although that is enough! The thought of ulcers and mucus just makes me want to give you all a big hug!
Since my last visit to the site, I think that the vision in my eyes has become a little worse and the lenses given to me approx 5 months ago don't seem to fit as well. For the last two or three months, the right lens (which has the worst KC) seems to pop out two or three times a day. It's pretty annoying when you're on the train, coming back from work and it lands on your book!
I go back to the Royal Victoria Infirmary, here in Newcastle, in a bout three weeks, so 'll be asking about different types of lenses, even the scary Sclerals. If I get as much comfort as I can, it's got to be worth a try, hasn't it? I'll try and visit more regularly and offer what I can to you all.
And remember to keep smiling,
Lawrence.
i haven't been to this board for ages now, and I wish I had come back earlier. It's still as informative as ever and so encouraging to others who have recently been told that they have the condition.
Reading through some of the posts here, I think I can consider myself lucky compared to some of you, as I do not suffer from any other eye-related ailments other than KC, although that is enough! The thought of ulcers and mucus just makes me want to give you all a big hug!
Since my last visit to the site, I think that the vision in my eyes has become a little worse and the lenses given to me approx 5 months ago don't seem to fit as well. For the last two or three months, the right lens (which has the worst KC) seems to pop out two or three times a day. It's pretty annoying when you're on the train, coming back from work and it lands on your book!
I go back to the Royal Victoria Infirmary, here in Newcastle, in a bout three weeks, so 'll be asking about different types of lenses, even the scary Sclerals. If I get as much comfort as I can, it's got to be worth a try, hasn't it? I'll try and visit more regularly and offer what I can to you all.
And remember to keep smiling,
Lawrence.
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Jacqueline Cheetham
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Carl Raven
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