Gareth...
They do have a newsletter and have already asked if I want to submit some info, so I could organise that. The AGM does not have stands - our various optical events do.. but they have to be paid for. However, the AOP itself has stands at these events as do other vision related organisations. As these come up, I could see what I could do about getting info onto relevant stands.
Thorny questions about expert advice...
Moderators: Anne Klepacz, John Smith, Sweet
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
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Sweet
- Committee
- Posts: 2240
- Joined: Sun 10 Apr 2005 11:22 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: London / South Wales
Ok now i AM confused! LOL!!
Am sitting in the middle of this and talking to all of those who have posted here about it. I do understand that profits are taken from the KC booklet, but i didn't think it was that much? Did i get it wrong that it is free to all those who register as a member as we get it with all the KC details, and that we only have to pay £2 for another one if we want one? Also that we only kindly ask for a donation not in paying for the booklet in the first place.
I am a regular poster and i do fall past the mild KC point as i have had a graft and tried way too many lenses to convince myself that there isn't a problem with too much sick leave thrown in for good measure! As Gareth has already asked, why doesn't my sister post? Because she doesn't think she has a problem, and feels left out because she HASN'T had a graft and manages very well with both eyes with RGP lenses. This forum IS aimed towards those who have major problems and indeed most of us have had surgery, and many admit that it was because of major problems that they felt a need to look for info and found us in the first place!
This is why i think that a separate forum where we can talk about grafts would be useful, as it wouldn't alienate and put new members off complaining. To them being newly diagnosed and having to try a lens for the first time is a major problem, whereas to some we are dealing with rejection risks and the whole dilemma of stitches post graft. New members have mailed me saying that they think their problem is totally irrelevant and not worthy of being here. Most of us have been here long enough to have past the basic lens problems and so we don't post much about this which would be useful for a new member. The only way that they can really get help is if they are brave and post about something themselves!
This is what Lynn is trying to change i think, as she sees a number of new people with KC who are totally lost as to where to go for help. The list on KC optometrists i think can be taken two ways. As members here we only seem to be posting about private optometrists and not mentioning those working in the NHS. Where do we draw the line? Maybe we don't put NHS ones on the list as there is very little continuity unless we are talking about Ken, whereas if you see a private one you will get to know them better.
Also private optometrists with an interest in KC will see more patients with this and be better able to provide the best treatment on our condition. This is where having the list takes on a different meaning, as then we are providing details knowing that the optometrists on it are well able to fit lenses for KC. I think that it would be brilliant if we could make the list much bigger, but it would need more KC patients across the UK to add their optometrists to the list!!
Ok ... that is my two pennies worth! Am off now to finish working in resus, because it is a really busy night so i can't stop to chat!!! LMAO!!!
Sweet X x X
Am sitting in the middle of this and talking to all of those who have posted here about it. I do understand that profits are taken from the KC booklet, but i didn't think it was that much? Did i get it wrong that it is free to all those who register as a member as we get it with all the KC details, and that we only have to pay £2 for another one if we want one? Also that we only kindly ask for a donation not in paying for the booklet in the first place.
I am a regular poster and i do fall past the mild KC point as i have had a graft and tried way too many lenses to convince myself that there isn't a problem with too much sick leave thrown in for good measure! As Gareth has already asked, why doesn't my sister post? Because she doesn't think she has a problem, and feels left out because she HASN'T had a graft and manages very well with both eyes with RGP lenses. This forum IS aimed towards those who have major problems and indeed most of us have had surgery, and many admit that it was because of major problems that they felt a need to look for info and found us in the first place!
This is why i think that a separate forum where we can talk about grafts would be useful, as it wouldn't alienate and put new members off complaining. To them being newly diagnosed and having to try a lens for the first time is a major problem, whereas to some we are dealing with rejection risks and the whole dilemma of stitches post graft. New members have mailed me saying that they think their problem is totally irrelevant and not worthy of being here. Most of us have been here long enough to have past the basic lens problems and so we don't post much about this which would be useful for a new member. The only way that they can really get help is if they are brave and post about something themselves!
This is what Lynn is trying to change i think, as she sees a number of new people with KC who are totally lost as to where to go for help. The list on KC optometrists i think can be taken two ways. As members here we only seem to be posting about private optometrists and not mentioning those working in the NHS. Where do we draw the line? Maybe we don't put NHS ones on the list as there is very little continuity unless we are talking about Ken, whereas if you see a private one you will get to know them better.
Also private optometrists with an interest in KC will see more patients with this and be better able to provide the best treatment on our condition. This is where having the list takes on a different meaning, as then we are providing details knowing that the optometrists on it are well able to fit lenses for KC. I think that it would be brilliant if we could make the list much bigger, but it would need more KC patients across the UK to add their optometrists to the list!!
Ok ... that is my two pennies worth! Am off now to finish working in resus, because it is a really busy night so i can't stop to chat!!! LMAO!!!
Sweet X x X
Sweet X x X
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Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
Forme Fruste Keratoconus is a very mild or early case of Keratoconus. It can progress and become more aggressive. If complicated by LASIK treatment it can progress quickly as the thinned cornea is further thinned by Laser Surgery.
I guess everybody here went through such a stage, but was probably undiagnosed at the time.
My condition did not progress rapidly. I was 53 when I had my first graft. I am now 56 and waiting for my second graft.
The board does distinguish optometrists, so that anyone trawling through the strings can see at a glance when it is a 'professional' who is posting. At least one optometrist seems to give his business details in his sig line.
I have never known any major 'poster' to advise surgery as an early option. Indeed, my own impression is that we tend to the opposite extreme advising the exploration of the full range of lenses before going ahead with a graft.
It is not uncommon for 'newbies' to introduce themselves after their first transplant.
I do urge you, Lynn, to consider the possibility that people with FFKC may be less fragile than you imagine, and that people with aggressive KC may need to be able to sound off in ways that you seem to think 'alarming'.
John, I really do think that this string does not warrant its sticky status, but that it ought to be allowed to ‘float free’ among the other strings.
Andrew
I guess everybody here went through such a stage, but was probably undiagnosed at the time.
My condition did not progress rapidly. I was 53 when I had my first graft. I am now 56 and waiting for my second graft.
The board does distinguish optometrists, so that anyone trawling through the strings can see at a glance when it is a 'professional' who is posting. At least one optometrist seems to give his business details in his sig line.
I have never known any major 'poster' to advise surgery as an early option. Indeed, my own impression is that we tend to the opposite extreme advising the exploration of the full range of lenses before going ahead with a graft.
It is not uncommon for 'newbies' to introduce themselves after their first transplant.
I do urge you, Lynn, to consider the possibility that people with FFKC may be less fragile than you imagine, and that people with aggressive KC may need to be able to sound off in ways that you seem to think 'alarming'.
John, I really do think that this string does not warrant its sticky status, but that it ought to be allowed to ‘float free’ among the other strings.
Andrew
Andrew MacLean
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Just to clarify about the lists.
I was discussing with the AOP about providing lists of optometrists that provide specialised services in general, not just KC. Professionals who say, work with dyslexics or provide specialised colour vision testing and so on. KC would be a part of this and would include those who particularly specialise in this field. We are talking private optoms here, in the community, not those working in hospitals.
This list would be on the AOP website and would therefore be for optometists and the general public. Optoms could then refer patients to them as well, if they came across someone they thought needed more expert advice.
Of course, this is not a guarantee any particular person will get on with a particular practitioner! This will just give a starting point for people who are searching around for optoms that at least DO work in a particular area.
This will have no impact at all on the lists posted on this site, it will simply be another source of information.
Sorry if there was any confusion there!
I was discussing with the AOP about providing lists of optometrists that provide specialised services in general, not just KC. Professionals who say, work with dyslexics or provide specialised colour vision testing and so on. KC would be a part of this and would include those who particularly specialise in this field. We are talking private optoms here, in the community, not those working in hospitals.
This list would be on the AOP website and would therefore be for optometists and the general public. Optoms could then refer patients to them as well, if they came across someone they thought needed more expert advice.
Of course, this is not a guarantee any particular person will get on with a particular practitioner! This will just give a starting point for people who are searching around for optoms that at least DO work in a particular area.
This will have no impact at all on the lists posted on this site, it will simply be another source of information.
Sorry if there was any confusion there!
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Sweet; I must disagree, I feel the forum and the support group are aimed at all levels of KC. It is jsut that the more extreme cases still come to the site.
As far as private practitioners go for lens fitting, I have only seen one and that was in the late 80's as he suspected I had KC and referred me through my GP to the hospital. Then the hospital had no lens fitting facility so he then fitted my lenses through the NHS.
The optician that referred me to the hospital again in 2004 no longer see's me except when he is at the hospital as all my tests are on the NHS now.
To perhaps avoid confusion, perhaps the list we have compiled in the members area or opticians nees to list if they do lens fitting on the NHS or privatly.
A list of opticians with an interest in KC is a good one as whenever I have moved I have had to spend time interviewing the optom to guage their knowledge of KC before letting them go near my eyes. Such a list would be of great help in the future.
Continuity through the NHS system I think again enetrs the post code lottery. I always see the same opthalmologist (unless I have to visit casualty) and I always see the same optomotrist for regular checks, if there is a problem I will sometines see another, but that is because each has their specialist area in lenses so there is a handover where I am involved with their discussions.
As far as private practitioners go for lens fitting, I have only seen one and that was in the late 80's as he suspected I had KC and referred me through my GP to the hospital. Then the hospital had no lens fitting facility so he then fitted my lenses through the NHS.
The optician that referred me to the hospital again in 2004 no longer see's me except when he is at the hospital as all my tests are on the NHS now.
To perhaps avoid confusion, perhaps the list we have compiled in the members area or opticians nees to list if they do lens fitting on the NHS or privatly.
A list of opticians with an interest in KC is a good one as whenever I have moved I have had to spend time interviewing the optom to guage their knowledge of KC before letting them go near my eyes. Such a list would be of great help in the future.
Continuity through the NHS system I think again enetrs the post code lottery. I always see the same opthalmologist (unless I have to visit casualty) and I always see the same optomotrist for regular checks, if there is a problem I will sometines see another, but that is because each has their specialist area in lenses so there is a handover where I am involved with their discussions.
Gareth
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Sweet
- Committee
- Posts: 2240
- Joined: Sun 10 Apr 2005 11:22 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: London / South Wales
Ok ... the forum IS aimed at all stages of KC i didn't disagree with that! I'm just saying that most of the regular posters are at a later stage and have probably had a graft or are seriously thinking on it. This is good as they would obviously be able to advise what things they have tried, but it may be slightly off putting to new members.
Andrew, this post never started as a sticky but was added by John as Lynn asked what opinions people had etc, so he thought it a good idea to stick it so that everyone would have a chance to reply. As we post so much it would have gotten lost if it was left to float free!!
Sweet X x X
Andrew, this post never started as a sticky but was added by John as Lynn asked what opinions people had etc, so he thought it a good idea to stick it so that everyone would have a chance to reply. As we post so much it would have gotten lost if it was left to float free!!
Sweet X x X
Sweet X x X
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Sweet;
This is what made me disagree with you
Good to know you agree with me now
This is what made me disagree with you
This forum IS aimed towards those who have major problems and indeed most of us have had surgery, and many admit that it was because of major problems that they felt a need to look for info and found us in the first place!
Good to know you agree with me now
Gareth
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Sweet
- Committee
- Posts: 2240
- Joined: Sun 10 Apr 2005 11:22 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: London / South Wales
LMAO!!! Gareth you STILL owe me a drink regardless of whether we agree or not! And i never take anything from you personally! Hehehe!!!
I was just saying what a lot of people here have said when joining, as most people have talked in their first few posts about being in a bad place with KC and needing help. These are not mild cases. This forum was never aimed at those having a graft or dealing with major lens problems but most of the posts cover this, so i was just mentioning what some new members have said to me via mail in their reluctance to post.
Sweet X x X
Hehehe!!!
I was just saying what a lot of people here have said when joining, as most people have talked in their first few posts about being in a bad place with KC and needing help. These are not mild cases. This forum was never aimed at those having a graft or dealing with major lens problems but most of the posts cover this, so i was just mentioning what some new members have said to me via mail in their reluctance to post.
Sweet X x X
Sweet X x X
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