To me this makes me think we need a concerted effort to get the leaflets the support group has to as amny optoms and hospitals as possible.
The aim being to get the basic information and facts to the patient in a clear and concise manner. I think many patients respond to a Support Group Fact Sheet rather than a professional.
I would explain why I feel this way, but the sentances as I write them look wierd, so I hope you all understand regadless.
Perhaps this is another area the Support Group needs to establish stronger links and that is with the Optom Governing body (I am sure there is one or atleast a group most of you belong to). This is perhaps where theoptoms who post are best placed to help take this forward and may be at one of their confrences, someone from the comitte can stand up and say why we want optoms to be more aware and carry our information packs.
May be too the discalimer page needs an extra line to say that those who regularly post may not be representative of the KC community as a whole and new resiters get fed to the FAQ section first and that is ranked in order of questions new people to the condition usually ask.
What is KC?
Will I go blind?
What help is available?.......
The board is no where as horifying to new people than it was 18 months ago, but if you come to it a fresh I agree with Lynn, it still can be scary.
Thorny questions about expert advice...
Moderators: Anne Klepacz, John Smith, Sweet
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Michael P
- Champion
- Posts: 836
- Joined: Mon 30 May 2005 10:34 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: London
I am in full agreement with Lynn. As I have said previously when I first came across the forum it actually gave me quite a shock.
I had been living in total ignorance about my condition. I could see very well with a slight drop in vision in my right eye.
Yes some 30+ years ago I was told the condition could deteriorate and yes ultimately I could need a cornea graft. my sight had remained totally stable and then I found the forum. Wow I was in a state of shock by what i read.
I didn't go near the forum for a long time.
My sight has deteriorated in the past few years, more so in the past 12 months and this prompted me to come back and have another look at the forum.
I found the atmosphere far less gloomy and it has definitely given me both encouragement and comfort. I think a lot of balanced advice has been given and for the very first time i will have a few pertinent questions for the optometrist which could even result in some improved vision and if not at least i will know more bases have been covered.
So, yes we must be careful with what we say and how we say it, but essentially I think the regular contributors have responded in a sympathetic and very helpful manner to us newbies. Long may it continue
I had been living in total ignorance about my condition. I could see very well with a slight drop in vision in my right eye.
Yes some 30+ years ago I was told the condition could deteriorate and yes ultimately I could need a cornea graft. my sight had remained totally stable and then I found the forum. Wow I was in a state of shock by what i read.
I didn't go near the forum for a long time.
My sight has deteriorated in the past few years, more so in the past 12 months and this prompted me to come back and have another look at the forum.
I found the atmosphere far less gloomy and it has definitely given me both encouragement and comfort. I think a lot of balanced advice has been given and for the very first time i will have a few pertinent questions for the optometrist which could even result in some improved vision and if not at least i will know more bases have been covered.
So, yes we must be careful with what we say and how we say it, but essentially I think the regular contributors have responded in a sympathetic and very helpful manner to us newbies. Long may it continue
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Alison Fisher
- Forum Stalwart
- Posts: 334
- Joined: Sat 18 Mar 2006 12:56 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
- Location: Leicester
This thread has been on my mind a lot as well.
I know what I want to say but finding the right words is a different matter.
When I was diagnosed (around 1980/1) I really struggled to find any information about KC. The people I saw at the hospital were vague (and I thought somewhat evasive) and all I could find in books was a line or two saying what it was. So I went with the flow and followed the advice of my doctors, culminating in two very successful grafts.
When I found this forum my initial interpretation of what I was reading was that grafts were a very bad thing and don't really work which unsettled me a bit, but then I read more and began to understand why people were saying what they were. There's also a lot to take in about the different lenses and treatments that have been developed since I had my grafts - if you are coming to them for the first time the terminologies and concepts etc are more than a bit overwhelming.
The FAQ's and information sheets are exactly what I was missing in the early 1980's, but considering how reading some posts on the forum has had me questioning the choices I have made in the past about my own KC I'm rather glad it wasn't around then. Which I feel awful saying because I'm a big believer in support groups.
It is a very fine line between supporting someone and telling them what they should be doing. So much depends on how the person interprets what you are saying, and of course being internet based we don't know how the person our comments are directed at is taking what we are saying. We know next to nothing about them, whether they are going to take what we say as gospel or take it in the manner we intended. For us to make assumptions about them is just as dangerous as it is for them to make assumptions about us from the confident and apparently knowledgeable way we talk about KC. No two of us here have had the exact same 'journey' with our KC, and the new newly diagnosed member's experiences will no doubt also be very different, but they might not realise that yet which is something we need to remember.
It all comes down to common sense - on both sides, and of course keeping things in perspective, which isn't always easy to do.
I know what I want to say but finding the right words is a different matter.
When I was diagnosed (around 1980/1) I really struggled to find any information about KC. The people I saw at the hospital were vague (and I thought somewhat evasive) and all I could find in books was a line or two saying what it was. So I went with the flow and followed the advice of my doctors, culminating in two very successful grafts.
When I found this forum my initial interpretation of what I was reading was that grafts were a very bad thing and don't really work which unsettled me a bit, but then I read more and began to understand why people were saying what they were. There's also a lot to take in about the different lenses and treatments that have been developed since I had my grafts - if you are coming to them for the first time the terminologies and concepts etc are more than a bit overwhelming.
The FAQ's and information sheets are exactly what I was missing in the early 1980's, but considering how reading some posts on the forum has had me questioning the choices I have made in the past about my own KC I'm rather glad it wasn't around then. Which I feel awful saying because I'm a big believer in support groups.
It is a very fine line between supporting someone and telling them what they should be doing. So much depends on how the person interprets what you are saying, and of course being internet based we don't know how the person our comments are directed at is taking what we are saying. We know next to nothing about them, whether they are going to take what we say as gospel or take it in the manner we intended. For us to make assumptions about them is just as dangerous as it is for them to make assumptions about us from the confident and apparently knowledgeable way we talk about KC. No two of us here have had the exact same 'journey' with our KC, and the new newly diagnosed member's experiences will no doubt also be very different, but they might not realise that yet which is something we need to remember.
It all comes down to common sense - on both sides, and of course keeping things in perspective, which isn't always easy to do.
grafts in 1992 and 1996
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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
Sorry, I am still not too well and concentration is a bit of a problem, but it does seem to me that the great advantage of the forum is that it can, potentially, fill in the gaps left by our ophthalmologists or optometrists.
Twenty years ago I was encouraged to go ahead with a graft and given a tremendously up-beat assessment of the potential outcome. In those days I knew nothing of the forum, the internet was still in its infancy and information was not so readily available.
I could have given consent, but my consent would not have been informed. I went to the library and read everything I could find about Keratoconus. In truth, this did not amount to very much, but I did find troubling references to some potential problems post-graft.
Next time I saw my ophthalmologist, I challenged him with the information I had found, and asked why he had been so upbeat about the probable outcome of surgery.
Had the forum been available to me at the time, I'd have found it much easier to find answers to the many questions with which I emerged from the clinic at which a graft had first been proposed. The forum does not take away anything that ophthalmologists may say, it adds to the general environment of information within which each of us is responsible for decisions about our eye care.
There is another way in which the forum contributes to the environment in which we have to make decisions, and that is in relation to the advice we may be given by optometrists.
I am sure that Lynne knows that some of her colleagues are not expert at fitting lenses to KC eyes. It maybe that many optometrists are unaware of the range of lens types and materials that are available for Keratoconic eyes. It may also be that some optometrists are less aware than Lynne of the options for fitting lenses to eyes post graft.
Again the consumer needs the best information available before he or she can decide what action to take. Again, the forum takes nothing from the professional advice offered, but adds to it. Armed with information from the site consumers can go back to optometrists, or change optometrist in order to secure the best service and the most cogent advice available.
I think it was Val who said that we are each responsible for decisions about our care. This is undeniably the case, but in order to make informed decisions we need to have as much information, clearly expressed and directly given. The forum contributes to this process, helped me to make my decision about eventually accepting a graft and has helped me cope with the long recovery from surgery.
I hope that the forum will never stop equipping newly diagnosed KC'ers to go to their ophthalmologist or optometrist armed with a battery of questions. I also want to thank everybody here for the help that has been given to me over the years.
Andrew
Twenty years ago I was encouraged to go ahead with a graft and given a tremendously up-beat assessment of the potential outcome. In those days I knew nothing of the forum, the internet was still in its infancy and information was not so readily available.
I could have given consent, but my consent would not have been informed. I went to the library and read everything I could find about Keratoconus. In truth, this did not amount to very much, but I did find troubling references to some potential problems post-graft.
Next time I saw my ophthalmologist, I challenged him with the information I had found, and asked why he had been so upbeat about the probable outcome of surgery.
Had the forum been available to me at the time, I'd have found it much easier to find answers to the many questions with which I emerged from the clinic at which a graft had first been proposed. The forum does not take away anything that ophthalmologists may say, it adds to the general environment of information within which each of us is responsible for decisions about our eye care.
There is another way in which the forum contributes to the environment in which we have to make decisions, and that is in relation to the advice we may be given by optometrists.
I am sure that Lynne knows that some of her colleagues are not expert at fitting lenses to KC eyes. It maybe that many optometrists are unaware of the range of lens types and materials that are available for Keratoconic eyes. It may also be that some optometrists are less aware than Lynne of the options for fitting lenses to eyes post graft.
Again the consumer needs the best information available before he or she can decide what action to take. Again, the forum takes nothing from the professional advice offered, but adds to it. Armed with information from the site consumers can go back to optometrists, or change optometrist in order to secure the best service and the most cogent advice available.
I think it was Val who said that we are each responsible for decisions about our care. This is undeniably the case, but in order to make informed decisions we need to have as much information, clearly expressed and directly given. The forum contributes to this process, helped me to make my decision about eventually accepting a graft and has helped me cope with the long recovery from surgery.
I hope that the forum will never stop equipping newly diagnosed KC'ers to go to their ophthalmologist or optometrist armed with a battery of questions. I also want to thank everybody here for the help that has been given to me over the years.
Andrew
Andrew MacLean
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Thank you all for your replies to this thread which is really developing into an interesting discussion.
I would particularly like to thank Michael and Alison for saying what they did, as its difficult to actually say that this board can be unsettling for a newly diagnosed person.
Andrew, what I am saying here is the board is now now attracting people with very mild KC or indeed KC that may never progress and was only discovered through laser surgery screening. Many people are not as proactive as the more vocal members of the boards and often feel that their concerns pale into insignificance compared to people talking about losing their sight. They therefore never post. (I do actually talk to such people as a professional, so I am not making this up!)
However, their concerns are equally valid to them and it those silent members that I am worried about. They are the ones that do rely on their professionals to advise them and one has to be careful not to undermine trust here.
Patient/professional relationships are a partnership, not a battlefield! Many vocal members here have had bad experiences with their professionals.. which is often why they are here! There are many many more who do trust their professionals and do get excellent treatment and information.
Andrew, my interests here are trying to protect those with more fragile personalities from being overwhelmed with too much information too fast. In days gone by, yes, the professional would deal with this by being deliberately vague about details, as there is no point worryng a person until something needs to be worried about. It is a medical fact that some conditions (like MS) deteriorate rapidly when the patient becomes aware of the diagnosis, purely due to the stress induced.
Nowadays, we have no choice, the information is out there to be had in all its gory detail and many, frankly, cannot handle it. What I am asking for here is input and ideas on how to make this site more newbie friendly, partly as an extension on the work on FAQ etc.
It would be very, very helpful for any newbies, whatever their level of KC, to contribute to this discussion!
Lynn
I would particularly like to thank Michael and Alison for saying what they did, as its difficult to actually say that this board can be unsettling for a newly diagnosed person.
Andrew, what I am saying here is the board is now now attracting people with very mild KC or indeed KC that may never progress and was only discovered through laser surgery screening. Many people are not as proactive as the more vocal members of the boards and often feel that their concerns pale into insignificance compared to people talking about losing their sight. They therefore never post. (I do actually talk to such people as a professional, so I am not making this up!)
However, their concerns are equally valid to them and it those silent members that I am worried about. They are the ones that do rely on their professionals to advise them and one has to be careful not to undermine trust here.
Patient/professional relationships are a partnership, not a battlefield! Many vocal members here have had bad experiences with their professionals.. which is often why they are here! There are many many more who do trust their professionals and do get excellent treatment and information.
Andrew, my interests here are trying to protect those with more fragile personalities from being overwhelmed with too much information too fast. In days gone by, yes, the professional would deal with this by being deliberately vague about details, as there is no point worryng a person until something needs to be worried about. It is a medical fact that some conditions (like MS) deteriorate rapidly when the patient becomes aware of the diagnosis, purely due to the stress induced.
Nowadays, we have no choice, the information is out there to be had in all its gory detail and many, frankly, cannot handle it. What I am asking for here is input and ideas on how to make this site more newbie friendly, partly as an extension on the work on FAQ etc.
It would be very, very helpful for any newbies, whatever their level of KC, to contribute to this discussion!
Lynn
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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
Not sure that i can really add much here. I joined as many have done when i was in a very bad place with my eyesight. To me this was the last place to ask for some help, as i certainly didn't look for any information or support before, and when i first started posting i was almost blind.
I had loads of problems trying to get sclerals and be seen at Moorfields, so to me reading bad things here wasn't so depressing as it was where i was. At least i knew i was in the same place as others here, and i felt that it couldn't get any worse than not being able to see and being on long term sick. I didn't find any support anywhere else, couldn't get seen by anyone and just wanted some advice. I guess though that if i had come here before i had problems, when i had 15 years of trouble free lens wear it would have been totally different as i would have found a lot of posts stressful.
I think that this is why my twin sister doesn't read here, as maybe she does think that it is totally depressing and is not in a bad place to ask for help? Maybe things would change if things sadly got worse.
I personally think that we are very approachable for new members, but only if they post and let us know they are here! To those who read and never say anything things are harder, as they read very stressful stories and probably leave even more confused.
Maybe we do need somewhere on the site aimed just at new members, where we can make them feel welcome so that they will want to post if they have any questions. It would also be nice to add things about the forum members (we have already added the committee), but on how posts are counted etc and something about regular posters. Maybe we should add any members who are open to receiving pm's from those too scared to post? I know that i get quite a few pm's from new people, but do add that while i am happy to reply it is nice to have it on the forum as it will help everyone.
Also as it is the graft posts that are more stressful, maybe we should have a separate forum just for surgery posts? That way new members wouldn't get overwhelmed with the thoughts of a corneal graft, and those who were thinking on it would be prepared on what they were going to read BEFORE they saw the posts! Some with mild KC may not know that there is a chance they could need a graft at some point, we don't want to scare them just when they are asking what the condition is all about and what lenses are available etc.
Also having 1000 posts doesn't mean that you are going to know more than those who post less, or indeed say anything about you being able to help! But new members are more likely to aim questions at those with higher posts thinking that they are more able to help. John did stop the Chit chat forum from adding to our total though which has helped, as now the posts are only included from KC posts.
I think that the layout is much more user friendly and more welcoming to new people. You can find information quicker and post easily. We just need to remember that there are a lot of people who read but never reply, or say something only when things get really bad. A lot of members have said that they joined months before they came back to read and post! Maybe it just takes time and asking new members what they would like is a big start.
Sweet X x X
I had loads of problems trying to get sclerals and be seen at Moorfields, so to me reading bad things here wasn't so depressing as it was where i was. At least i knew i was in the same place as others here, and i felt that it couldn't get any worse than not being able to see and being on long term sick. I didn't find any support anywhere else, couldn't get seen by anyone and just wanted some advice. I guess though that if i had come here before i had problems, when i had 15 years of trouble free lens wear it would have been totally different as i would have found a lot of posts stressful.
I think that this is why my twin sister doesn't read here, as maybe she does think that it is totally depressing and is not in a bad place to ask for help? Maybe things would change if things sadly got worse.
I personally think that we are very approachable for new members, but only if they post and let us know they are here! To those who read and never say anything things are harder, as they read very stressful stories and probably leave even more confused.
Maybe we do need somewhere on the site aimed just at new members, where we can make them feel welcome so that they will want to post if they have any questions. It would also be nice to add things about the forum members (we have already added the committee), but on how posts are counted etc and something about regular posters. Maybe we should add any members who are open to receiving pm's from those too scared to post? I know that i get quite a few pm's from new people, but do add that while i am happy to reply it is nice to have it on the forum as it will help everyone.
Also as it is the graft posts that are more stressful, maybe we should have a separate forum just for surgery posts? That way new members wouldn't get overwhelmed with the thoughts of a corneal graft, and those who were thinking on it would be prepared on what they were going to read BEFORE they saw the posts! Some with mild KC may not know that there is a chance they could need a graft at some point, we don't want to scare them just when they are asking what the condition is all about and what lenses are available etc.
Also having 1000 posts doesn't mean that you are going to know more than those who post less, or indeed say anything about you being able to help! But new members are more likely to aim questions at those with higher posts thinking that they are more able to help. John did stop the Chit chat forum from adding to our total though which has helped, as now the posts are only included from KC posts.
I think that the layout is much more user friendly and more welcoming to new people. You can find information quicker and post easily. We just need to remember that there are a lot of people who read but never reply, or say something only when things get really bad. A lot of members have said that they joined months before they came back to read and post! Maybe it just takes time and asking new members what they would like is a big start.
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
The only down side I can see with a forum just for newbies is that it may well need more moderation than the main board. This is from the pointof view of being able to keep things in context and ensuring we start with the basics to reasure people that they will not go blind tomorrow, chances of needing a graft quite remote really ni most cases and explain what the process is.
Perhaps it would be in the format that you can only post if you have less than a certain number of posts and those that reply are selected from the professionals who post and the commitee as I know they have varied KC experiences and not many post.
Just trying to see things from all perspectives and anticipate isues but also suggesting a way round them
Perhaps it would be in the format that you can only post if you have less than a certain number of posts and those that reply are selected from the professionals who post and the commitee as I know they have varied KC experiences and not many post.
Just trying to see things from all perspectives and anticipate isues but also suggesting a way round them
Gareth
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Alison Fisher
- Forum Stalwart
- Posts: 334
- Joined: Sat 18 Mar 2006 12:56 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
- Location: Leicester
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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
Gareth, i wasn't talking about new members having a separate forum that would be VERY confusing, and would mean a lot of repeated posts! I meant having a section on the site for them to read, although we do have a basic one about KC etc but maybe we should aim it more to newbies?
I was talking about a separate forum where people can talk about grafts. We could stick a post about a full graft and DALK etc at the top and then let people come in to post about their fears and concerns when thinking about getting a graft. It would also be a place for those who have had surgery to jump in and let us know how they are doing! That way to those who haven't had surgery it would take all the stressful posts about grafts and stitch / rejection problems off the main forum. Most people with KC do not have a graft, yet the majority of our posts are about them. I thought that was stressful myself until i had one last year!!
Just wondered what everyone thought on it?
Sweet X x X
I was talking about a separate forum where people can talk about grafts. We could stick a post about a full graft and DALK etc at the top and then let people come in to post about their fears and concerns when thinking about getting a graft. It would also be a place for those who have had surgery to jump in and let us know how they are doing! That way to those who haven't had surgery it would take all the stressful posts about grafts and stitch / rejection problems off the main forum. Most people with KC do not have a graft, yet the majority of our posts are about them. I thought that was stressful myself until i had one last year!!
Just wondered what everyone thought on it?
Sweet X x X
Sweet X x X
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