Thorny questions about expert advice...

General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

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Andrew MacLean
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Postby Andrew MacLean » Wed 10 May 2006 5:13 pm

My own shilling's worth is, 'if it isn't broken, why try to fix it?'

I know that people who have something to sell may not always welcome their customers being told 'be careful before you buy', but that, after all, is what the forum is for.

Or have I missed the point?

Andrew
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John Smith
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Postby John Smith » Wed 10 May 2006 5:29 pm

Indeed, we must be careful to consider fully the ramifications of any additions to the forum:

The "Ask the experts" or somesuch forum has come up before on a few occasions, but think about it: after a while, most discussion will end up in that forum, leaving the existing one(s) empty.

Whilst I can potentially see the benefit in having a forum for the newly-diagnosed low-level (or sub-clinical KCers), I can forsee the usage of such a forum going in one of several ways:
  1. Newbies will use the new forum, and nobody will answer them. Newbie goes away unhappy.
  2. Newbies will use the new forum and develop friendships with other newbies. Newbie will then be less likely to post their more advanced symptoms to all the strangers in the "advanced" forum, leaving either an unhappy ex-newbie, or two forums containing the same stuff.
  3. Because of the need to help newbies, the more experienced KCers will help out the newbies, again spreading the load on to two fora.

I'm sure that similar arguments can be levelled at most possible fora (as an example, the "Parents" forum closed due to lack of interest... as the topics were better discussed in the main forum!)

I think, for the time being, the status quo option seems to be leading the way.
John

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jayuk
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Postby jayuk » Wed 10 May 2006 6:49 pm

I agree that having a long list will put people off, but I dont agree that it confuses people...as this seems to have been mentioned a few times....

Of course any change will get taking used to...but as John you pointed out; each has its pro's and con's. Maybe your right, add one for Ask the Optician / Professional...and then reflect and review in 3 months?......

The mere fact that we are having a debate on this very issue would indicate that there was an issue in the first place?.....or at least a potential issue? who knows!
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

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Val G
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Postby Val G » Thu 11 May 2006 7:42 pm

I don't post a great deal but visit the forum many times a day, finding it a great source of support. All our circimstances are different and the posts from people who are having a tough time have never alarmed me, but help me to get through my daily battle. But it's all getting a bit complicated. I feel the reluctant posters will be less likely to post because they're not sure of the most relevant forum. But more likely, in my case, be afraid to post for fear of criticism that what they post is bad advice, that someone may act on, when it's NOT advice but personal experience or opinion. As Sweet has said, as we go through grafts etc we need somewhere to sound off, long may we feel comfortable to do so here.

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Andrew MacLean
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Postby Andrew MacLean » Thu 11 May 2006 8:06 pm

Spot on, Val.

But, although many people on the forum would probably have advised me to accept the offer of a graft long before I did, nobody has ever posted that they think I was wrong. I have always found this a place where we can share experience even if it seems strange to the others.

That I think is the strength of the open forum as it operates, and I am glad to see that John does not plan to change things for now.

Yours aye

Andrew
Last edited by Andrew MacLean on Fri 12 May 2006 6:10 am, edited 1 time in total.
Andrew MacLean

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GarethB
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Postby GarethB » Thu 11 May 2006 9:05 pm

I think all of reply to posts based on our own experiences.

If I ever receive criticism I would ignore it as I know what I experienced because I keep a little diary. We are all different and what works for one may not work for another, but how will you know unless that small snipet of information is brough forward.

I have suggested to what some may theink the daftest of ideas, but it worked for me and I later had a very nice response posted on this very forum saying it sounded strange but worked.
Gareth

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Lynn White
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Postby Lynn White » Mon 15 May 2006 10:16 am

I retired from this discussion a while back, lol, as my original intention was to talk about when people post asking for advice. I had been noticing that people post with half the story and then everyone advises based on that information resulting in a bit of confusion! It then seemed to develop into a discussion about newbies and the boards, which is more a discussion for the members than myself!

However, I was just wondering whether you might consider an article on the front page clearly labelled "Newly diagnosed?". Your main article there at the moment, "What is KC" does not say that the condition may not progress, in fact it says...

"Although no one can be sure how far keratoconus will develop in an individual..."

and

"However good vision may be difficult to maintain at times as the condition progresses and contact lens tolerance varies. The first line of treatment is usually with rigid contact lenses although some people with early keratoconus may be able to wear spectacles or soft contact lenses."

As this is (hopefully) the article new visitors to the site look at, this can be a bit misleading for those who have very mild KC, as it implies KC WILL always advance. It is, however, a perfectly reasonable statement about KC as most of you here know it.

All it would then take is a sticky at the top of the discussion forum also labelled "newly diagnosed"with a welcome speech and a link to the article. The article could cover most newbie questions (culled from the boards here) with links to various FAQ - like NHS vouchers, differences between high street optoms and hospitals etc and so on, so people get a basic grounding.


I think that would be sufficient to help those "lurkers" who do not want to post and just want more info. ALso then any new posters who have managed to by-pass all of that can simply be directed to the article and then invited to return with further questions.

This seems to be a good way of helping new members without disturbing the very valuable support you all give each other.

Lynn

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GarethB
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Postby GarethB » Mon 15 May 2006 11:33 am

Lynn,

I think what you have posted is an excellent idea.

You do know you may well have voluntered yourself for soemthing.

Is it your optom group thingy whatsit this week?
Gareth

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Sweet
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Postby Sweet » Mon 15 May 2006 11:58 am

LMAO!!! Gareth that is THE most profound and enlightening thing you have said yet!! LOL!!! Hehe a thingy whatsit lmao!!!!!! I think it needs mejig in there as well!!!! :oops: :P 8)

You ARE entertaining you know!! Hehe running away now before you poke me!! :wink: :roll: :twisted:

Lynn i think that it is a good idea, which is why i asked John about somewhere where we can put info for newly dagnosed people. It would be easier i guess to stick it here as this is where a lot of new people would head! I think though that it would be better as a closed post as then people (like me!) wouldn't be able to add loads of waffle after it and put people off!!!!!! :oops: :P

Sweet X x X
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GarethB
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Postby GarethB » Mon 15 May 2006 12:24 pm

Sweet,

Just do not get me on the difffernet technical ways we refer to things being broken.

There are degrees of brokenness :D
Gareth


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