Left This Forum because Its Not Open

[Graeme Stevenson]

No need to shout!
Of course the KC sufferer comes first but there has to be a balance.Dealing with KC patients is not an exact science and what works for one may not work for the next person.This does not mean that the Optom,CLO or Ophthalmologist has got it wrong or is incompetent in every case although that may actually be the case with some.
My thoughts would be to post your experiences -good and bad-and allow everyone to judge for themselves.

[GarethB]

Just to correct one point, the Optom forum being open to all was discussed at both local goups and at committee level.

The general foum has been used in the past to discuss optom issues both good and bad all we ask is for posters to refrain from naming organisations to avoid any liable action being taken against the group.

Where people have had particularly bad experiences the is the Let off steam area which you need to request access to so the optom area is not unique as optome need to inform us of who they are before they are allowed access.

For the forum to develop we need feedback and we get that from those wo regularly post and those who do view the forum and are members of the group but choose not to register.

Of all the people who view the forum, very few are regular posters and we have many who register but choose not to post. Plus the forum posters only represents a very small proportion of people who are receive our news letter. We do accept feedback and coments, it is just some prefer the pm or e-mail route to the public forum.

[house]

Dear committee or who ever you are.( that runs the forum )

Please can we open the doors on all subjects regarding Keratoconus
to the public doman wether there being optoms dealing with subject and treating folk
to the sufferers and then we can see whats happening and beat Keratoconus

its so important that the info is not locked away behind doors and
all information is out there for all visitors to the forum.

its imperative that there is total freedom on the subject of Keratoconus
and how to treat it, and everything is in public domain to access.

thank you

[Andrew MacLean]

What I don't understand here is why we are trying to defend a position that is clearly untenable.

Lynn has said that she sees no reason to keep the optoms site private; it is quite possible to allow people to read a forum to which they cannot post: I can read the Scottish forum, but cannot post there.

I think I said in response to the original post on this subject by house, that my own favoured solution would be to delete the professional's place: Gareth has said here that it is very seldom used.


By the way, Lynn, house did post a question about the professional's place on February 10.
viewtopic.php?f=4&t=4714
It was over a week later that he indicated that he was going to leave the forum, partly, I think, because he had not had any explanation of the private nature of the professional's place.

Andrew

[Graeme Stevenson]

The fact we are having this debate on here is a good thing and can only be good for the forum overall.
I can understand some optometrists not wanting to advertise publicly a lack of knowledge hence the theory behind the "closed" area. As it happens it is not being used for such a purpose and is effectively closed anyway.
I would say to all just post as you see fit provided it is not libelous or offensive!

[GarethB]

House

It is very easy to see who the committee are:

KC Group Committee

Andrew; you should be able to post in the Scotish forum as these are where we put questions that might relate to a specific part of the country or discuss a local group event that took place.

We have an AGM in March so it would be advantageous if those with views on the forum shared them with the wider community at this event so we reflect the views on this forum of as many KC members rather than just the minority that post.

[house]

Please someone pass on my note to the committee

Dear Committee,

Please can we open the doors on all subjects regarding Keratoconus
to the public domain wether there being optoms dealing with subject and treating folk
to the sufferers and then we can see whats happening and beat Keratoconus.

Its so important that the info is not locked away behind doors and
all information is out there for all visitors to the forum.

its imperative that there is total freedom on the subject of Keratoconus
and how to treat it, and everything is in public domain to access.

Information about the people who suffer from it and treat it like
the optoms and their problems will help the battle with Keratonconus.

Its so important that the information is avaiable to those online
and needs the forum to be opened up to internet users and brought out of dark rooms.
( mean the closed areas of the forum ) or segregated areas like the optoms area.

If we can all see the diffrent problems, then we can act on it from every angle from
optom to the sufferer.

thank you

[Anne Klepacz]

House - as I said when you first posted on the forum, the KC Group is not just a discussion forum. In fact, it started before the Internet! The whole purpose of the Group is to provide as much information as possible and for its members to support one another, whether they be people with KC, their families, or health professionals. We do this by arranging meetings in various parts of the country (advertised on the ticker at the top of this page) to which we invite guest speakers, organising a national conference every 2 years from which we produce booklets and DVDs which are sent to all our postal list members, producing information leaflets like the 'Supporting Students with KC' and 'KC at Work' which you'll find on the home page of this site www.keratoconus-group.org.uk and running this website. The professionals forum is NOT part of KC Group activities - as Lynn and Graeme have said, the KC Group simply agreed to host that forum so that optometrists could talk to each other about KC and perhaps learn from each other. When it was first set up, I did wonder whether people would think it was odd that there was a forum they couldn't access. But I have to say that in the 2 or 3 years it has been there, you're the first person to ask any questions about it! If it doesn't serve any useful purpose, then perhaps it's not worth keeping it there. We can certainly discuss it at the AGM. I'm sure there are hundreds if not thousands of professional forums for every professional group under the sun, which are only open to members of that profession. What's maybe unusual is for such a forum to be 'hosted' by a charity website.
I hope the main forum does give people a place where they can talk about their experiences, ask questions and hear from others who have 'been there' and can pass on tips or suggestions. As more options become available for KC - new kinds of lenses, new treatments such as Intacs and crosslinking - it's also a place where people can share their experience of trying these new possibilities.
As people have said, what we do have to be careful about is libel laws, which apply to the internet just as they do in other communications. So moderators will edit or remove any negative posts which name individuals or organisations. A forum which is closed down because of legal action won't help anybody. And it wouldn't just be the forum that would go - the charity itself would cease to exist. Not something any of us would like to see happen.
I hope we can continue to be supportive to each other here.
Anne

[private104]

Thanks for explaining that Anne. I still agree with House that it seems odd to be excluded from a part of the forum. It's a bit like goi g to Scotland on holiday. When you can't understand what people say it is easy to imagine that they are talking about you in terms that are not flattering!

House, take it easy and give them time to decide. You know that Andrew supports your idea and neither Lynn nor Graeme oppose you. I guess they may need to wait until meetings come round.

[Graeme Stevenson]

Thanks for explaining that Anne. I still agree with House that it seems odd to be excluded from a part of the forum. It's a bit like goi g to Scotland on holiday. When you can't understand what people say it is easy to imagine that they are talking about you in terms that are not flattering!

House, take it easy and give them time to decide. You know that Andrew supports your idea and neither Lynn nor Graeme oppose you. I guess they may need to wait until meetings come round.

Here in Scotland we dont say anything thats unflattering about anyone.
We love everyone - especially after a few whiskys!

Hopefully the forum, which is only a very small part of the group, will continue to support all those affected by KC in their life.