UK Keratoconus Self-Help and Support Association

Lynn,

Appreciate your knowledge and regularly sharing it here.

As for getting a resounding NO from optoms about whether lenses damage the eye - that is because there are no definitive studies on the subject

From a healthcare system I find that pretty abysmal. However from my own KC patient experience of attending NHS eye clinics (Manchester & Lancaster) for 26 years, on and off, I can understand why nothing is known - no regular (at least once a year) quality topography records of the cornea are taken (i.e using a keractometer). Its a crisis management approach to treatment of KC.

Where there is a will there is a way, quite often.

I've certainly got the will but not yet found a way.

There are private optoms who work exclusively with KC

Could you possibly list these with contact details and indicate location for me to pursue.

The only way I can see the KC treatment situation improving in the UK is it being driven by an organised, pro-active and professional KC self help group. Its time these was a steering group set up with the purpose of identifying the places of excellence of KC treatment and also setting up a national centre of excellence.

Comments like "all the best with your clinic" I dont find particularly helpful.

To be honest I am fed up with the whole thing.

a totally justified comment Fordy from my POV. I hope that you can find a way that will work for you and look forward to reading a successful outcome here.

Hi Steven

Sorry not to have replied straight away to your post but hopefully the following will help explain why.

Since I resigned from the Keratoconus Group committee, and as a moderator from this forum, I have been contacted by many people that have KC, PMD, INTACs, CXL and have post refractive surgery problems etc that share the same point of view as yourself. Furthermore, these groups have little or no support or guidance compared with what we have here for KC. Additionally; many of the issues you raise are more properly addressed by a pressure group rather than a support group, which this forum represents.

After much discussion, a group of us have set up a charity called the Irregular Cornea Foundation (http://www.ic-f.org) to represent all forms of Irregular Cornea (IC) of which KC is just one. The idea of this foundation is to provide information on all forms of IC and to pool the experience of members, professionals and manufacturing industry in order to be in a position to interact with official bodies such as NICE or other Government agencies to promote our issues. We aim to have a similar recognition as the Glaucoma groups, for example. Since KC is relatively rare, we feel by combining all forms of IC under one banner, we may have more effect.

Steven Williams wrote:

There are private optoms who work exclusively with KC

Could you possibly list these with contact details and indicate location for me to pursue.

To be fair to the KC Group, they tried to address this but as far as I am aware the optometrists that registered their details only said they had an interest in KC rather than experience. The problem is, if you post positive feedback about a particular practitioner it looks like endorsement and if you do the same with negative information it could be taken as libel (and there have been issues with this on these boards in the past). We are trying to develop a more equitable and independent system such as a member rating system.

Steven Williams wrote:The only way I can see the KC treatment situation improving in the UK is it being driven by an organised, pro-active and professional KC self help group. Its time these was a steering group set up with the purpose of identifying the places of excellence of KC treatment and also setting up a national centre of excellence.

Indeed! This is exactly what we are trying to do but by creating an organisation that covers more conditions than straight KC. As the conditions are so rare, we have to look outside the UK as well to create sufficient “clout”. This would also include setting up international conferences and seminars to promote education of professionals and stimulate research. Something the French KC group tried a few years ago but unfortunately that has all gone quiet, perhaps representing a wider community may help maintain momentum.

This is all very much in the early stages – we have the bare bones set up and we need members now to drive the Foundation forward. If this is something you or anyone else is interested in helping with then please contact me In the meantime, we are currently trying to get as much together as possible in order to launch. We are in the process of putting together an information pack, which we will distribute to help drum up support and revenue, as well as raising awareness and getting our name out there. As you can imagine, these things take time so the more offer of help the quicker things will be done!

Thanx for your usual constructive comments/advice Gareth and providing the website link.

I have registered, logged in and put my first post there.

We are trying to develop a more equitable and independent system such as a member rating system.

Look forward to seeing that in place. Sadly I have seen no evidence on this site were you can get support re: direction to top quality KC healthcare professionals.

For instance I ask Lynn for help and support:-

Could you possibly list these with contact details and indicate location for me to pursue.

Yet there is no positive response to date on the forum or by a pm.

Another instance of what appears to me to be a fear of raising ones head above the parapet and speaking out the truth is the current situation with the Manchester KC group - There remains complete silence. Why?
(BTW you cannot be successfully sued if you tell the truth- the person/organisation who is suing you for libel has to prove that your information is a lie and it is malicious )

Whilst I appreciate this isn't your intention, I feel your comments about Lynn are perhaps a touch unfair. She, herself offers a service to patients with KC so can hardly post back, "Me, I'm good, come and see me!" ??

HI Steve

Martin makes a good point and the other is that I am not anything to do with this group's administration or associated with them in any official way, though you may think I am by the amount of time I spend on here!

I am merely a normal member, like you are. I offered to help and constructed the list that is currently here under the remit that no-one is recommended positively any more than anyone else. More than that I cannot do, as then I would be going against the wishes of the committee. I did ask for a professional forum - which we got - but unfortunately no-one posts there and is to all intents and purposes defunct!!

To post or pm you the information you request would therefore be at odds with the committee's wishes.

You also have to understand that as a charity, every official member of that organisation is liable personally for any legal costs incurred by any kind of court action - and unfortunately both sides have to pay out money in a court case whether it is successful or not!

Again - I point out I have no other influence in this group other than to post as you do.

Lynn

Lynn

Lynn has stated the position with clarity and good grace.

There are two lists of KC friendly optometrists on this site. One is a members' list (in members only) and the other us a list to which optoms can 'opt in'.

Andrew

Goodness Gracious me

Firstly to avoid any confusion I did not create or start this thread. It was mod created and moved by Andrew from here:-

http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=5170&start=20

If mods move threads I think that it is only fair to everyone and for record purposes and to avoid "official confusion" to indicate a link from where the thread got moved from.

Gareths announcement of a new UK website is imo excellent news and imo needs to be put on a KC links sticky thread or as an announcement.

MartinC wrote:Whilst I appreciate this isn't your intention, I feel your comments about Lynn are perhaps a touch unfair

I've made no comments about Lynn just pointing out the fact that I made a request for information and never got it.

Lynn has clarified the situation regarding the policy here on not permitting such disclosure of information and I thank her for doing so. Pretty sad policy imo and certainly not in the best interests of KCers.

Andrew MacLean wrote:There are two lists of KC friendly optometrists on this site. One is a members' list (in members only) and the other us a list to which optoms can 'opt in'.

No such members list appears on my board index. Am I not a member then? (always believed I was). How can I access these lists then?

Lynn White wrote:You also have to understand that as a charity, every official member of that organisation is liable personally for any legal costs incurred by any kind of court action - and unfortunately both sides have to pay out money in a court case whether it is successful or not!

KCers who post on here revealing the truth of their professional KC healthcare treatment have nothing to fear- this is a KC forum. In a court case its usually the loser who ends up with a judgement for paying all costs.

Its a bit like chosing a hotel for a holiday. You go on a website like "holidays uncovered" and read customers reports and ratings. I dont see the hotels who are justifiably getting bad reports suing individuals or the website. Why should this site be any different?

BTW I dont think the title of this thread is appropriate as its not related to "contacts and KC" more like "How to locate a top quality KC healthcare professional in the UK"

Steve, your completely right buddy, there s a lot of superficiality. There is no involvement ? try this email lynn@keratoconus-group.org.uk

Pepe

nice to see you posting again.

Steven

access to the members only area depends on a separate registration. Go to the homepage for details of how to register.

Andrew

Steven, I just meant your comment that although you had asked that Lynn had not responded to your request for a list of KC experience optoms. I think forums are always difficult to relaise the tone in which comments are meant in and a thread which can appear 'heated' could actually be very jovial in a face-to-face situation.

My own take on this is that you can't rely on the NHS and you need to take matters in to your own hands and go out and speak to some private KC optoms and see how you get along. There is a list of opticians willing to take on KC patients on this website which is available to all and although I know through experience that some on there are not the best, there are others who will no doubt be excellent. This also comes back to personalities and an optom who works for one patient might not suit another.........

Bottom line is that this is your problem to deal with and if you don't go out and deal with it no-one is going to do it for you?