Help at Work II

[Barney]

It may just be possible that badly fitting non gas-permeable hard lenses could have caused KC in a small number of patients, but it is rather academic now really, dont you think?

Ali, I’m sure you didn’t mean it in quite that way, but it could seem incredibly smug and dismissive for someone close to blindness to be told that the cause of their condition is “academicâ€Â

[Ali Akay]

Barney
When I said it's academic, what I was trying to say was as non gas-permeable hard lenses are no longer fitted we'd never know if there was any link for certain as it'd not be feasible or ethical to carry out a prospective trial now. So, what do you want to do? Feel bitter and angry and wonder whether somehow your KC was caused by lenses you had over 20 years ago, and there would be no way of proving it for certain; or get on with your life and make the most of the situation. It's up to you, but I know what I'd do if I was in your shoes.

If you feel opticians/optometrists out there are only interested in taking your money and they dont care about your eyes you are mistaken and misinformed.There are always exceptions, but most of us try to provide a professional service. We have to try to strike a balance between not informing patients at all and scaring them witless with every remotely possible eventuality.To a large extent it's supply and demand I am afraid, if patients want to wear contact lenses, it's our job to fit them, if we dont, someone else down the road will.As long as we explain possible risks based on current scientific knowledge ,and do our best to look after their eyes than we have provided a useful service.The same goes for laser eye surgery, breast augmentation, and hundreds of other procedures routinely carried out.

I was not suggesting most problems are self-inflicted, was merely giving examples from personal experience to point out to Sajeev that not all patients care about their eyes more than anyone else!

[Sajeev]

Yes, Ali thanks for your post, there is only a few like you, and we need more like you, who will engage with the issues.

I think with cosmetic lenses, people can choose to wear them or not, you could say its an elective correction method, with KC you are diagnosed and from that point on wards you do not want things to get worse, when its a chronic disorder, so nothing is in vain when you are "talking" about these things, and no one want's to waist their time posting if they had no reason to. Anyway, to put it simply, I think flat fitting lenses should be "out-lawed" for us in KC when there is no good reason to use them.

There is a need i think, for those who decide what lenses are used in relation to KC patients to look for and read some of these studies, instead of patients reading them first and passing it to the profession.

I do think you are one of the best we have Ali, and thanks for your straight forwardness.

[Barney]

Ali, I'd hardly say I was bitter or angry as you suggest or that I'm failing to get on with my life. I'd suggest you read the whole of this thread and posts I have made to other threads. You'll see I've no idea whether lenses were a factor in my KC. The point I have made is that I find it hard to understand why the possibility of of a link is so widely dismissed in the UK when it is so accepted as a possibility, and sometimes more than that, in the US and elsewhere.

You'll also see that I have repeatedly said that KC has made no impact on my life that I know of. I had a graft that very few people are even aware of and it's something that rarely crosses my mind. I don't even know much about KC despite having it for 20 years. You'll see I mentioned that having to use reading glasses is far more of an inconvenience than KC and lenses and that inconvenience comes to us all. For me, KC has never been a big deal. I have been doing a little belated research over the past few weeks and looked in here again as I've an appointment with a consultant next week. But thank for your well-meaning advice anyway.

what I was trying to say was as non gas-permeable hard lenses are no longer fitted we'd never know if there was any link for certain as it'd not be feasible or ethical to carry out a prospective trial now.

Do you know of any attempt made in the UK to look at the history of KC for people who developed it after wearing lenses for many years? Is it a question that is ever asked or noted? Certainly no one has ever enquired of me.

I'm sure that your own industry consists largely of extra-ordinarily selfless people (although I have met one or two over the years I had doubts about).

To a large extent it's supply and demand... it's our job to fit them, if we dont, someone else down the road will.

Ah. "If we dont, someone else will" has been a much used argument in all sorts of nefarious trades but I'm sure deep down that "someone else down the road " is as selfless as all opticians and those in the contact lens industry. When opticians fought for years to prevent the free sale of reading specs by non-opticians I expect the financial benefits of the monopoly they wanted to preserve hadn't crossed their selfless minds either (even though the outcome was that the elderly could now buy specs for £1 that worked as well as those that opticians had been charging hundreds of pounds for).

I note that you wrote in another thread:

Virtually all corneal surgeons carry out LASIK,LASEK etc. My guess is that even those who may have reservations about long term safety etc do it as they probably feel obliged to do it! Apart from the financial rewards they'd want to demonstrate their expertise in the latest technology.

That's a very serious accusation. Perhaps they justify such behaviour with your "If we don't..." argument. If only corneal surgeons were less venal or ambitious and as selfless as opticians and lens suppliers eh?

Ali, don't feel quite so defensive or misunderstood and get on with your life. I hope that doesn't sound too patronising?

[Ali Akay]

Barney
I used to post here a lot but havent for quite a while until a few days ago. I think you've just reminded me why I had stopped! I'll follow your advice and get on with my life and stop meddling in your learned discussions

[Barney]

I certainly wouldn't consider any of my views on KC as "learned" Ali. It's never been a subject of sufficient interest in my life. But I certainly recognise when someone is attempting to patronise and it's a habit that's less readily accepted on the internet I'm afraid.

[jayuk]

GROUP HUG again! Thats twice in a matter of 6 weeks!

Ali, I do hope you dont stop posting here; whilst I have also have a difference of opinion with you; I generally tend to reply and thats it...its over...and id like to think that you take the same approach........if we all agreed to each other than friggin hell...life would be boring!

On a wider note, this is the Internet and many people say things they wouldnt generally in real life!..its just a payload of the Internet (this comment is NOT aimed at anyone in this thread, so dont even bother retorting you disobedient child!)

I can understand what Barney is saying, but I also see where you are coming from, and maybe a few things you have said have been taken out of context....as we all translate and decipher things differently...

Lets all just forget it....and carry on!....thats my thoughts anyway!

[Andrew MacLean]

One of the things I used to like about this forum was that, even when we disagreed, we generally tried to get along without actually insulting each other.

Fond memories of distant days!

Andrew

[Anne B]

I think we should remember that this is a KC support group and not a KC who knows the most group! (if it was i would of been long gone)
Its nice to come hear and read the posts and learn more about our condition, but you have to remember that if we were all to meet up alot of us would have nothing in common and maybe dislike each other!!
Just my thoughts on the subject.

Anne

[Ali Akay]

Jay
There's nothing wrong with having diversity of opinion, and I enjoy a good argument as much as the next person, but dont expect to be called "incredibly smug" or "patronising". I know things can be taken out of context and misconstrued, but we should try to remain civil towards each other. If my views are sometimes controversial it's mainly because I try to give the view from a busy hospital practitioner perspective as most sufferers are treated in NHS clinics. A lot of the things should be done better perhaps, but the reality is different. In an ideal world all KC sufferers should get their lenses and solutions free, should have frequent check ups, waiting lists should be short, everyone should have regular topographies, access to the latest treatments like c3R, and all contact lens fitters trained to the highest degree and providing first class service. Unfortunately all this isnt going to happen because the system is overloaded, if anything the future looks more uncertain, in my opinion, because a lot of hospitals are looking into ways of reducing their deficits and contact lens provision could be an area they'd try to make savings. To give topography as an example, my usual session which should finish at 5pm rarely finishes before 6, if I have to do topography on every patient, I probably wouldnt finish before 7-8pm.If I increased the duration of appointments then the waiting list gets even longer!