Which hospitals are KC 'centres of excellence'?

[JuliaF]

Many thanks for all your replies.
My son is a teacher so disposable income is non-existent for him.... I'm hoping the NHS will be able to offer him the help he needs. Fingers crossed.

Anthony, I was really surprised that you mention further laser treatment may help I've read a great deal on KC this last few days and everything I've seen tells me that laser treatment is a no no for KC sufferers, indeed I wonder if that's what has got Rich in this situation in the first place!

Is this something I'm not understanding correctly?

Thanks all of you for your interest; it is very appreciated

Julia

[GarethB]

What Anthony is probaly refering to is Accuwave Topography Guided Advanced Custom Abalation Treatment for Keratoconus (T-CAT) which is offered by Accuvision as far as I am aware they perform the CXL first (Accuvision refer to this as C3R) and then perform the T-CAT.

The searches I have done of laser eye surgeries, Accuvision are the only people in the UK to do this type of combined procedure. All the NHS consultants I have spoken to over the past 5 years have sever reservations about going near a Keratoconic eye with a laser. The only times I have heard them say the use of a laser is safe is when it is used to cut the chanel for Intacs or when a laser us ised to remove the cornea in a graft.

The US army and the FDA are concerned that it is laser eye surgery that in some cases cause the development of keratoconus which is why they have invested a large sum of money to ivestigate if this is the case.

[JuliaF]

Once again I thank you Gareth for sharing your knowledge. Blimey, KC is like a giant apple. You take a little bite (of things to learn about it) only to find that what you know is only a tiny part of a humungous and changing apple!!

You have confirmed the impression I've already formed with regard to laser intervention, thankyou for clarifying the ins and outs around it. There seems to be so much going on regarding KC treatment yet no clear path and no guaranteed outcomes. Rich goes for his consultation Feb 24th at the QMC Nottm. We don't yet know how severe they consider the KC to be. Rich thinks its only in one eye....I so hope he is right...

Uncertainty is always hard to deal with.....

[Andrew MacLean]

He could ask how advanced his KC has become, and whether there isany sign of the condition in eye #2.

[JuliaF]

He could ask how advanced his KC has become, and whether there isany sign of the condition in eye #2.

Yes, I think that will be one of the questions Andrew I hope he sees someone who is well versed in the different types of lenses and the other treatments available which may help.

Having a good consultant on your side is so important.

How would they describe 'how severe' KC is? Is there some kind of scale that makes sense? Sorry for all the questions.

[GarethB]

We often get told our KC is mild, moderate or severe which are relative.

For me the severity of KC is how much it affects your life, in my right eye it is moderate and mild in the left but the oly thing I can't do without lenses is drive. I can do everything else I would normally do in my life. Others that I have met at KC confrences and local supprot groups only have mild KC but without lenses are effectively housebound.

So I don't find the scales used particularly helpful at all until you get to the extreme of sever where you are talking grafts which only a relatively small percentage of those with KC need.

[pepepepe]

What is the answer to the question, still none the wiser to this very good question.

"Which hospitals are KC 'centres of excellence'?"

Why is there no offical answer ? why it is hard to even get a straight answer ? (but just excuses made) there should be a straight answer from those who say they care (there was not so yet again that proves my point), are there no league tables ? how many Kera- corneas come out winning ? how well did the fitters do or surgeons ? for the NHS to know the value of money that they spending on us this should be given and this should be know. I have a relative who is one of the directors of a NHS Trust, apparently stats like this should be readly available to anyone who wants it. This begs the question why all this round about talk and not the facts or even having it already from years back and pushing for answers where they should be from, but the most interest is in pushing a brand of contact lenses with a high price tag, a part which does not get mentioned. Also for optimal vision RGPs will beat hands down any soft lens, so do you want people not to have the best possible vision ? yes ok there is the comfort issue for some people (and its onlky some people not everyone or the majority as its not everyone here who posts they have problem with this and there are many more who never even need to visit a forum about this, but there is soft perms and Soclear lenses which address this issue and of course Scleral lenses and other soft KC lenses, flex edge lenses, synergeyes... the list goes on. This post is not meant to come over in the wrong way, its just that I have trouble typing a lot due to KC it self, nothing more, as I want to keep it as breif as possble to save on the typing and growing pain i get around my eyes trying to see which goes with it.

Pepe

[JuliaF]

Hello Pepe
That's great that you have a relative who is a Director of an NHS Trust who understands the procedure for accessing the 'stats' on centres of excellence with regard to KC.

It would be most interesting if you would seek that feedback from your relative and share it on the forum

thanking you in anticipation.

Julia

[Sweet]

I count my KC as mild as I can see very well with lenses, without them I am like Gareth in that I just am not safe to drive! I can see just enough to get about, though it is frustrating trying to see well and I suffer with a lot of headaches because of this.

Stats on centres of excellence sound like a very good idea and we should ask about some info when we go to a centre. Surgeons should be able to tell you what their ratings are, especially with a private one. On the new treatments this is going to be harder as there won't have been enough time to get any.

Love Claire X x X

[John Smith]

Hi Julia,

It's certainly true that as Pepepepe points out that there is probably no real definition for "Centre of Excellence" - it's just a term that is bandied around by patients and also by hospitals themselves in a form of self-promotion. Usually however, those that make this claim don't do so lightly, as they are putting their own reputation on the line.

Queens rang a bell with me though, and I've found a "members' story" on our main website written by a KC patient who attended Queens. His KC was obviously more progressed than your son's, but you can read the article at http://www.keratoconus-group.org.uk/sit ... -post.html.

All the best,