Gathering more info...

[Lynn White]

Hi everyone...

I am just interested in gathering info about where everyone is getting their lenses from and what lenses are being used....

Obviously there is a big Moorfields contingent on here... but where else do you all go to??!! Its interesting to see how many are seeing private optoms and who is fitting what and where.

Also - is there anyone here who has been fitted with ALK lenses?

Any info is appreciated!!

Lynn

[John Smith]

Hi Lynn,

I'll start the ball rolling...

I used to go to a big-name high street optician, who initially diagnosed me with KC when they couldn't get RGP lenses to be comfortable or reasonable vision. They instantly referred me for a transplant. The consultant I saw told me in her first breath that the optician was right, that I had KC, and that I should go away and get a better optician!

I then went to a private, two-practice family firm of opticans, and had the most fantastic service. I had a number of Rose K lenses and later Rose K2 lenses for both eyes, often visiting for a consultation every couple of weeks until a decent fit was found.

Finally, we agreed that I'd reached the end of the line, and went off for a graft in the bad eye and a scleral (from Moorfields) in the other.

I'm now wearing glasses most of the time, with no useful vision from the non-grafted eye, but occasionally wearing the sclerals in both eyes and achieving a rather nice binocular 6/6... but only for about 5-6 hours a day.

I still use the family optician in my high street (in Sidcup and Eltham) - and would recommend them to anyone else in the area with KC!

[Paul Morgan]

Well I reckon I've posted all this before but I like nothing better than talking about myself so here goes...

I am under the care of Musgrove Park Hospital in Taunton. I see them about once a year. They recently referred me to a real gent of an optician back in my home town of Yeovil for lens fitting. The practice is called John Hart and partners and they sound a bit like John's place. Old fashioned real service and really knowledgeable. Nothing is too much trouble and they move at your pace. Absolutely brilliant!

I'm very lucky to have these new Comfort 02 Soft RGP's which I am doing really well with. They go in at about 7.30am each morning and stay in until bed time (about 9.00pm - ok very early, but we have a 9 month old and a 3 year old so we're always tired ).

I consider myself pretty lucky at the moment for a KC patient, although I do wish I could explain the condition to people more easily, without sounding like some charity case who is bemoaning their luck. I just don't seem to be able to communicate the effects very well. Anyone else have that?

The sight in my right eye is pretty good, but the left is bad and getting worse in my opinion. It's hard to tell though sometimes, you wonder if your mind is playing tricks on you ?

Anyway, that's me...who will go next????

Oh and if Yeovil Town don't get promoted from League 2 this year then I really will be upset!!!! C'mon you greens!

[Sajeev]

LOL...for a laugh...I went in to one of those chain store optician places...as it said in big letters....something like..."we are nunber one for contact lenses"

I told them that i needed contact lenses..lolol

They said sure...thats what we do!

And then i said that I need them more than most people...lol...and I went on to explain...(In the back of my mind I thought they may have the perfect contact lens for me!...wishful thinking on my part I know..lol)

The guy...said no..no..no...we can't do that...I said...why have you got that sign up for then!...lolol...you should have seen his face!..lolol

Anyway...I did it once more straight after that going in to another chain store who "specialise" in contacts...lol...and I got some help...well sort off!...the guy there told me that..."Rose" (the name of the opticians and the owners name) He said that they where the best opticians anywhere around East London! (I found him to be very open to new ideas and truely wanted to help...even though I'm hopless with lenses and still am!)

I think someone else posted that these opticians helped him out with finding them contact lenses which worked for them when others failed to do so..!

Sajeev

[Sweet]

Ok then

I went private for about 6 years i think as my parents took me to a local optician in Wales as i had glasses as a child from about the age of three for a squint. This was in my left eye, which i see very little out of and haven't worn in lens in for about 10 years now. I think the glasses lasted a year or so and then i just couldn't see but the optician blamed my parents for this and not making sure i wore my glasses and didnt mention anything else.

Years later when i went to uni in Swansea i was transferred everywhere and finally saw a specialist in Morriston hospital. Then i went back home after qualifying and saw so many people i have lost count! But i was referred in the end to Cardiff to a private optician called Roberts who transferred me back to the Royal Glamorgan hospital.

In the end long story cut short! I was a guinea pig for scleral lenses about Feb last year and on coming to London and being seen in Moorfields was interested to find out that not only had one of the consultants been in training with my last optometrist but that they organised the trial i used for scleral lenses! Small world isn't it! I was upset to leave Wales for a job offer in London, being told that if i had waited a few more months they would have had lenses for me. Really bad timing! But i have been reassured by Moorfields that actually this wouldn't have been the case as only now funding for them has come through. So i would have been waiting for them as long as i have had to here, and as i had thought they would have been sent from Moorfields anyway!

Its just so political! What i don't get is that if you have an eye condition that needs to be seen by a consultant and you are registered at a hospital why can't they directly refer you to another one if you move house? I had to go all through the system again, back to my new GP who knew nothing about me and be referred to another hospital. It is all paperwork and time wasting and has cost me 11 months of waiting. I now live nearer to Moorfields than i have ever done but am still no nearer to getting lenses i was going to get in Wales being ordered and made by the same place!

Also Wales is so far behind as well, i know that you might think that Moorfields needs to be a bit updated but they are 8 - 10 years ahead of us, as i could have had these lenses years ago and saved all the pain and hassle!

But ...

All good things come to those who wait i am told!

Thanks for reading. I just wanted to say that i have had more luck with hospitals than private, not sure what you all think. Also while i have paid for all my lenses my twin sister who is seeing someone in Windsor gets her gas perm ones free as they told her KC is under the NHS? How does this work out?

Claire X x X

[paula hardman]

I used to go to the co-op opticians because I work for another part of the group and got a discount, but then it got sold to larger chain and they got rid of the specialist contact lens fitter. Since then I've been going to the vision centre at the University of Manchester (ex UMIST) where they get lots of KC patients.

I wear rose K2s for about 8 -10 hours a day - the left eye is worse but seems to be stable, the right started later and the vision is still changing. I was thinking of getting rose K2s made in comfort o2 when I see them again next month, this seems to be possible cos the material is made by the same people as the rose k2.

[Lynn White]

OK this is all very interesting!!

Claire Thre is also no sta- you sound like you are having nightmares getting your lenses and yes its all political and its even worse now that we have new PCT's because they each one do things differently.

There is also no strategy nationally for KC and optometrist experience varies amazingly - precisely because KC is not common - some practitioners never see it.

This is something I am interested to see if it can be changed - which is why I am asking for this info in the first place. I suspect people from areas where this is dealt with better do not come on these boards as they are coping well and do not have long waiting times.

So please keep the info coming!

Lynn

[Ian Crutchley]

Hi Lynn

As you know I use piggyback lenses. Not sure where they come from, regarding the soft lens which I put in first to cover my eye they are 1 day Biomedics Ocufilcon soft lenses made by Ocular Sciences San Francisco, USA the outer lens which is placed on top of the soft lens is a small RGP which my consultant states have a life of 18 months & if after tests they show a new lens is required he orders them, he says from the USA 2 but unsure off whom,might be Ocular Sciences???

Ian

[jayuk]

Hey

I was diagnosed arund 10 years ago after going into my local high street optician. My KC must have been only very slght at that stage as my vision must have been 6/6 with some focusing issues. Was impressed with the guy that was able to make that judgement as generally the more high street names dont have the people to work with KC patients.

However, at the stage I was wearing Glasses for the next 18 months. I then walked into a different well-known high street optician and this was my most appauling experience to date and I can even remember the womans face to this date. I was than examined and told that Do I know I have KC? And do I know that eventually the Cornea will cone and fall off?......I KID YOU NOT. This was what i was told.......so leavng that place I was absolutely petrified..anyhow..............I then got refereal to Moorfields and also found two Opticians to work with, of which one I work with now in East London.

I tend to use Moorfields for check ups and lenses now and my Optician for other newser lenses and to discuss whats happening in terms of new developments. Plus I think at that stage I am at, I am able to discuss my graft decision with my Optician who has seen me when I was just wearing glasses and thus has alot of history.

I havent really gone to see any one else, especially the high street places as a) I dont have the time to waste 2) I know they wont be able to help me and c) Ill more than likely know more than them on my condition.

PS - I kept the names of the High Street stores intentionally as I see no use hiding them and plus remember we have a specialist condition thus going to them is not ideal, as each of this companies would clarify

Note: Apologies to Jay, but after consideration by the trustees, we have decided to remove the names of the opticians concerned for legal reasons. Edited text is in green above.

John

[Drew Radcliffe]

Hi Lyn

I'll keep it short im struggling reading today (same as yesterday mind you and probably will be the same tommorrow but i like to keep optomistic about these things).

I attend Moorfields for my sclerals, used to go to my local hospital but I got all complicated so they reffered me.

Hope this Helps

Drew