UK Keratoconus Self-Help and Support Association

Am desperate, my son who is just 18 was diagnosed with KC early this year. (I also have KC but not as severe and am able to cope with glasses) He was fitted with Gas Permiable contact lenses 3 weeks ago by an eye hospital in London. Unfortunately, despite extremely careful handling, one of them snapped yesterday. We rang the hospital and were told that he would have to wait TWO WEEKS for a replacement lens. As he is unable to drive, see the computer etc etc I asked the hospital if they could send me a copy of the prescription in order that I could get another lens from local optician. No."Brick Wall" syndrome. We have to wait until we next see the consultant so as he can authorise it! My son is only just getting used to the lenses, coping well and being really really positive about the whole thing. He will now have to wait 2 weeks and have to get used to them all over again. Don't know what to do as obviously this could happen again and he can't put his life on hold each time it does. Sorry to ramble but any support, ideas out there would be SO appreciated.

Hello Sharon, and welcome to the forum!

Sorry to hear about the damaged lens, and you seem to have done the right things so far.

It is very frustrating to be without your lenses, but there is a solution: get your son to continue to wear the only lens that he has.

It sounds really weird, and he may not be able to drive, but he may also be able to see better than with specs (or without). He also won't have to readjust for lenses for both eyes (although readjustment periods to wearing lenses are often much quicker than getting used to a lens for the first time).

You may also find that, especially if the RGP lens is something "special" like a ROSE K or similar, that the "We can make your contact lenses in 2 hours" won't be able to live up to their promise anyway. Only a small percentage of the population wear RGP lenses at all these days, and the quick-profit outlets are really not generally geared up to look after us.

Hope this helps, but please feel free to have a moan here. We all know how your son feels!

Hi John
Thankyou so much for replying to my moan! It helps so much knowing there are others "out there"! Especially as I have never been on any "Discussion forums" ever before!
Will pass your suggestion on to my son, well worth a try and your comments about the quick-profit outlets do make sense. He has KC in both eyes, the broken lens being for the most affected eye(isn't it always the way?!) but don't know if either of them are a ROSE K and also don't know what a ROSE k lens is either! I just feel so lucky that my KC never got any worse.
Thanks for you support

Sharon

There is no reason why they cannot give your son the Prescription Data..I am not sure which Eye Clinic he attends, but I would suspect that they may have fobbed you off with the "you need to see the consultant" as there on shaky ground legaly if they deny you access to this bit of data...but we wont go there!

If it it really urgent, visit the eye clinic and make it clear that your son cannot function without the lens, and you are merely asking for the lens prescription as a tactical solution for the interim until he has been seen again........that should more than likely get someone to get off their backside, go to the notes and give you a copy.

MOOREFIELDS are really bad at this! If you fone them, 9/10 times they will say theyll fax it and noone will!...I call it PSLS! - Public Sector Laziness Syndrome!

Jay

Sharon,

It is relatively easy to get used to wearing just the one lens.

For me it was a matter of weeks but I was alternating which eye I could see out of so that I had enough vision to see to drive and so I had useful vision for a longer period of time.

Prior to doing this however the optician did check to ensure my monocular visionw as up to the required standard.

For my own piece of mind I retook my Institute of Advance Motoring test and it was not until the end the examiner found out I could not see out of one eye! Still passed with flying colours.

Thank you all for your replies, has given me the courage to ring (yes it is MOORFIELDS) yet again and ask for copy of the prescription. Have been put onto the "Supervisor" who is going to put notes before the Consultant to see if he will agree. Problem seems to be that they haven't seen my son since the initial fitting, seems strange that they are willing to send a lens but not the prescription! Apparently the other lens (which is not broken thank goodness) can ONLY be made up by Moorfields so lets hope this never breaks. They are going to ring me back with the reply ............watch this space, so will update when I hear.
Thankyou all once again, don't feel so alone now.

SUCCESS (well almost not actually recieved prescription yet!) Moorfields have just rung back and reluctantly agreed to post off my sons prescription, the Consultant will be marking it with a disclaimer or something apparently, but am SO pleased I tried again. Thank you all for your ideas and support.
Sharon

thats excellent!...Just keep tab on how long it takes to arrive...if you havent got it within the next 3 odd days..or say Tuesday give them a call.....again...as it may be that by the time you get it your son will have another appt.....but hopefully that wont be the case

Hello there and welcome to the forum!

This politics are so dam frustrating i know! I am also a patient at Moorfields but went privately for a graft. I have only ever worn lenses in one eye and have managed very well from the age of 14, (i'm now 30). Only now i am trying post graft with the other eye, so i hope that your son will manage with one lens for the moment.

When he has found lenses that fit and give him good vision it is a good idea to get a spare one made up. For me this was never a problem money wise as i have only ever paid for one! But i know that for some buying two spare lenses could be a problem, but it does help if something like this ever happens again.

Hoping you get some success with the prescription soon!

Sweet X x X

I broke a lens for the first time ever last year. Broke so easily I'm amazed it hadn't happened before.

As it happened I just been back for a check a week or so before and they'd changed my prescription and ordered a new lens so about two days after I broke the old one, the new one arrived. How lucky was that for timing.

Hope your son gets sorted soon. Having a spare pair even if it's an older prescription may be the safest way.