UK Keratoconus Self-Help and Support Association

Now I've suddenly thought you probably wont be able to help but I am desperate. I was diagnosed with KC about 20 years ago but have always managed well with RGP lenses so after about 25 I didn't bother to register with hospitals every time I moved I now live in London and have had a very hard time getting a decent high street optician. Each one I speak to knows nothing about KC and when the lenses don't fit thinks I'm making it up. The only advice I've had so far is to get a referral from my GP (don't have one) to Moorfields and get the lenses from there but that could take months and in the meantime I need some lenses that fit. Can anyone recommmend an opticians that is any good - please

Hi Liam,

In the members area which you need to log in, the group has compiled a list of opticians. If you join the support group, all they ask for is a donation and you will be sent loads of information and will then be able to look up the opticians many of us here use.

Support group Contacts

It is 13 years since I visited an optom in London, but they were in the shoping centre in Stratford near the undergound. Otherwise a trip out to Hitchin to see Ali Akay who is an optician that posts here. The town centre is easy to get to from Hitchin train station.

I am afraid this is the best I can do otherwise you will have to do what you are doing, call the opticians and ask them the question. Many of us have found it better to avoid the main hight street chains when it comes to KC care.

Please be aware that depending on your level of KC the opticians who do know about KC may not have a wide range of lenses to be able to fit you well as a hospital eye unit. This is down to the costs involved with having a comprehensive lens fitting kit and the relative rarety of KC.

Regards

Gareth

Liam

I would just a couple of things to what Gareth is saying. Firstly say what part of London you are in as its a big place!

Secondly, hopefully this is something that is being worked on from the other side. ie I am trying to sort out setting up a national list of opticians who do specialise in KC. This won't guarantee you would be happy with all of them, but at least you will be searching in the right ballpark!

This won't help you right here and now obviously but as I said, if you say where you are, others may be able to help you better with reccomendations.

Lynn

Hey there Liam, welcome to the forum!

As Lynn says London is a big place! I have been here for two years but am still stuck with trying to find someone to see for new lenses, so i still keep in touch with my optom back in South Wales.

I am now in Moorfields and got my last contact lens through them. Before that though i did see an optom in central London, Andrew Gasson though i didn't get any lenses from him as i went to see a surgeon a few weeks afterwards and went through with a graft. He is a specialist in lenses though and has some experience with KC though i am not sure how much that is. The one thing i did like though was that you get a topograph routinely which a lot of optoms don't have the equipment for so this is a good first step! His waiting list is really short as well, i phoned in at the beginning of the week and got an appointment two days later

His address is:-

6 De Walden Street
London
W1G 8RL

Tel:- 020 72245959
Fax:- 020 7935 7629

He might have a website but i can't remember now! Though i know he is in the yellow pages if you need the advert. Hoping you find someone soon!

Sweet X x X

Hi,

I'm also new to this forum, but i'm in the process of becoming a full member. I have the same issue of finding an optician in my area. I live in Hillingdon, West London so if anyone can recommend someone in this area, i'd really appreciate it.

Thanks
Emma

Liam

I agree with one of the previous posts...if you can let us know where abouts in London you are...that may be better....whilst there are numerous Opticians in London; do bear in mind that many of them do not have the skills and experience in fitting anything above mild Kerataconus.. (if that!)

J

Emma and Liam

Welcome to you both!

Liam

alongside your efforts to get in touch with a KC friendly optometrist, I'd also initiate the procedure to get registered with your local Ophthalmology unit. You may never need surgery, but if you do have an emergency it would be quite helpful for the ophthalmologist you see to have your notes in front of him or her.

Emma

All the best with your search, too.

Andrew

Thanks everyone for your advice - I live in Islington but really don't mind travelling if anyone knows anyone decent. I'm supposed to get registered at Moorfields and I guess will get round to it I've been lulled into a sense of security because I've been stable for so long!

Liam

Moorfields has a very good reputation here. I think they have a contact lens department, too.

Andrew

Liam i would get registered as soon as possible as there is a very long wait. Your GP will send a referral to them but it could be six months or more before they have an appt to see you to put you on the system. It took me a year but i was coming from Wales. You might not need them now but when you do you don't need the hassle of getting registered.

Sweet X x X