UK Keratoconus Self-Help and Support Association

Hi I'll start at the beginning! A few months ago I had an appointment at my hospital for keratoconus diagnoses and a scan to see if I'm eligible for CXL. At the time I was just wearing glasses, but I found driving and watching TV hard so inquired about contacts. I was told to see my regular optician...

My regular optician wouldn't take it on, so I found a specialist through the list provided on here. Today, I had my initial fitting, and I found out the cost... £375 for a set (plus £30 fitting per time) for Kerasoft IC.

This... astounded me, as it was much higher than I thought. I knew I was going to be paying higher than the £54 other people seem to be paying on here, but I'm not really sure why?

I went back to the hospital today and asked to speak to the manager which I did. I asked why I was told to go to a regular optician and why I wasn't getting these on the NHS for the reduced price. She said they don't have a contact fitting service and doesn't know who does. She said she's going to speak to someone else and get back to me... but they couldn't provide any other information to help me for the time being.

I know I'm going to get stung this time for the £375 as obviously they're on order etc. now but what I want to know is what is the procedure, and where can I go in Essex to get future sets for £54? I really can't afford the higher price this time, let alone every 12 months or so.

Thanks

It's currently £54.70 per lens so £109.40 for a pair on the NHS but still a heck of a lot less than you're going to pay privately. If the hospital can't/won't fit contacts can you ask them about a referral to somewhere that does?

The other question I'd be asking the specialist is what happens if they don't fit correctly? Or the prescription needs changing slightly? My experience of both Kerasofts and RGPs via the NHS is of multiple visits and multiple lens ordered and returned to get the best results possible.

£30 per time fitting, I've had two already... one or two more to go he reckons. I'll only have to pay for the actual lenses once, one hopes!

I asked about a referral and just got blank looks hopefully I will hear back from them but I won't hold my breath, they are pretty useless.

Well I did get a call back and they've managed to sort something out for me! As long as I can cancel my Kerasoft I can go with the NHS for cheaper... brilliant.

But I do have another question. After trying Kerasoft I can tell my shadowing etc. isn't going to be any better than my glasses. I'm wondering if I should just skip that stage completely and go for hybrid lenses? Do the NHS even provide these? Thanks.

The NHS do offer piggybacks - I've had them for a few months.

CrippsCorner wrote:After trying Kerasoft I can tell my shadowing etc. isn't going to be any better than my glasses.

It can also be a case of the lens just needing a minor tweek, I have found over the years with trying other lenses that this occurs with them too.

Some optomotrists rush the fitting and settle with what you can see on the chart without considering the shadows etc. so when I have lens fittings and the new lens doesn't work as we expect, I always make sure they give it at least three more goes to finely tweek the prescription and most the time we resolve the initial issues to an accdeptable level.

So get the optom to check the lens orientation is within acceptable limits, moving correctly, comfortable for you and recheck the vision.

The thing is my (now-previous) optometrist told me that my vision would be almost as good as my glasses with Kerasoft. He said I'd never get rid of the shadowing/double vision without a hybrid or RGP lens to correct it. Also, in my right eye he said the prescription was almost perfect, I had 20/20 vision! But... the shadowing was absolutely awful I could see the lines on the chart inches below where they really were I just don't know if it's even worth changing from glasses if that's as good as the soft lenses get.

I was always told that soft lenses would never be as good as RGP, piggy backs, sclerals etc.

They were completly wrong, my vision is far better than it ever wa with any RGP lens. The bottom line is that we are all different and unless you actually try a particular lens, you will never know if it actually has soemthing to offer.

I wonder if it's anything related to you being post-graft? Most YouTube videos I've seen from Kerasoft are more related to your use case than mine.

Whilst I'm at it I'd like to chuck another question in the mix. It seems that most people with hybrids/RGPs can't get a whole day out of them... can you switch from those contacts to glasses in the same day? I've read that it takes a while for your eyes to adjust back, so what do you do? Also, if people are switching between the two, do you find it easier to use the contacts throughout the day for driving and work etc. then relax with glasses when you get home, or the other way round?

Thanks.