UK Keratoconus Self-Help and Support Association

After 5 years of rgp agony I'm at my wits end over them. My first NHS specialist wouldn't go down that route and when I pushed for alternatives to rgp's he ended up referring me for cross linking. I was surprised as I'm late forties.
The new specialist at a different hospital said it wasnt an option due to my age and referred me to his contact Specialist. He's managed to get a better fit with the rgp's but the wear time has decreased over time and now I'm not getting more than 4 hours a day at which point my eyes are so sore.
My KC isn't too bad compared with some and I do get fairly good vision with my glasses so wearing them a lot more.

I like the vision of the rgp's and the overall convenience of contacts.

I'm desperate to try hybrids or anything else, so looking for a practioner in London or Kent.

I'm not sure why the NHS has been so resistant to let me try them of it comes down to their limited funding ??

So where can I go for private treatment specifically for hybrids ?

Any recommendations ?

Thanks

Limited funding could be an issue in that rgps are the cheapest option in term of lenses, although it's also true to say that they work very well for the majority of people with KC. Have you seen our list of KC friendly optometrists http://www.keratoconus-group.org.uk/optoms/index.php You should find a practice there that will be able to help. Other options that could work for you would be mini or semi sclerals or piggy-backing (wearing a soft lens underneath an rgp).
It's good that glasses give you reasonable vision so you don't need to force rgps on your eyes when they're protesting!

Just to add to Anne's post I do think that it would be worth trying piggybacking.

I wear piggyback lenses and have done so for about five or six years. On a bad day the wearing time of my right RGP was down to as little as an hour before I had to take it out. I had other old RGPs which I could wear for all day but either the vision was not as good or the optom didn't like the fit. But the lens with the good vision and, I was assured, a good fit was impossible to wear. The difference with a soft lens underneath is amazing. I can now wear the lens 15 hours a day with no problem.

It may be possible to try piggybacking your current RGPs. The soft lens I have has a power of -½ dioptre which as it is underneath the RGP doesn't affect the power of the RGP. It would certainly be worth asking about piggybacking your current RGPs especially as you like the vision they give you.

As for hybrids I've yet to meet anyone who uses them. I did go to a talk earlier in the year explaining the recent developments with their design so they are likely to become more common. They were described to us as more comfortable than an RGP but not as comfortable as a soft lens.

Lia

Thanks for the replies. I'm interested in trying the piggyback option.

So I could just order any old daily soft with that dipotre and it should be ok ? I did suggest it to the specialist last time but pushed me back to the rgp option grrr.

What soft lenses are you using Lia ?

Thanks

I don't think 'any old soft lens' would work. Because one is wearing two lenses the lens needs to have high oxygen permeability. Also some people find +½ dioptre works better than -½ dioptre.

I'm currently using Clariti 1 day, but in the past I have used Proclear 1 day and Acuvue True-Eye. The optoms at the hospital chose the soft lens which worked best for me with my RGPs. As with RGPs different lenses work for different people. When I started piggy backing I was monitored quite closely to monitor blood vessel growth which can occasionally occur when one starts piggybacking; fortunately for me there wasn't problem.

Lia

Ok cool, I'm due a visit to the hospital soon hence the timing of this post. I want to go armed with some up to date information to bolster my argument for a different system.
Thanks for the info.

Well after my last visit to my specialist back in May he seemed to think i dont produce enough moisture in my tears. He only said this after i insisted on trying something else after 5 years of not getting on with rgps.he mentioned we could try mini sceneries but referred me to someone to look at my tears. Since then every appointment has been changed and now the last change today is for the end of November!
When I said about changing lenses it was obvious I was being fobbed off by the body language displayed and now it appears I was correct.
I can only assume the budgets don't allow for these types of lenses ?

I can't keep waiting half a year for an appointment so it appears I have to go private. Does anyone have any idea of costs for mini scelerals going the private route ?

Are any practitioners on this forum I can use ? I'm in se London.

Sorry, I don't know what the costs are, but for practitioners, have you looked at the list on our website (the link was in my first post in reply to you).

Hi I did look at the link and have now booked up to see a private practioner and see where that road leads me.
I did laugh the other day as the hospital rang me to see when I will be seeing the tear specialist, they went quiet when I pointed out they keep cancelling the appointments !

I see the private guy in a couple of weeks and over the phone he talked about a possible referral to another hospital.

I shall report back after that appointment.