UK Keratoconus Self-Help and Support Association

so my RGP on piggybacks combo is starting to irritate more and more, and my vision has started deteriorating on them (most txt has clear shadow repeat underneath, finding it hard at work, excel is a mess!)

called sutton eye hospital, cant be seen till 8th september.

its so frustrating how long it takes in the hospital system, i now have to spend over 6 weeks with sore eyes and weak vision as its not an emergency as such, then wait another 2 or 3 weeks before i maybe receive lenses that might help (if they fit properly)

Would it not be great if high street opticians had a clue about KC and could monitor and sort out your lenses for you with appoinments available in a week of twos time instead of having to go through the archaic and extremely slow (in my experience) public health service.....grrrrr

I guess in some respects that i am lucky. My hospital outsources all its KC contact lens fitting to a local independant high street opticians, so i get the quick service of a contact lens fitter, all the optomertrists (sp?) understand KC, and the difficulties we face, for when we have general eye appointments, and CL appointments are available in a lot quicker time frame than other hospitals. The downside to this is that your CL fitting notes dont get sent back to the hospital and the CL fitter doesnt get to see your hospital notes. You have to remember what each person has said and relay it back to the other.

Another problem is that now i have my Dry Eye isnt being coped with by lubricating solutions/artificial tears my opticians cant get me into the eye clinic without refering me back to the hospital through my GP, even though i am already on the books at the eye clinic and have (at least) an annual check up with them for KC.

The other problem i have is that my hospital isnt a specialist eye hospital so therefore dont actaully have much of a clue about KC anyhow.

Was it after a visit to eye casualty it was determined that you case is non urgent?

If not, then I'd go to eye casualty to make sure there are no other underlying problems making the lenses uncomfortable.

There are many KC friendly optoms, there is a list in the members area, if you are on the KC group mailing list you should have in one of the newsletters the access password required. Down side is you can pay a lot in the time it takes to resolve any issues you may have and if lens fitting isn't contracted out to them you probably end up paying full price for lenses which can be many hundreds of pounds for a single lens.

Yes it is frustrating...

There are many High Street optoms who would be glad to help.. but they are not contracted to the hospital. If you are seen by a hospital and pay hospital subsidised rates, then you have to abide by the appointment system. As Gareth says, if you get your lenses on the High Street, you will pay full market price for it. The choice is yours really..

It is not an ideal situation and there is really no reason why there cannot be some sort of shared care system as there is for diabetes, cataract and glaucoma. If there is a will there is a way... but unless keratoconics push the system, it will not change.

I do sympathise!

Lynn