Newbie with questions

[Chris Rogers]

Hello everybody,

I was diagnosed with KC a few years ago (I'm 27) , but was getting on OK with soft contacts until I was told at a routine hospital appointment that I couldn't drive anymore. I wasn't expecting that so soon!
Anyway, that was back in October and its been almost 7 months, 4 appts. and still no hard contact lenses (although the optometrist says he will be able to fit some). Think its been a bit tricky to fit some cos I've got scarring on my left eye.

Is it normal to have to wait this long on the NHS?
Has anyone gone private to get some fitted and any idea how much that would cost? Would it be any quicker?

I'm getting pretty frustrated at not being able to drive, but the worst is reading things. My eyesight varies a bit but sometimes I need to hold the words about two inches from my right eye in order to read them!
I just want some contacts, is that too much to ask?!!

Thanks,

Chris

[jayuk]

Chris

Welcome to the forum!

To answer your questions

Is it normal to have to wait this long on the NHS?

It does depend on where you live, and who you are seen by....but do expect a wait between visits.....dispensing Lens shouldnt take longer than 4-5 weeks......but its the inbetween fitting sessions that take up most of the time


Has anyone gone private to get some fitted and any idea how much that would cost?

Yes, I have. From the initial onset of KC I was seen by a very good Optometrist in London, whom I stayed with and have done over the past 11 years. When it got to a stage where I needed Sclerals I went to see the best person, Ken Pullum via the NHS route......However..when Scleral lenses could no longer help me....I reverted back to Private Lens fitting with my Optom. When I wasnt getting good succes there (due to the advancement of my KC Cone) I went to see other Opticians whom had experience in particular lenses etc........Yes it costs money....Yes you get seen VERY fast and YES its a whole lot better.......However....my views and thoughts around my KC is about the gain I can get from making an investment...to NOT making an investment and suffering. I got fed up of the NHS system and the long wait and had to pay myself to actually get seen and also allow me to work.


Would it be any quicker?

Yes, if you pay you generally get seen when you want to...(IE..appointments around when you are available)

However, dont let that put you off! Many on this board whom are out of London do get seen within acceptable times and have managed very well with the system. The main issues arise when the KC gets advanced and the cornea changes ever 2-4 weeks.....than, in my opinion, the system fails......

Hope that helps

Jay

[GarethB]

Chris,

I live in Warwickshire, which hospita are you at?

I go to Cov and Warwick and Saresh was very good at fitting my lenses. From being refered to the contact lens clinic from my initial visit it was 4 weeks.

My initila visit I saw the optom and then Mr Smith and they too told me I was unfit to drive and this was 16 years post grfat (18 years now).

Saresh managed to find a lens that fitted on my first visit to see him, we did try four lenses in total and four weeks after that I was able to collect them. Total time 8 weeks, I have had the same lenses for 18 months now.

Saresh did the first few lens follow ups, but since the fitting was considerd OK, Adrian has done all the follow up and he says I am on the limit of his lens expertease.

My fitting is hard and basically if the lenses I am on stop doing the job it is highly likely that I will have to give up seeing. The hospital was prepared for that last christmas, but finding the right eye drops helped.

Cov & Warwick are one of the better hospitals, the lenses take 2 weeks to get to them from point or ordering to being received through the hospital system. As the hospital is very busy they can only get to see people routinely every 4 weeks.

Until my last visit last Tuedsday I was at the contact lens clinic every month for the past 7 months so if you are at Cov & Warwick I am surprised you have only had 4 appts to my 7 in the same period.

In brief;

What hospita are you going to?
Who is the opthalmologist?
Who is your optician?

Regards

Gareth

[Jan Miles]

Ken Pullum fits my lenses privately. I also see him at Moorfields and then found his private practice. Well worth the trip to his place in Hertford. He has made me the most comfy lenses ive ever had. If you lose or break one, a new one can be made and posted out to you in a matter of days not months like the NHS.

He's a great man with an empathy for KC sufferers.

[Chris Rogers]

Thanks for the quick reponse, its really great to talk to people who know stuff about KC.

Jay - thanks for the info, very helpful, I think I'll look into it since I'm finding it increasingly hard at work and need things to speed up. By the way, I don't know much about scleral lenses, are they much better than hard contacts? I've heard they are much more expensive (if you go private) but don't know why.

Gareth - until recently I lived in Birmingham and was being seen at Selly Oak hospital by Mike Beaver. I've moved to Stratford now and have been referred to Warwick hospital to see Mr Pawson (under G. Misson), although he is off work due to injury at the moment so my first appt. with him was cancelled.

At Selly Oak only one lens was tried at each appt. and only for the left eye (the worst one). This seems to be a bit strange to me since why not do both at the same time? I don't know much about the details of fitting contacts so maybe there is some reason, recently stuff I've read makes it seem like it might be more complicated than I thought.

Cheers,

Chris

[jayuk]

Chris

Sclerals are alot bigger and basically sit on the Sclera of the eye and thus provide a better and more comfortable fit.

They are expensive as part of the process of making them is done by hand and it takes a while!

HTH

Jay