UK Keratoconus Self-Help and Support Association

Hi everyone. I live in Preston, Lancashire and went to the Royal Preston Hospital last week. The consultant said he didn't think that Intacs were currently available on the NHS. If it wasn't for this forum I wouldn't know any different. Are there any NHS hospitals (or private ones that treat NHS patients) that do Intacs in my area?

Also I've head that some NHS hospitals are trailing C3R/CXL. Are there any near me? Can I have Intacs fitted and then C3R at a later date? lizb said in one of her posts that her consultant didn't like fitting both Intacs and C3R at once. Is this a common concern? If so which should I have done first?

Either way it looks like I will need to get referred to a different hospital.

Hi Kev and welcome to the forum!
I'm pretty sure the Manchester Royal Eye Hospital are now doing Intacs on the NHS. Also Sheffield and St Paul's in Liverpool. Other people in the NW may have more up to date information. Your tag line says you're coping without lenses or glasses. Is that because you couldn't tolerate contact lenses? There's quite a variety of contact lenses that can be used for KC these days so people who can't tolerate the rigid corneal lenses that most with KC use do have other options such as special soft lenses for KC, piggy backing a soft lens under a hard lens, scleral lenses or semi sclerals such as SoClears, and hybrid lenses (hard centre soft skirt). So if you get referred to another hospital, it might be worth investigating lens options before deciding on a surgical intervention.
I don't know about any crosslinking trials in the NW, but again local people may know more. And now that NICE have issued guidance on crosslinking, it's likely that there will be more trials in the near future.
Good luck
Anne

Hi Anne,

Yes I can't tolerate the RGP contact lenses I've been proscribed. Its only bad in my left eye, so I don't even try any more. That said I went through a phase of wearing them for a couple of months, then stopped when I got an eye infection. I found the discomfort and sensitivity to light (strange it doesn't bother me when not wearing the lens) to much to cope with. I read on this forum that there are new soft lenses for KC. Can these work for more advanced KC? I'm hoping Intacs will make it easier to get a comfortable fit.

Thanks,
Kev

Hey Kev82, i am also under RPH for KC on the nhs so take all the info along about treatments for KC - they dont have much of a clue, my file includes printouts from this site about different treatment options as one doctor I saw there (youngish guy, still was dr rather then mr) didnt have a clue about KC and the impact of KC on life. Whose clinic are you under?

Have you been referred outside the hospital for Contact Lenses? Is it the place on friargate? If it is, then they are great in there and are great as a first port of call if you have any concerns about your eyes, any of the staff in there at least have some understanding of KC and the problems with face.
I have found that RPH dont seem to be bothered if we can manage with glasses at all, even in resolving dry eye to enable CL wear, so you really have to keep pushing them.

I have gone privately for CXL (C3R) and am looking at going privately for intacs shortly at the same place, partly as they know my eyes now. Yes i could try and push for intacs on the nhs, but it is less convienent for me (even travelling to the south east for private treatment) to try and establish a relationship with another nhs hospital when rph have diminshed my own belief.

Hi lizb. Yes I read about you CXL treatment. Hows your vision now? I know what you mean about having to push, but I don't think I could afford to go private I've got a house to buy! And why should you have to pay if some NHS PCTs are doing them? If Intacs are all I can get for now I'll do that and get the CXL when it becomes available.

I'm under Mr Vose's clinic. I'll ask him to refer me to an optician if I don't get anywhere with Intacs.

I've just checked out the Manchester Royal Eye Hospital's website, they do fit Intacs for KC I'll ask if they do it on the NHS tomorrow. So which NHS hospitals are doing C3R?

Thanks,
Kev

Kev

The cover of CxL in the NHS is still patchy; many hospitals are running trials under strict ethics protocols, but it cannot be long now before the procedure is more generally available. My guess is that when NICE give the green light most parts of England and Wales will be covered by a regional centre that offers this procedure.

Andrew

You are in a different clinic to me, i am under Ekdawy's clinic - though looking at what each guy's specialities i suspect you are in a better clinic than me - may query that with them next time i am there.

So who has fitted you with your RGPs? did the hospital do that? there are other options that are available to try, including some of the kerasoft and synergyes lenses. I have been tried with both through the NHS, though my problem with dry eye conteracts any good fit with any CL.

Kev,

your situation with RGP lenses sounds similar to mine, while wearing them I had light sensitive issues, without no light problems.

I've been wearing specialist soft lenses for KC, the Kerasoft lenses for the past 12 months, initially the K3, but later the KIC as they were being developed and they give me perfect vision and I wear them all my waking hours seven days a week.

Thanks for all the responses.

Andrew: So I guess to get the CXL treatment I would need to prove it would be unethical to withhold it from me? I don't think I could win that argument with my eyesight in my right eye being good, but isn't CXL supposed to stop the KC from progressing? Is it possible to have CXL after the Intacs?

lizb: I don't know how much better my clinic would be, they didn't know I could have Intacs on the NHS. No I used to be under Royal Oldham Hospital and they referred me to David Auerbach in Manchester for my contact lenses. He tried lost of different RGPs (He might have also tried a semi sclerals) and hybrid lenses.

Gareth: I'm interested in these soft lenses, but I noticed your tag line says you've had graft(s). Would it not have been possible to use them prior to your graft(s)?

I get the feeling people on here would suggest I exhaust my choices of contact lenses, before I get Intacs. Isn't there a risk that I may not be able to have Intacs if I wait too long? My family often nag me to try lenses again and they often say that surely wearing lenses might prevent/slow the progression of my KC. Do you think there is any truth in this?

Kev

Kev How long ago did you try CL? There have been massive leaps in softer lenses being available for KC. Ask RPH to try and fit you with CL, chances are you will be referred out of the hospital to a practice for fitting CL that RPH use (still on the NHS, just outsourced from the hospital - easier to get quick appointments and at least understand the impact of KC). The practice i was referred to, as mentioned in an earlier post, have a range of soft and hybrid lenses, though they are likely to try you with RGPs initially, unless you can get your notes from the previous fittings.