Two Cheers for the Miracle that is Modern Medicine...

[longhoc]

... one "hiss" for the appallingly fragmented system it has to operate within in this country !

Had my graft a year ago tomorrow, stitches out last week -- and I knew immediately that my left eye vision was hugely improved. Tried on a very old pair of glasses and could actually see car number plates at about 10 meters, TV credits and so on -- very exciting as before I couldn't see anything useful, only colour and movement. I did stop for a few minutes in the supermarket earlier (of all places) and thought for a minute about how lucky, blessed even, we are to have the benefit of today's advances in science and technology -- and the tireless work of all the professionals who bring it to us. So often I forget, cursing the day-to-day hassles of Keratoconus. But I'm glad I'm around in 2012 and not in 1962.

It was all of course just subjective, so I went along on spec to a high street optician this afternoon to find out exactly what I was able to get with glasses with an accurately calculated prescription.

That's when the reality of how disconnected health care, especially eye health, is in this country hit me. I felt really sorry for the optometrist. There they were, one minute quite happily sitting with a cup of tea or whatever, then in walked I, straight in off the street and presented them with what they'd probably politely describe as an atypical customer. They'd never seen me before, so had to get all my details logged... bilateral Keratoconus, right eye moderate, managed with RGPs, left eye severe, post-graft, post suture removal, still might take another year to stabilise, right eye looked after by a specialist optometrist, left eye still under care of ophthalmologist, but wanted to try glasses just to find out... If their line of work is anything like mine, failure to keep proper records is a hanging offence, so it all had to be noted down... First off then, how much easier it would have been if they'd had access to my medical records -- they could have read them then and there, not had to rely on flaky (I tried not to be, but I had to edit information for the sake of brevity) patient-provided details and simply added their notes to the small encyclopaedia that is probably my medical history file.

That bit over, there I was in the big chair saying, basically, "okay, sort me out a nice lens then". But then I realised that the optometrist was starting from nothing. It was pretty tricky -- for them and me -- to go through all the various parameters (I didn't know quite how many there are, "cylinder" "axis" "power" and a whole load of others I didn't remember). And all this on a patient who still had some residual distortion because after all, the stitches only came out a week ago.

Eventually I got the forth line down clearly. Now that might not sound like much to you, but to me it was indeed a miracle. A year ago, I couldn't see the first line very clearly with glasses. Even with a truly horrid RGP I barely managed the fifth, and with a nice comfy Kerasoft I got the fourth line but that was about it. And as my cornea still looks a bit like Frankenstein's monster's head, I'd hope that it can only get better from there.

That said, I did feel that there might have been a little more which could have been done. It wasn't spelled out, but I'd had my 45 minutes in the chair and with other customers waiting, the optometrist seemingly had to take a "that's best that we can do" approach. Which got me wondering, would I have done the right thing to go to the refractions team in the hospital ? Would they have found it easier to get a refraction and sort out a lens ? Do optometrists in hospital clinics and so on get "better" at sorting out lens prescriptions for Keratoconus patients because it does require more experience, training etc ? Do specialist clinics have access to non-standard equipment which can assist with this ? But given I dearly want to get back mainstream management of my condition for reasons of convenience and ease of access, is it being unrealistic to wonder if a high-street optician could do this ? If not, do I have to bring Primary Care back into the equation ? My GP really doesn't bring much to the party in respect of my Keratoconus, and to be fair, that's probably the right thing to do because specialist eye procedures are out of their realm. But if not them, who do I get good advice from ?

The £170-odd bill for a new lens made me aware that the cost recovery part of a high street optician's business simply doesn't allow for more "chair time" nor does it encourage them to take on complex cases. They operate on an essentially fixed-fee basis, getting their time paid for out of the eventual sale of glasses, contact lenses or frames (or all three). And they own the risk that I could have simply walked out the door without giving them a penny, save for the completely uneconomic NHS sight test fee. So I'm not at all convinced that managing my post-graft vision on the high street is viable. But what then is the best thing to do ? While I'm more than happy to pay pretty much whatever to get the best quality care, given that any glasses lens(-es) I do get is/are going to be essentially a "throw away" thing for the next year, doesn't seem the most sensible way of going about things.

Lots more questions than answers for me then.

Anyhow, mustn't dwell on the negative, I asked the dispensing optician to order up the new lens for my left eye, and I'll be glad of my 20/50-ish glasses BCVA.

Chris

[GarethB]

High street optoms only have the range of lenses for a 'typical person' that would walk in heir door which we are not. Hospitals have a larger variety of elnses to cover the more extremes.

The NHS does have its fault but that said we in the UK are in a better position than many of our Europen counterparts who have no access to an NHS system and have to pay for their KC treatment, provate health care plans are available but as in the UK, many exclude conditions such as KC. So far I have encountered that in Netherlands, Belgium and Germany there are no contact lens clinics in the hospitals, everyhting is managed by your friendly highstreet optometrist. It is for that reason that although I technically work in Belgium now, I spend as much time in the UK and pay my taxes to continue to get the benefits of the NHS that have looked after my KC on and off for the past 25 years.

Even now over 20 years post graft, I still notice things that I was unable to see before my grafts and think how lucky I am and for me it was 16 years before I needed contact lenses again, before that it was a period with glasses followed by a period with no glasses before returning to glasses and the eventual contact lenses.

I hope your grafts continue to improve and you get the full benefits that I feel I have gained from mine.

[Anne Klepacz]

Delighted with your result, Chris. And hopefully things will continue to improve. On the fragmented system - the aim is for our medical records to be easily accessible online for all the health professionals that might need access to them. But that aim has been around for some time now, and quite how long it will take to achieve.....
As for getting post graft glasses from a hospital or a High Street opticians, I've done both. In the initial post grafts period, when my vision was changing quite a bit, I got my glasses from the hospital clinic.
My first experience of trying to get glasses on the High Street was a disaster - I paid several hundred pounds for a pair that I never wore. But then I discovered that my local Boots opticians happened to have an optom who had done her dissertation on KC and was delighted to see me. When I asked why she was prepared to devote so much chair time to me, she told me she enjoyed the challenge of a more complex pair of eyes and it was a change from all the routine work she normally did!
So that's where I now go for glasses (I basically wear contact lenses for best vision, but it's nice to have some glasses for when my eyes have had enough of cls at the end of the day or as back up). When making the appointment, I warn them I'll need a long appt and make it for late in the day, so that the glasses will work for my vision after I've taken the contact lenses out. And as the glasses still cost double what you paid, they're happy to carry on seeing me. So the answer to your question is that you need to shop around on the High Street and find someone with a genuine interest in KC (the list of optoms we have on this site would be a good start).
Good luck!
Anne

[longhoc]

Thanks a lot Gareth/Anne ! Wish I'd posted before going to the optician ! Will try out the new glasses and take a bit of time to find out how I get on with them, if I think that I can get a better outcome, I'll try the very good high street optometrist who managed my Keratoconus with RGPs a while back and ask if they're up for a challenge

If all that fails, will pester the hospital.

Best wishes

Chris