Kerasoft IC and K3 Trial

[pepepepe]

Again , your getting hold of the wrong end of the stick, I'm asking just, can someone get to try any lens they wish to, by just asking, considering in practice something other than what is tried may works better (for one reason because there are many lenses out there), when this is only really known once tried (with also looking at long term health taken in to consideration ie if there is long term results). I'm thinking there will be a dividing line, and wanted to know what that may be made of other than clinical need, does cost and the other things I posted come in the play ? (how may have tried Kerasoft on the NHS ? - it must be a lower amount than a higher amount to RGPs as there would be more wears by now if they where so good - but why isn't that the case ?)

[rosemary johnson]

I suspect that hospital departent vary - some are big, with many specialists and large amounts of stock (Gartnavel, for example); others are smaller with fewere KC'ers onthe books and less call for keeping CL experts on the staff with wide-ranging expertise.
Still others, including the one where I lived when I was a teenager and first diagnosed, in fact "contract out" contact lens fitting to local high street opticians.
It may be a bit of luck where you live and where you get referral to.
The other side of this is..... well, put it like this: I know someone who lives in Sunderland who has to trek down to London to Moorfields for his eye check-=up appointments. WHy he can't or doesn't get referred somewhere nearer, I do not know. (I should add, his problem is not KC.)
Who really wants to have to trek that far - and at that cost - to go to a hospital appointment? Maybe if one's local hospital is one of those who see very few KCers and thus only have a restricted CL service, going further afield may be worthwhile if finding lenses that fit well and give good vision is a problem. But if one can get on fine with the bog-standard ordinary ones, why inflict yourself with the extra time/cost/hassle of the travelling?
Again, it is the question - as with so many things in the world - that there are advantages to living in a centre of population density: there are likley to be enough people with you interests/problems/etc in a sufficiently small area to make it viable to have specialist services. Live out in a rural idyll you have lots of other advantages - peace and quiet, eautiful scenery, fresh air, fresh food straight from the farm door and maye lower crime - but you have to go further to get to somewhere with enough KCers around to get well-established specialist centres.
As regards offers of different types of lenses - well, it may well be that a person comes in and says "Can I try X lens?" and the speciailist may take one look at their eyes and know at once it won't work. Or they may look through their medical history and say "Well, your eyes look as if it should work, but we tried Type Y and you didn't get on with them, and generally ig Y doesn't work, then X won't ork either."
We are all so very different after all.
Incidentally, I was put straight into sclerals on first diagnosis at age 14. I have no idea why - it wasn't till I'd joined this group and been to several meetings I realised therwere KCers who could wear ordinary corneal lenses ( they were still all made of PMMA in those days, GP materials didn't come along till later). I'd somehow got the idea that all KCers hasd to wear sclerals as the ordinary corneal lenses wouldn't work for KC.
Rosemary

PS@ sorry for tping - no lenses in as both eyes feeling sore.

[GarethB]

My hospital is much smaller than theunit in Birmingham, but the lens clinic is extremely good. They do the old Kerasoft and K2's but they never considered for me due to grafts and the steepness of the right cornea. It was not until I'd heard of those that I asked the hospital about them and they gave it a go. Lenses did not work for me but that did initiate the strat of working more towards the K3 which as yet my hospital do not fit yet.

So if you ask about a paricular need the optoms will do there best to help from my experience. At my next visit I hope to go with the K3 lens and Lynn to persuade them that they are definitly a viable option.

It is the old story 'If you don't ask you don't get'.

The optoms I deal with are typical NHS and rushed off their feet and have said they have learnt more about nw treatments from my visits. They do get journals but like the rest of us they do have a life outside work and want to spend that time with their familys rather doing more work and reading journals. I know the feeling as that is the position I am in at work.

The group is trying to get invited to optom confrences but so far they ask stupid amounts of money for us to attend which as a group we just can not afford. If we could, we could push the ideas that get voiced on this forum.

[pepepepe]

Thanks guys for your insights, its posts like yours I was talking about. I bet there is dusty room somewhere in the NHS where they deal with stuff like this. May be there is a "fear of Knowledge" at the front line going on also.

[Andrew MacLean]

Rosemary

I was originally diagnosed when I lived in Aberdeen, and the contact lens service there was 'contracted out' in the way you describe. I was not aware that I got an impoverished service from the High Street Optometrist to whom I was referred.

Indeed, it was this High Street Optometrist who gave me the confidence to face the future with keratoconus. It was he who spent time with me, teaching me to put in and take out the lens before he did my refraction, so that nobody ever put a lens into my eye except me.

I am not sure that there was such a variety of lenses available back in those days, but I was aware that different lenses were being tried and as the first one or two were found unsuitable, we moved towards the selection of the lens that was going to suit me best.

You are probably right that the experience in hospitals will vary according to their workload, and the range of lenses kept for fitting purposes will vary also, but I do resist the tendency to blame hard working and professionally skilled optometrists when things go wrong. I have found over the years that equipped by the posts on the forum to ask questions when I go for my consultations, I have been able to suggest or enquire about options that were not being tried. This is, after all, a partnership where patient and eye care professional work together to secure the best outcome for the patient.

That said, there will be times when patients will ask about a treatment option that is just not right for them. The professional on the other side of the slit lamp, who can actually see the individual eye and may be well aware of the dangers of pursuing a particular request, is better placed than anyone else to advise.

I know of one member of the forum who told us that he had been denied access to a CXL trial. I know that he was disappointed at the time, but grateful now as he is more aware of the harm that might have been done if he had been included in the study.

Andrew

[rosemary johnson]

Andrew wasn't aware of being impoverished by being referred to a high st optician for lens fitting:
Of course not; why should you be??????
If you read my previous post as suggesting that as a second-class option - well, I certainly didn't intend it to be.
Having experienced both the system of lens fitting through a contracted-out arrangement at the optician/CL centre and the hospital CL clinic, I have to say that given the choice I would always and immediately opt for the former!
- assuming, of course, a level of expertise such as I've encountered in both.
I mean, who wants to travel great distances to be herded around like sheep by hospital admin, sit for hours in a dark and gloomy waiting room, with uncomfortable chairs and too dark to read, etc etc, when you could go ato a nice handy private practice Contact lens Centre, turn up at your appointment time and be seen punctually (and offered a complementary cup of tea in a real china cup and saucer if he's running late, unusually, for any reason), sit in a nice light airy waiting room, be greeted by friendly receptionists who know who you are and treat you as a valued customer (rather than a hospital number who like all hospital numbers is a nuisance in disrupting their ordered day); and get treated according to what can be done, rather than regularly running across what we'd like to do but the NHS bureaucracy can't handle.
Sorry, rant over - and actually, my private-practice contracted out guy who got me started in sclerals did ran into buffers of what NHS wouldn't do - though with the approach of "This would be a good idea, but the NHS won't fund it, so if you'd like to tak eit up it will be X pounds....." rather than "Well, it might be nice but we can't do it..."
Which in those days my parents had to think over....
Rosemary

[lars]

Rosemary
I know of one member of the forum who told us that he had been denied access to a CXL trial. I know that he was disappointed at the time, but grateful now as he is more aware of the harm that might have been done if he had been included in the study.
Andrew

Can you explain this potential harm please? Maybe in another thread, but I want to know what you mean,really.
Lars

[Andrew MacLean]

I think that would be done better by the member in person.

I haven't seen him here for a bit, but he does eMail me from time to time. I know that he has become very grateful to the team that excluded him from the trial, partly because of the potential for damage caused by UV shining through his very thin corneas and partly because of the risk of dry eye following the removal of his epithelium.

He may feel he can give more details himself; perhaps as you say in a different thread.

Andrew

[GarethB]

Not updated this for a while but then there is only so many times you can say everything is going well.

Had my regular check at the hospital and went with the K3's rather than the RGP's from the hospital. My optom is very understanding and checked me over anyway but will have to discuss with the powers that be if they would be able to manage my eyes with the K3 or if they could only go with RGP's because that is what they fitted me with. It's all about liabilities.

I feel now I am in a position to put an objective comparison between the RGP and K3 lens.



In all areas which are quantifiable you can see the benefits the K3 lean has brought to me are quite significant.

For me, I feel I have found the Holy Grail of contact lenses, all the vision, clarity and stability an RGP brings with all the comfort and weartime a soft lens brings to people who wear contact lenses for vanity. In adition their is a cost saving to me in how much I spend on cleaning solutions.

No more choosing when I want to see and for how long, no more getting grit behind the lens, and so it goes on. The current lens prescription I've had for about a month and to me it is stable so just need to monitor to make sure that is the case. The otehr benefit I found was the last set I managed to damage the edges but they were still more comfortable than an RGP and there was no change in vision.

The hospital want to discuss the K3 with lynn as they gave me the impression that perhaps when they have tried soft lenses before they have been too hasty in ruling them out. You get fitted using the trial set, collect the lens a month later and things seem Ok and then a follow up a month or too later and the patient see's nothing when really it was just the cornea settling and they needed only change the prescription on a monthly basis to allow the cornea to recover from the RGP lens where is can not be helped but put pressur on the cone in most cases.

Todays trip was extremely worth while and full of positives.

[pepepepe]

Form you posts while you was in RGPs you never said you had this much trouble with them and that everything was ok. So when you try another contact lens you may like them more than the Kerasofts you have now.

What are the cost comparisons ? in the price to buy RGPs and Kerasofts ? and how they compare in how long they both last or expected to last ? and infection deference's.

And what suits one will not suit another, you have to remember that.

And also, how come the NHS are not dishing them out if they are so good ?

Holy grail ????!