Kerasoft IC and K3 Trial

[pepepepe]

I hope we can get somewhere with the solutions we need as well - and a clinical decision on any change on the fittings of KC lenses for us, it may be the case for both these things to be done by case by case merit

Pepe

[Lynn White]

Pepe

I assume you mean getting free solutions on the NHS (which is actually supposed to happen under NHS regulations but doesn't actually in most cases). This is being ably handled by the Midlands group and it is a case of plugging away at the powers that be. I am not sure what you mean by the "clinical decision on any change on the fittings of KC lenses for us, it may be the case for both these things to be done by case by case merit"

As I said, the solution problem is a case of getting PCTs to honour obligations that currently exist. I am not sure what you mean by change of fittings? If you mean that a change in prescription because your KC has changed, this is NOT something that has been addressed before and would need an entirely new approach to change current regulations.

This is not as simple as it sounds. Currently, under NHS regulations, a patient has a "right" to have a subsidy for glasses or contact lenses if receiving certain types of benefit. The contact lens "HES" prescription is not a "right", it is a benefit conferred at the discretion of ophthalmologists (I have double checked this on behalf of the group). Thus a patient cannot take this form and get his/her contact lenses where he/she wishes and claim back the money - it has to be used at the clinic of attendance.

This can be frustrating in itself if the clinic you are attending is a great distance from your abode and you could conceivably order lenses locally. However, this is the law as it stands.

Changing contact lenses for free if your KC becomes variable is an interesting question. This would, though, require more "political" action from the group as to get any such change in regulations would require members to lobby MPs.

I know this all seems as if no-one is paying attention to common sense issues but this is how the NHS is. Just look at the controversy over NICE and cancer/Alzeimer drugs!

Lynn

[pepepepe]

My reply was to Gareth's post where I was saying that it depends by case by case merit which contact lens is the "best" for any one given situation.

The solutions problem : You get given now a one time pack of solutions when you first get contact lenses from the NHS ? and no more, is that right (?)

I think in one of Gareth posts he was saying that a hospital may not consider you having contact lenses as something you MUST need as many can with one eye correct to be able to see enough to get around. I am not saying this is right or wrong, just want are the details ? is it case by case merit ? should it be like that ? Is the NHS breaking the law ? I doubt it very much, it just needs to know a little better.

I am not too sure that the NHS is not following common sense, it does a good job and I don't like to bash it, its easy to, its national and profit don't get taken out of it, so it has to be careful, it is not selling nothing.

[Lynn White]

Hi Pepe

Theoretically, the NHS should provide ongoing contact lens solutions, not just the first set of solutions. Thisi is in the regulations but it gets interpreted differently by various PCTs (Primary Care Trusts).

Actually GETTING contact lenses is dependant on your NHS ophthalmologist signing forms to say you are entitled to lenses. There are no rules laid down for this - it is entirely the opinion of each ophthalmologist. Generally I would say that if an ophthalmologist was convinced you could get better vision with contact lenses they would sign off on it, so its not hard to get authorisation.

Generally, its not the getting authorisation that's the problem, its the time frame involved in fitting lenses. Many people find it can take up to a year to get fitted in a clinic as appointment times can be as much as 3 monthly intervals.

Lynn

[pepepepe]

They themselves are always looking at waiting times, its in their best interests to treat their patients more effectively so that waiting times are reduced enough where costs to them are lowered, both financially and the cost to the patients quality of life

[GarethB]

Day 39 - Tuesday (nearly six weeks)

Had my first proper check up since strating with these lenses and the VA was found to be

Right 6/7.5
Left 6/9

After over-refraction we were getting

Right 6/6 (+2)
Left 6/5
Binocular 6/5 (+1)

Lenses go in first thing in the morning and get taken out when I go to bed so wear is from 12 - 16 hours depending if it is a weekday or a weekend. To clarify earlier posts when I say vision drops off, it is by one line on the eye chart and now is only after 13 or 14 hours depending how much work I have done throughout the day on a PC. I used to get this anyway with my RGP's and that was after 8 - 10 hours depending on PC work and often I would take my lenses out for 30 minutes in my lunch break and would be worn no more than 6 days a week. The K3 lenses are being worn non stop all day while I am awake with no interuptions. The latest over refraction I will be getting the same VA as my RGP's so after much perserverance I now have a lens option that matches an RGP for vision, exceeds the RGP in comfort and lens wear duration.

Lynn has been most patient and I consider myself amongst the KC community to be very lucky. I hope the information learnt from my 'interesting eyes' will help many others here too.

I will upload the topography later once I have reduced the file size for easier viewing, but for my right eye it does show that despite my RGP's are the best possible fit (the compromise we all have), it does result in flattening the cornea. I think the left shows where the lens was sitting. To me this goes a little way to explain why I might have started to develop an intoelrance to my lenses.

When I left for London it was well gloomy and I forgot my black out glasses, but one thing I have noticed now I've been back at wok for a while is the light sensitivity is reducing along with the urge to rub my eyes so much. This might be down to the irrititation of the lenses making me slightly more sensitive to light so the bright sun of London was absolutly no problem, no fear of dust getting behind my lenses. I felt really liberated.

More than ever I am convinced that at first diagnoses when KC is likely to be mild this type of lens should be considered first and if the condition progresses to the point they no-longer work, then move towards the more traditional management systems.

I hope to persuade my hospital to see me at my next check up with the K3's in place (well the ones with the adjusted prescription) so they take on the patient care so if I am allowed, work with some of the new lens types and a few ideas the makers of the K3 have so we have more lens options available to manage our condition.

[pepepepe]

Fantastic ! its very good vision now and you may not notice the 6/5 being less than 6/6 as its so close (there are many who walk around with 6/5 not knowing its 6/5 and thinking all is well and they have 6/6, its not much in it) with both eyes open. I get 6/9 in my good eye uncorrected and I can't really tell its not 6/6 (but in front of an eye chart I can !)

You might get 6/6 with both eyes open once you get used to your new contacts, usually you see what your best eye sees, I hope you do just for the satisfaction of that, but you should be more than happy now and I hope you get to race at your hearts content !

[GarethB]

Here are the topographies, A at the top was done in September 2008 and B at the bottom was done on Tuesday 27 January.

__________

Left is to the left of the screen so right is on the right.

The bottom topographies show the cornea to be steeper than before but that is because there is no more load on the cornea flattening it.

The diffences between the topographies to is the time out of RGP's, the top one was after going about 4 days without and RGP and now we are nearly 6 weeks.

One startegy we discussed for anyone else changing from hard to soft (and this would be a case by case basis) would be to go without an RGP in one eye for a while so that an interim soft lens could be fitted to give for example 6/9 enough to survive with and then after a period of time when the cornea has settled to its 'natural' KC shape adjust the prescription accordingly. Then start work on the other eye.

Rather than go for the dramatic change I did, again it is case by case and for me we were confident we could get sufficient vision in one eye to help this process. Plus the more fittings of this type of lens and try new things the data builds so that we can help each other by shareing what does and does not work.

Nearly ready for motorsport, we are very close now, we still need to make sure that I get as a minimum 6/6 in each eye as the medical requires this as a minimum so binocular does not count.

I am pleased the results under controlled optometry conditions were not too different from my make shif measurements using the eye chart printed from this form and pacing out the distance!

[pepepepe]

I did know for motor sports you had to have 20/20 in both eyes (with out RGPS, that I knew), I thought it would be the same as with holding a driving license. May be with drag racing or F One its different again ?

Do they test your eyes before every race ? is the test done as with the driving license in good day light outside reading a number plate as so and so distance ?

I hope that tiny bit more to get to 20/20 isn't be too far away now. Whats your uncorrected vision ?

Anyway happy urban road motoring for now !

[GarethB]

6/6 is defo achievable the fitting before Christmas showed it was possible and we knew we would have to do another tweek as the cornea settled out of RGP's.

Only have the vision tested at the medical, the only time I have had it tested at an event was after being involed in a racing incident and had received a bit of a knock to the head.

Don't do urban motoring, too many idiots who need their eyes testing

Much prefer the more rural roads, better views.