Kerasoft 3 Lenses & NHS

[Phantom]

Hi Guys,

I wanted some advice as I think I am just being fobbed off by my local NHS eye department!
And to be honest its really starting to infuriate me...

I was diagnosed with KC when I was 21 and was told it was worse in my left eye than my right, the difference between the two is so vast I was told that glasses isnt the best option as they can not give me a prescription with lenses so different between eyes (my left eye I can see 3 lines down where as my right i can see the one b4 20/20 vision) - since 21 the condition has not got any worse in either eye so thats a good thing...

... Anyhow they mentioned that lenses maybe a better option for me as it will give me good vision in both eyes, taking the strain off the right which is trying to compensate for the left which can sometimes give me strain headaches - so before I went for a 'Contact lens Trial' I done some research and decided that Kerasoft 3 lenses would be the best option for me as I could get longer wear out of them (especially as i work in an office) and they would most likely mean I could tollerate them easier!

To be joy I was told that the hospital I go to had trial kerasoft lenses and to mention these when I go to my next appointment, so on that advice I did and was told by the optician that the 'Boss' has thrown these trial lenses in the bin and will not give them as an option anymore because the success rate for these types of lenses in patients is below 40% and it was a waste of time? Even if they could work for me.

So my questions are:

1. Is it true that Kerasoft lenses are a waste of time and the success rate of them in patients is so low most NHS hospitals are not offering them to patients anymore and simply putting the trial lenses in the bin?

2. Do you think I have just been told a load of rubbish to get me on Rigid Lenses - maybe because they are cheaper - or because getting the right fit on a Kerasoft lens is too much hassle (which btw i have tried the hard lenses and I just cant seem to keep them in long enough to get any benefit as my eyes end up really dry and itchy so end up taking them out)

3. Why is it your told if you cant get away with hard lenses then your basically stuffed, as that is currently the only option?


I just cant personally understand how a company would bother making these lenses if the success rate was so low, I would love to speak with the company who makes them to see if indeed the hospital I am with have in fact still been ordering lenses of have 'chucked them in the bin'

Sorry if I am ranting, as you can prob tell I am a little annoyed at the whole situation grrrr x

[Anne Klepacz]

Hi Phantom and welcome to the forum
I've taken out the name of the hospital you attend from your post. It's fine to have a rant on this forum, but we do ask people not to name clinics (or people) if they want to be critical, as it could cause both the poster and the KC Group problems. I hope you'll understand.
There are several people who post here who are wearing Kerasofts successfully (though there are also others for whom they proved not to be the best answer). So I'll leave them to tell you of their experiences.
Anne

[Lynn White]

Phantom...

I am a consultant to the company who make these lenses and have replied to you by PM.

Lynn

[GarethB]

1. Is it true that Kerasoft lenses are a waste of time and the success rate of them in patients is so low most NHS hospitals are not offering them to patients anymore and simply putting the trial lenses in the bin?

I wear the Kerasoft IC lenses succesfully and have done for nearly 18 months and they out perform my RGP lenses and I know many where they are a great success. This is no different to other lens types, I know many who get on fine with RGP lenses, Sclerals and the SoClear lenses just as I know others who would say those lenses are a waste of time. Fitting a lens is as much a science as it is an art because we are all different, my hospital was sceptical about the Kerasoft lenses, so I got involved with a trial and the hospital have changed their mind since seeing the success I have had. With KC it is very much a case of trying lenses to see which suits you the best.

2. Do you think I have just been told a load of rubbish to get me on Rigid Lenses - maybe because they are cheaper - or because getting the right fit on a Kerasoft lens is too much hassle (which btw i have tried the hard lenses and I just cant seem to keep them in long enough to get any benefit as my eyes end up really dry and itchy so end up taking them out)

It could be that the fitter found the lenses hard to get on with, I've encountered this before but with support from the manufacturers I know fitters that have gone back to the soft lenses with great success. Don't think soft lenses are cheaper but for me they are cheaper to maintain and the hospital spends less time and money with me. With RGP lenses I used to be in every 1 - 3 months for at least 90 minutes and every six months or so be in eye casualty and have time off wiork becuase of lens tolerance issues. As the hospital see's me less, they are spending less on me and so free's up time to see others. Some hospitals appear to be restrained by accountants who won't allow the hospital to spend more than a certain amount on lenses, I know many who are unable to get scleral lenses due to the cost. Unfortunatly quality of life is something you can not put a value on.

3. Why is it your told if you cant get away with hard lenses then your basically stuffed, as that is currently the only option?

This last comment sounds like it has come from someone stuck in their ways who thinks it is RGP's or a corneal transplant. We have so many different lens types available to us that it should be possible to get a good comfortable lens fit. If not this may be possible after Intacs or Cross Linking or these two could be performed together. So sounds like your fiter could do with some education in to the latest KC management solutions available to us.

[Andrew MacLean]

Phanton

Welcome to the forum

There are, of course, also other hard lenses or combined lenses that you could try. Hybrid lenses have a soft 'skirt' and a hard centre; piggy back lenses are hard lenses that you wear over soft lenses; scleral or haptic lenses are rather large lenses that rest on the white of your eye and vault over the cornea (there are also mini sclerals, SoClear and the various soft lens options.)

In your place I'd ask for a referral to another centre where they are move open to new developments in the treatment of keratoconus.

Andrew

[Phantom]

Guys,

Thanks for your informative posts!

Hopefully I will be able to get something sorted - I just cant see why a patient isnt given ALL the options available to them so they can work with their consultant to make a decision which will be best for them, surely that is an important factor in treating the condition?

I will let you all know how I get on and whether I can finally feel happier and not need to worry so much.


Phantom

[BurnTheAction]

Can i just ask why the names of hospitals and clincs are always removed from this site when posts suggesting they are not up to scratch are made, in what way will the group or the poster get in trouble?

With misinformation and sometimes even ignorance regarding KC being an uncomfortably common occurence in the NHS, surely the purpose of this site is to ensure those who suffer from KC receive the best treatment possible? Noting those clinics and hospitals to avoid is surely a must have service?

I'm in my early twenties as well, and from my experience i agree with the OP in that many local NHS hospitals who treat kerataconus are so close minded regarding the options available, it's either RGPs or nothing. With RGPs often causing scarring that can have seriously reduce your ability to wear any type of lens in the future (as i am now finding) why should we not question these opinions and point them out to others? If certain treatments are carried out or lenses fitted at an early stage future complications and misery can be avoided.

Fitting RGPs to those with keratoconus and then dealing with the scarring or complications that can often occur in a few years is not the only way, but it does seem to be the NHS way.

[Andrew MacLean]

Living in Scotland, I have always found this puzzling, too. The long and the short of it seems to be that there was once a comment on the forum that named a hospital (or maybe it was a clinic). It happened that someone from that hospital (or clinic) visited the forum and realizing that there was a derogatory comment that called into question his or her professional competence threatened legal action for defamation.

In Scotland this sort of action is very rare and seldom produces anything but a token settlement. In England things seem to be different. As the site is part of the work of a registered charity, and the trustees of the charity are jointly and severally responsible for any liabilities the charity attracts, the present policy was instituted.

I am not a trustee, but I do not think it would be responsible for me to put at jeopardy the personal resources of those who are.

That, at least, is my understanding of the background. Maybe one of the trustees will correct me if I am wrong.

Andrew

[Phantom]

Andrew,

I most certainly understand why the name of the hospital was removed, however like most forums on the internet chatters are able to express their satisfaction or disatisfaction about a company (or in this case NHS hospital) and by simply having a clause in the terms and conditions of the website to say any and all discussions on the website or forums do not 'Reflect those of the website owner/organization' this dissolves all responsibility - is that not right?

Otherwise you would find all other sites would be sued for the conversations and opinions expressed by their visitors.

But i do understand the caution

[Andrew MacLean]

I am sure that the trustees will see this exchange. They set the policy for the board and I do not anticipate any early revision of the policy.

Still, thank you for raising an interesting question.