Soft Lenses / Keratoconus

[longhoc]

Hi Ali

You've -- maybe inadvertantly just in passing -- made a comment that for me is the nub of this important matter. When you say “... we just do not have the luxury in the HES of going through the whole array of lenses from disposables to sclerals due to time and cost constraints...” I know you’re speaking the truth, certainly under the NHS. Any sort of labour costs money – and highly skilled , experienced, optometrist labour which is by necessity not easy to come by costs even more. When we are told that the NHS must make the same money go further, if 70% of the NHS’ costs are people, then it’s almost inevitable that the pressure is on to give only a limited time to each patient.

For the patient, though, the cost is irrelevant. We want the best treatment solution possible. Where there are compromises, we want the time, products and resources made available to us so we can determine the most suitable compromise for us. To be denied information on some options – or else, given a set of artificially limited, constrained choices – cannot be in the best interests of the person with Keratoconus.

Where the eye clinic – acting out of necessity due to budget limits – simply does not have the funding to spend on keeping a multi-skilled dispensing team in place, let alone at the cutting edge of current treatment developments then the first casualty must be patient choice. If clinicians end up tacitly acquiescing to that and rationalising it away by thinking that simplifying patient options to successive “We can do either A or B” alternatives is alright, then I think we’re all doing our individual roles in facilitating treatment a disservice.

Let me illustrate by describing my own Keratoconus treatment approach. It has boiled down to a set of very narrow “you can have this- or that-“ treatment choices. Basically, it’s been “you can have glasses or RGPs” then “you can have RGPs or surgery”. At no point have soft ICs of any flavour, sclerals, Intacts, thermokeratoplasty or T-CAT ever been on the agenda. CXL wasn’t mentioned until RGP intolerance and poor in-eye stability became a significant issue – not for me, mind, but for the optometrist ! I do think back on – certainly the last four or five years or so of the Keratoconus management I have received - and wonder if, had I been given more information and been made aware of more alternatives, whether my quality of life would not have been a bit better. The fact that I can legitimately pose that question says to me that something, somewhere, is a bit broken.

That is not meant to be any sort of rebuke on the optometrists. I have never found a more caring, diligent and supportive set of health care professionals than those at the NHS eye clinic I attend. I can though now tell that they are operating within a flawed system.

Which brings me finally (sorry Ali, I’ve really tried you patience here I’m sure !) to my point. Which is this: saying to Lynn – to paraphrase – “just keep disseminating information and plugging away to raise levels of knowledge and all will be fine” is not, in the opinion of this layman, going to turn the trick. This is because the systemic weaknesses (the cost management imperatives) simply do not allow this knowledge to be applied in clinic. Strategic problems require strategic solutions. To me, this also requires that NHS Keratoconus patients must go armed with all the latest thinking about their condition when dealing with their practitioners and demand any and all options be laid before them. And in turn, the practitioners must assist with this patient centric approach by both helping to stimulate demand by proactively explaining every treatment option now known and insisting on the availability of whatever the patient decides is best for them.

Radical stuff, perhaps. It would be helpful I think if every optometrist dealing with Keratoconus asked themselves whether, in the face of that sort of “patient power” they would truly be willing to respect the choice of the patient – even where they didn’t necessarily agree with it ? And would they be willing to go the necessary further step – arguing and challenging the budget holders in the Trusts (or whatever is replacing them) for the funding ?

I fear not. Which is why I see the future management of my condition being best served by finding the practitioners I think offer the best solutions myself – and paying up accordingly. While there is NHS rationing – however it manifests itself – it is the only way to ensure my best interests are met.

Chris


(PS -- to Andrew MacLean, hello, you're the moderator and you can pull threads and stop posts etc. if you want to but please don't, if that's okay ! I know this thread is a real mish-mash and might well be confusing to newcomers, but I think it's going to some very interesting places...)

[MartinC]

I was told, nearly 2 years ago now, by an NHS Consultant, that my vision could not be corrected with CL's (of any variety though at that time was wearing RGP's and only ever worn RGP's) to a level to be able to drive; a graft was the only solution which would take the best park of 5 years to do both eyes (18 month initial wait, 12 months to recover and finalise fit and then start on the other eye). Bearing in mind I am a 30-something, self-employed person with a young family, I had just been told I could no longer work for probably at least 2 years. How much was this going to cost the tax payer in lost tax receipts, benefit payments, etc etc?

Instead of just taking this advice I (very fortunately)c ame upon Lynn and with a few weeks was successfully wearing Kerasoft lenses and achiving excellent vision and comfort. This is still the case today, almost two years later.

So.......how much would the two grafts cost? The aftercare? The loss of tax receipts? etc, etc etc.

How much would it have cost the NHS to have a good Optomertrist spend a few hours with me to see if other types of lenses would be a solution? THIS DID NOT AND WOULD NOT HAVE HAPPENED!

I have not seen as well as I do today in many years and I am delighted with my Kerasoft lenses. I honestly do not understand why all KC sufferers have not, at the very least, had a go with Kerasoft (or a similar soft KC lens) to see if they could work. The comfort is just so much better. (As an aside, and this is by no means meant in any degoratory fashion, but can I ask someone like Andrew why they have not seen if soft lenses could be an option for them? I suspect you may say that you are perfectly happy with the solution you are currently using? If so, can you honestly rely on your lenses 100%, wear your lenses each and every day for 18 hours, with perfect comfort and good vision? )

I too thought I was manging quite well, though my vision levels were dropping, especially on my right eye. When I think back, I had stopped playing Tennis as if we got a court at 8.30 pm my eyes would be too sore. If we were going out for a meal on Saturday night i wouldn't wear my lenses until mid afternoon. I wouldn't agree to any appointments after about 6.30 pm. etc, etc, etc. This just seemed normal. It no longer is.

I also understand that often soft lenses do not give just as good vision as a hard lens may. Is the patient asked if they would be prepared to sacrifice maybe a line on the eye chart for better comfort and reliability?

[Ali Akay]

Hi Chris

Unfortunately we work in an imperfect system trying to do the best we can. The big unknown now is how things will change when the PCT s are scrapped and replaced with GP consortiums. Would things get better? May be, may be not. I guess it'll depend on how generous the budgets allocated to GP s would be and how high KC would be in their list of priorities with all other healthcare needs. In an ideal world every contact lens practitioner working in NHs would be experienced in fitting all types of lenses, will have enough time to discuss all the options with every patient and be free to try various lens types without any time or financial constraints. I know the term "luxury" might be misinterpreted by some people, but it is a fact that we simply do not have this luxury in busy hospital clinics with long waiting lists. One problem I find with Kerasoft/KIC lenses is that you could do a fitting, everything looks fine, you order the lenses based on the measurements with the trial lenses which gave good vision, then the patient returns 2 months later with great expectations, you insert the lenses and sometimes find that the vision is a lot worse that expected. Then you have to try to find out what went wrong, and the patient has to wait a further 2 months before you can see them again. This is not a criticism of the product as such, but an example of the kind of problems encountered more commonly with soft lenses than rigid due to the complexity of the problem. Hence it is understandable that if the patient is tolerant of rigid lenses -and a lot of people are- then its a lot easier and quicker to provide the patient with a pair of lenses that they can see with. Where the system is failing perhaps is when patients are unable to tolerate rigid lenses other options are not always made readily available to them. I totally agree with Lynn that there's general disbelief amongst practitioners about soft lenses working well in KC and this probably is the single most important reason why they are not used more commonly. The only way this can be changed is by educating practitioners as Lynn is doing with her excellent workshops. The only comment I would make is about her 95% success rate for all stages of KC which, in my opinion, is unrealistic and it doesnt help the cause of increasing soft lens usage as a lot practitioners would simply find it very hard to match and could end up losing faith in the product. It may be that she can achieve such a high success rate because she is able to spend a lot of time with patients fine-tuning the fit and prescription over a number of appointments which could take a very long time to achieve in a hospital clinic.

[Fordy]

Lynn/Ali,

What a facinating debate, thank you.

To summerise ,from a patients point of view I would say all we want is to be given the best possible chance of leading a normal life whether that be by using RGP or soft lenses, but many people are being denied this by to many optoms having pre-consieved ideas on what we should or should not be wearing.

Surely an open mind and on going education on a new genaration of products is the least we can expect.

Fordy

[matt28]

very interesting indeed....i to agree with fordy at the end of the day its all about quality of life that can be obtained , be it a rgp , soft or other type of lens...all us KC'ers want is to live a normal life as possible and to have the options available to do so..

i myself have recently made the transition from rgp's to kerasofts , and can only say i wish i had of known about
them earlier ,but having been told in my personal experience by my nhs pracitce over the years that the "soft lens route" simply wasnt an option i never thought of doing any research ..

[Lynn White]

Hi Everyone

This is tricky because I now have to be product specific to answers Ali's points and this does go against the rules of the forum.However, I think the issue is important enough to warrant discussion, so I hope the moderators will be lenient!

Ali said:

One problem I find with Kerasoft/KIC lenses is that you could do a fitting, everything looks fine, you order the lenses based on the measurements with the trial lenses which gave good vision, then the patient returns 2 months later with great expectations, you insert the lenses and sometimes find that the vision is a lot worse that expected. Then you have to try to find out what went wrong, and the patient has to wait a further 2 months before you can see them again. This is not a criticism of the product as such, but an example of the kind of problems encountered more commonly with soft lenses than rigid due to the complexity of the problem.

Now, first let me address the issue of KeraSoft lenses not working when ordered.

The main reason lenses do not work as well as the fitting trials is by far the fact that the original lens fit was not correct. This is a training issue that has been recognised and addressed by introducing new Fitting Guides (anyone who has had a Fitting Set will have been sent this through the post) and by the workshops. The reasons for fitting errors is that many assume this lens fits like a normal soft toric lens.Although fitting techniques are similar, there are significant differences, the main one being that rotation of the lens is a sign the lens does not fit correctly. In normal soft toric fittings, this is something that is merely compensated for in the final order. With KeraSoft, it usually means the lens is too tight or too flat and the new Fitting Guide clearly explains how to recognise and correct a less than optimal fit.

Other reasons for lenses not working can be if the patient has left RGP lenses out either before fitting or before collection in anticipation of getting their soft lenses. Demoulding of the cornea affects vision crucially, as changes to the corneal shape affect the overall refraction. I have to admit, this can also be a factor if a patient is waiting 2-3 months to pick up a lens, as RGP wear can often mean the cornea changes shape over time depending on wear times. This is also partly due to the fact KC corneas are more malleable than normal ones. Thus a a long wait between fitting and collection can mean there is more of a likeihood that there will be some change to the corneal shape which will affect vision.

So, with respect, I would say my success rate is more down to the fact I fit the lens correctly ( and I have contributed to the new Fitting methodology, which is actually very good at explaining how to recognise tight and flat fits) and I also fit in private practice, so that patients are not waiting months for lenses. Having said that, many hospitals are fitting KeraSoft very successfully and efficiently with very few problems with lens performance on collection, so on balance, I feel this is more a fitting issue?

I did actually do a previous post which also went into NHS issues but when I submitted, my sign in had timed out! So I will have to return to that later.

John, can you check to see if we can stay signed in longer? This has happened several times to me now and sometimes I simply haven't got time to re-post?

Lynn

[Lynn White]

Hi Everyone

Just re-read my post and realised it didn't read at all as I intended! Comes of rushing to re-post after losing my first one into the ether.

First: I am not implying that anyone is fitting lenses incorrectly, just that I have a good success rate because I do understand the lens design and its fitting very well, as that is my specialty. I also do have the advantage that I am not constricted by NHS appointment times, waiting lists and so on.

Second: I think Ali's use of the word luxury is actually apt in respect to the NHS. The service we get through the NHS is by necessity cost limited for almost any condition and this is going to become more obvious during the cut backs bite. As Ali says. now the system is changing, it will be interesting to see what happens.

Although, as Chris says, patients want the best possible service with all the possible options explained to them, this is not actually possible within the NHS and has not been for years for any condition. This is simply because the NHS was designed back in the 1950's to provide basic health care for all. It was not even imagined at that time we could have heart transplants or other high tech surgeries. Despite this, the NHS has valiantly tried to keep up and supply ever better and better treatment and by and large it does - but at a cost in terms of waiting times and time spent with each patient and over the last few years we have seen it struggle to balance the ethics of whether to limit or deny supply of certain treatments for various conditions. Do we spend a lot of money on a few patients or allocate the funds more widely?

I do spend more time with patients than I could in an NHS clinic and you do also have to remember that optoms in an NHS clinic are there to fit contact lenses - NOT to discuss treatment plans. That is not their function. Whose is it? Well technically the ophthalmologist but then they are tied by what that particular hospital can offer in the way of surgeries and these decisions are made higher up the ladder. It is certainly not easy.

This is why I say that what the NHS can and can't do should not shape best practice decisions about any condition. The two are separate. This is not now a discussion about lens types, it is wider than that. Logically, the various professions should decide on best practice for any condition taking into account what is best for the patient. As a society, we then decide what is affordable, practically, via NHS provision. If there is a shortfall, we should then decide how that is managed. However, because we are messy human beings, life is never as simple as that.

However, I will just go back to one other thread in this discussion. The NHS does measure quality of life in real terms (the units are called QOLs). This is a real measure of how anyone's life is affected by their condition and decisions on care provision are based on this economic value. If patients accept their quality of life as inevitable and do not report issues fully, then change cannot happen because no-one knows change is needed.

I also have the luxury of being able to chat to my patients directly or by email out of practice hours and thereby start to get a really good idea of how their life is affected by KC. Again, NHS clinics do not work that way BUT these clinics are free to the end user (I know they are paid for by taxes!).

What we are down to in real terms is that if any new treatment/contact lens appeared tomorrow that showed excellent promise in KC management, it simply could not just get accepted nationally, just like that, in a system that is free at the point of delivery. Some of the reasons have been explored in this thread.

It would be interesting to hear more from you, the patients, how you feel about the overall picture and what practical changes you feel could be made to overall care for KC. (and by practical, I mean you have to realise there is not an unlimited pot of money to go round! )

Lynn


(PS John, again my sign in timed out... luckily I copied it all before pressing submit this time!)

[Lia Williams]

Lynn said:

'It would be interesting to hear more from you, the patients, how you feel about the overall picture and what practical changes you feel could be made to overall care for KC. (and by practical, I mean you have to realise there is not an unlimited pot of money to go round! '

I've been thinking how to answer this question, especially as you refer to 'practical changes'. Some thoughts I've had are:

I think it would be helpful if High Street optometrists knew a bit more about KC. The hospital I go to only covers the front of the eye so I’ve needed a separate eye test to check the rest of my eye. Some of the optometrists I’ve seen in the last few years didn’t really seem to know that much about KC (to be fair I didn’t warn them when I booked the appointment). One suggested that anyone could fit KC if they had the access to fitting sets. This I find difficult to believe knowing how difficult my current lens fitting has been at a clinic with highly experienced optometrists with a vast range of lenses at their disposal. Another seemed to be irritated with my responses to the ‘better or worse’ questions when all I could say was ‘different’ to the four blurred squarish shapes on the projected on the wall. However I did get a pair of glasses that allow me to see something when I’m not wearing my lenses.

Similarly it might be useful if hospital optometrists encourage their patients to get a back-up pair of glasses. I appreciate that not everyone could get some vision with glasses; indeed for over 20 years I really didn’t think I would be able to get any useful vision from them. So I was pleasantly surprised to get some vision. OK, I can’t drive or read easily with them so I’m reliant on my contact lenses most of the day. But they are useful first thing in the morning or last thing at night and would have been extremely useful when my children were babies and I had to see to them during the night.

It would be nice to have a guide of what to do when a lens doesn’t work as expected (vision, comfort, ease of removal etc). Although one can request an earlier appointment it is still likely to involve a couple of months wait. Meanwhile the choice is either to revert to an older lens (which you know that the optometrist is trying to get you out of) or not see. I expect most of us who have been wearing lenses for years manage the situation by switching between old and new lenses to get through the day. But for someone new to KC a lens it must be difficult to know whether or not the discomfort is ‘normal’ or an indication that something is wrong.

I think that overall care could be improved by the development of an inexpensive contact lens that is suitable for the vast majority of corneas; that is easy to fit; easy to wear and is unlikely to increase scarring. If the lens were easy to fit, and didn’t increase scarring, it could be fitted by High Street optometrists; reduce the time taken for appointments, reduce the number of appointments for the individual and reduce the number of cases requiring grafts. Thus reducing costs all round.

From a personal point of view I would like to think that new patients, who are beyond the range of standard soft lenses, are offered lenses such as speciality soft lenses, hybrid lenses or corneo-scleral lenses which, as I understand it, are unlikely to increase scarring.

Lia

[Lynn White]

Interesting points Lia,

Often, when I do a general lecture on KC arranged by Local Optometry Committees, attendance is reduced by half compared to usual lectures. Optoms think it won't be relevant or interesting. However, when I lecture at events where optoms have to attend each lecture, they are fascinated. I absolutely agree that High Street optoms need to be informed, as they are the most easily accessed by anyone, and that its essential to try and sort glasses. Its just getting to that group and informing them that is the issue. With so much to learn at university, keratoconus has quite a low profile. Even ophthalmology for medics is not a huge part of the course, as it is more of a specialisation.

As far as "inexpensive" lenses go, I am afraid this is not likely at the moment for reasonably advanced conditions, as so much work has to go into design and development of new lens types. Its very much a supply and demand issue, as its a specialist market. If you take the UK alone and an incidence rate of 1 in 2000, then there are "only" 30,000 keratoconics, some of whom may not need contact lenses at all. That is a small number of potential customers. This is why most specialist manufacturers supply around the world, in order to increase their market.

However, if we got better at detecting very early cases and the cross linking type treatments improved to make it much easier and less expensive to utilise at the point of detection, then more normal contact lenses might be usable, or indeed spectacles.

None of this is easy!

Lynn

[GarethB]

This might be where shared care comes into the discussion. At the moment the changes to the NHS are only proposed and being discussed. My understanding is that an Act of Parliment will be passed so that GP's control ther budget, so this all has to go to the upper house and receive Roayl Ascent so might be anotehr twelve months or so before we truly know the final form the changes will be.

The treatment / management of glaucoma went through a major change a while back with a lot of involvement from the glaucoma charities and optometry bodies which has resulted in shared care and from what I can gather better treatment and reduced waiting times. The hospitals now only see the more severe / complex cases, so the management of corneal conditions and other eye conditions for that matter may go down the same route.

My vision is stable, lenses performing well so why should I go to the hospital and take up valuble specialist time when a high street optomotrists can look at my eyes and tell me if my corena is healthy or not. My highstreet optometrist is very proficient in fitting soft lenses because they do a lot of that whereas the hospital is less so because the deal mainly with RGP's. I know my highstreet optomotrists are less confident about RGP lenses because they have told me so.

Regarding Lynns point of early detection, whenever my daughter goes for her routine eye test, we insist she has a topography to to help detect KC as soon as possible with a view to having crosslinking if KC is descovered. I have my concerns about the treatment but if there are problesm 10 or 20 years down the line, I am confident technology regarding surgery and lenses would have moved on to deal with anything that arises that are less invasive than the transplants that I have received along with the years of contact lens use.