New Sight Registration possibility for KC: Input needed

[Lynn White]

I have moved this post from its previous position on another thread and edited it slightly. This is a request for feedback and information: if you feel you have any input at all into this issue, I would really appreciate your contributions.

On April 29th 2010, the major Optical Bodies officially joined in forming an Optical Confederation (see press release) which aims to speak with a united voice for patients, professionals and the optical sector.Within this Confederation, I am involved with Low Vision issues and am now officially looking at this situation of sight registration for KC and IC. I am going to prepare a report on this issue and my first priority is listening to YOUR input.

Here are some suggestions and ideas that have been mooted:

A new registration category called, perhaps, "Variable Sight Registration" which would apply to those who rely on contact lenses in order to function visually. This could be entirely voluntary and would be more for recognition purposes. i.e. rather than having to explain to educators, employers, family friends etc about your visual issues, the registration would make this official. It could also automatically open doors to access to visual aids and so on.

Another registration category called "Temporary Sight Impairment" which could relate to period of time when one is recovering from grafts or other KC treatments.

Louise's excellent idea of a "badge" to show when you are not wearing your lenses is also something that I have been looking at (she posted several times on here about it).

Background:

Registration has many functions, not least the fact that it highlights the quality of life issues for many patient groups and brings recognition that certain eye conditions cause loss of visual function. Historically, keratoconus (KC) and other related irregular cornea (IC) conditions have always been "left out" of the registration process because of the small number of patients involved.

The official stand has been that most KC and IC can be managed with contact lenses, the majority have the condition worse in one eye than the other, so nearly always have one reliable eye and the small number of patients that suffer sight loss in both eyes simultaneously can be managed on a case by case basis without the need for a "special" category. However, treatment and management of people with KC and IC is changing fast at the moment and I feel the time has come to change the registration criteria.

Lets first look at definitions. Only 5 % of people registered "blind" are actually TOTALLY blind i.e. absolutely no perception of light. Accordingly, this definition was changed to "severely sight impaired" a while back. Similarly, "partially sighted" is now "sight impaired". This is not some PC rewording by bureaucrats, it is a real attempt to more correctly describe what sight loss people suffer.

Here is the official criteria for blindess:

Generally, to be registered as severely sight impaired (blind), your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:

visual acuity of less than 3/60 with a full visual field
visual acuity between 3/60 and 6/60 with a severe reduction of field of vision, such as tunnel vision
visual acuity of 6/60 or above but with a very reduced field of vision, especially if a lot of sight is missing in the lower part of the field.

As you can see, this does NOT require you to have no vision at all. It also says you have to be wearing the contact lenses "you may need". It does NOT take into account the fact you may only be able to wear these lenses for a limited time in any given day, which is where this completely falls down.

Official "partially sighted" registration

To be registered as sight impaired (partially sighted) your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:
visual acuity of 3/60 to 6/60 with a full field of vision
visual acuity of up to 6/24 with a moderate reduction of field of vision or with a central part of vision that is cloudy or blurry
visual acuity of up to 6/18 if a large part of your field of vision, for example a whole half of your vision, is missing or a lot of your peripheral vision is missing.

As you can see, a lot of this is based on eye conditions such as glaucoma which cause sections of your field of view to disappear completely. None of it addresses contact lens wear for KC nor does it address the temporary changes in vision that people undergoing INTACs/CXL/ grafts suffer.

What I would like to see is a lively debate all around this subject so as to get YOUR input as to what you think should be done. This will also open up the subject that Louise and Andrew have highlighted here: the need for PROPER, considered, structured advice on the condition based on modern technologies. In my many discussions with professionals about this whole subject, what strikes me is that many assumptions are made about what "patients" want or think. In the end, none of us professionals really "know" - but YOU do.

This is an incredible opportunity to improve quality of life for everyone with KC and IC. To make change happen, it has to be shown there is a need for change and therefore your views are essential to that process. Please, let me know your thoughts either by posts to this thread or pm's or emails. I would also really appreciate professionals' views as well, as whatever is discussed has to relate to the practicalities of how it will be administered.

Lynn White

PS

If those who have already posted on the other thread could copy their posts to this location, then this would keep this thread intact and separate to the other one.

[Helen G]

This doesn't take into account the difference in vision that I along with many other have at night, or on bright days. Even when I had good vision with KC and lenses I could not see at all well at night due to the distortions from lights. At present with more severe KC (and a recent intact) I cant see to step down a kerb or cross a road safely on a sunny day.... if its cloudy I can! My vision tests are usually better if they turn off the standard back light, but if was to be tested for registration I do wonder if they would use the light on or off.
Being able to tolerate double vision enough to see a chart for a few seconds is very different to trying to watch tv when there is 2 of every image.
I know none of this fits into the usual vision tests, but what I can do and see in a hospital room is not a good reflection of what and how i see in life.

[Lynn White]

Thank you for this Helen.

This issue of photophobia was also realised by Rosemary and is very valid. The separate issue of ghosting, multiple images, poor vision at night etc does also need to be taken into consideration.

The new registration could include, as part of its definition, distortion effects when wearing lenses and the night vision effects. This is all up for discussion!

Any more issues anyone?

Lynn

[Lia Williams]

Lynn,

Background

I wear contact lenses about 15 hours a day and get very good vision with them. Unaided I can’t read the top line of the chart but with glasses I theoretically get 6/9 vision so even my corrected vision with glasses does not come into the above categories. However I have/have had issues with multiple images, temporary eyesight problems and photophobia.

Multiple images and distorted vision

The 6/9 vision is not simply the world out of focus – like a badly adjusted projector - but it is several distorted out-of-focus images . If I wore my glasses more frequently the brain might learn to straighten up the images but it cannot reduce all those multiple images to a single one. It is this distorted view of the world that means I wear my contact lenses as much as possible. As I sometimes need reading glasses over my lenses I’ll wear my glasses late at night to read if my eyes have had enough.

I dislike wearing my glasses because I don’t feel I’m me and I get irritable as I can’t see things as well at a distance as I can with contact lenses. Also people seem to think that if you are wearing glasses to can see with them! I used to have a picture of a typical KC image and explain that that was roughly what I saw with glasses as they only corrected the myopia and some, but not all, of the astigmatism.

Temporary eyesight problems

When I was first told by an optician twenty years ago that I had a problem with my eyesight and needed to go without lenses for three weeks (which was nearer five by the time I got replacements) it would have been nice ‘to have permission’ to take time off work. No one seemed to understand that for this period glasses were totally useless as my eyes demoulded from PMMA lenses (in fact it was another eight years before I discovered that I could get some vision with glasses). So in this instance it would be useful to have some formal recognition of temporary problem. Rosemary suggested this could be covered by sick notes – can/could optometrists write sick/fit notes?

The other temporary problem is when I’ve had to leave a lens out of a few days. I can cope with most things with just one lens; but I won’t drive with one lens because if that lens were to ping out everything beyond the end of my nose would be a complete blur. That said I can’t remember when a corneal lens lasted pinged out. The temptation is, of course, to wear both lenses for a half an hour or so to drive to drive from A to B, which of course is exactly what one shouldn’t do to allow an eye to recover from a scratched cornea.

Photophobia

Ever since I started wearing contact lenses I’ve lived in sun glasses in the summer. Over the years wearing PMMA corneal lenses the problem got worse, but improved dramatically with properly fitting lenses. I still wear sunglasses in bright light and I’m frequently told that I can’t possibly need my sunglasses (but I do!) as the sun’s not shining that brightly. If I forget to wear my sunglasses and the glare catches my eyes in a certain way I know I’m going to get a bad headache above my right eyes six hours later.

I hope these thoughts help,

Lia

[Lynn White]

Thanks Lia!

What we therefore require is a recognition that even people with up to possibly 6/5 acuity with spectacles may have issues of multiple images, ghosting etc caused by Higher Order Aberrations. PMD in particular often gives reasonable acuity on a Snellen chart but can result in multiple images.

Also, actually, many people cannot tolerate the full prescription in glasses due to the resultant distortion and often prefer to go without because its more comfortable, even though they cannot see as "well".

Many of these issues can be hard to define for the purpose of registration as its hard to "prove" using simple measuring techniques such as a Snellen chart but can be included in a category such as: "Vision up to 6/6 or more with spectacles on the Snellen chart but impaired by Higher Order Aberration effects." As this would be a voluntary registration, it is really indicating the person has a vision ISSUE which may in fact be psychological (such as not being able to insert lenses or to cope with "restored" vision following grafts etc).

I do appreciate this whole demoulding/refitting issue is a problem as well - which, frankly, is why refitting someone can be so difficult and why occasionally, people cause damage to their eyes with lenses. They may know something is wrong but know if they seek professional help, the lenses may be taken off them for a while which means incredible difficulties at work. Optoms cannot issue sick notes. In fact optoms cannot register patients with sight impairment either.

All this input is extremely valuable!

Lynn

[rosemary johnson]

Hi Lynn- thanks for starting this new thread.
If someone can and would be so good as to copy my post over to this thread from wherever it was, please would you? Thanks - I don't know if I can, or how to try.
As regards distortion : agree entirely!
ISTR also that high levels of correction for astigmatism effectively give only a reduced field of correvision that can be corrected with glasses - back to the "tunnel vision" rules?
I have problems with this - I have quite a high astigmatism correction required post-graft - the eye doesn't tolerate a hard lens any more than an hour or two at a time (every few days).. But thanks to the damage caused by the amaesthetic I got coerced into for the graft, there's no way I could keep my balance walking up the road in such a high correction , let alone ride a horse or drive a pony cart.
1;2cWhat's more, the time I really really need to have some distance vision out of that eye is when I'm riding/driving the carts, and I bit I most need is to be able to see out of the corner of my eye to see what's coming up behind and aout to overtake. Not what I'd get from glasses at all.
COuld any of this come under "field of vision" rules?
Also .... I hat ethe way these things are called "psychological". It makes it sound like it is us who have a "hang-up" and ought to be bundled off to a shrink of some sort! OK, I know it may be strictly correct in that it's the brain that can't process the images not the eye and optic nerve..... but the sound of it rings warning bells to me,.
As regards the "signing off" : I think a lot of the "health professionals" assume that we are all very well known to, and on tgood terms with, our GPs, and can get a GP to sign us off if we can't go to work.
But for the most part, we aren't ill!
Why should we know our GPs well? - and why should they know anything much about our eyes??
We see the optoms, opticians, eye consultants..... but how many of us never darken the GP's door from one year end to the other?
- before the multifarious problems caused by my graft, I used to see the asthma nurse annually for check-=ups and flu jabs, and and my GP hadn't a clue about who I was.
And besides, eyes are so specialist - how many GPs really know much about eyes anyway? - they send eye problems round to the specialists hastily!
More later probably...
Rosemary

[chris1972as]

Hi there to all, I also wear contact lenses for my vision but am not sure all the jargen when it comes to snellen charts and so on, I have been told my left eye is 6-12 my right 6-18 with contact lenses and I do know as the day ages my eyes tire making vision even poorer. I would be willing to be registered just for the comfort factor of my employers so they take my condition a little more serious...

[Lynn White]

Hi Rosemary,

Field of vision rules apply to complete loss of vision in non central areas of vision. Effective loss of peripheral vision due to prescription effects are different again and are not covered. This is why we need to review vision impairment. We know much more about the visual system now than we did at the time the sight registration was first defined and it thus needs updating.

The psychological issue I mentioned was in response to Louise's comments (on a previous thread) about people who are psychologically incapable to insert and remove lenses. This is nothing to do with adaptation issues relating to spectacle wear which is down to how the brain interprets the information sent to it by the eyes. So, no-one is calling these problems "psychological".

Chris, thank you for your post. In fact, your situation is exactly why this registration needs to be brought in.

Lynn

[Loopy-Lou]

Rosemary when I was a teenager I spent 2 years partially sighted because after multiple lens problems I became phobic about using lenses. I couldn't read and I couldn't talk about it, but if I'd been registered the bit of paper would have enabled me to start talking and seek help for many other things.

[Lynn White]

Thanks for that Lou!

Also, it is interesting to note that when corneal grafting for all sorts of eye conditions started to take off many years ago, many people were grafted who had been blind for long periods of time, 10 years or more. The sudden restoration of sight was often extremely difficult to come to terms with and often led to clinical depression as the people concerned had made adjustment to lack of sight. Such was the lack of understanding of the psychological issues at that time, guide dogs were removed almost immediately, before the people had had time to adjust to a sighted world.

One of the big issues about Keratoconus and irregular cornea is that most people do not understand how it affects the quality of life of those affected. Family and friends may unthinkingly say "I don't know why you keep struggling with contact lenses, why don't you just wear glasses?" Even vision care professionals may not understand the impact that relying on contact lenses to be able to lead a normal life has on mental well being. I have been involved in many contact lens workshops where the most important outcome has been the fact that optometrists actually listen to KC "patients" discussing their situation with each other.

Thus psychological issues do need to be understood and addressed for this particular condition. People who have other eye conditions have similar issues but for different reasons however, they are in the position that generally, the issues are permanent. KC and IC are unique in that vision can be improved by contact lenses so it is assumed that there is no problem. Wear the lenses and see.. end of story. Often this is not such a simple thing to do.

Lynn