New Sight Registration possibility for KC: Input needed

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cone_eyes
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Re: New Sight Registration possibility for KC: Input needed

Postby cone_eyes » Tue 08 Jun 2010 10:37 am

At last someone seeking to redefine the grey areas. Recognition and protection would help on those odd occasions when you feel ripped off, guilty or stupid etc.

Hi, just a few basic experiences and suggestions for the day to day problems with KC. For some the problems a consistantly inconsistant!!!

BAD DAYS - GOOD DAYS - On the bad days you can look and feel stupid and incompitant, then on the good days you can look like a fake and feel guilty because "yesterday you were half blind, but today you can see perfectly - how strange!"

ALLERGIES- seasonal / environmental - can cause sorness, resulting in reduced or no wearing time or an increase in mucas, resulting in blured vision

INSURANCE - Once KC or a graft is declared, any claim concerning vision can be excluded by the policy. When you need time off this can mean the difference bewteen financial sink or swim.

BUS PASS - If your having a bad day/week/month, and these can be frequent, the right to a bus pass could help some.

1. The legal "grey area" when a person has standard vision whilst wearing lenses BUT is at best partially sighted or at worst technically blind when unable to wear due to sorness/infection or loss of lens. This person appears to be treated wholly as normal at all times in the eyes of the law, even the DDA seems open to interpratation on this. This type of situation seems unbeleivable to most.

2. Health insurance cover & sick pay - serious critical illness, sickness cover.

This is not a problem if you have private cover taken out before diagnosis.

A student who is diagnosed between the ages of 16-21 may not start work until 21, is disadvantaged when obtaining cover due to the onset and diagnosis usually in their teens when they are unlikly to obtain or need this type of cover.

Also anyone changing job/employer who was diagnosed during their last employment term will be penalised as this is now viewed as a pre-existing condition by the new employer and will not be covered if using an employers sick pay scheme.

Statutary Sick Pay is only offered for 26 weeks @ £60ish.

3. Solutions and prescription charges - When you are reliant on the use of leness you are also reliant on the need for solutions, offer at least one full months of solution (wetting, saline, cleaning) for one charge.

I DO NOT like the idea of wearing a badge.

All for now.

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Re: New Sight Registration possibility for KC: Input needed

Postby Andrew MacLean » Tue 08 Jun 2010 11:15 am

cone_eyes

Welcome to the forum, and thank you for your post.

Andrew
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Lia Williams
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Re: New Sight Registration possibility for KC: Input needed

Postby Lia Williams » Tue 08 Jun 2010 11:43 am

Just thought I'd add an example of how my glasses prescription of 6/9+ vision on the Snellen chart is misleading.

The Saturday before last I was wearing my glasses to watch the Eurovision Song Contest results and I could easily read the name of the country giving their votes on the right hand side of the screen as there was only one line of text and the ghosting I got above and below the text was not a problem. However the list of countries and the scores on the left hand side of the screen was a complete mystery. Although the text was larger than on the right hand side of the screen the ghosting from each line of text overlapped the other lines effectively blurring the lot.

So perhaps there is a need for another method to quantify the level of vision achieved.

Lia

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Re: New Sight Registration possibility for KC: Input needed

Postby nicola jayne » Tue 08 Jun 2010 12:49 pm

Hiya
Lyn this is a very good thing that you are doing and hopefully the outcome will be good !. What I find annoying with the system is :
I have not been legal to drive for over 3 years, I use a cane , am contact lens intolerant, have ghosting and glare and night time issues etc. Have not had a stable eye prescription for the last 3 years, I had to get a new prescription every 6 or so weeks (costs a bomb) so now I just wear glasses with an incorrect prescription because I dont see the point in having to buy new ones for them to not help after 3-6 weeks.
Yet they wont register me partially sighted because they are waiting to see what the new surgeon can do, they having been and i have been waiting for a year but been in this position for 3 years. In the meantime I have to rely on family for lifts because they have not revoked my driving licence so I cant even get a bus pass or other ''perks''. Do you know what I mean ?
there should be some sort of something to help KC and IC sufferers even if it is reviewed every 6 months or something.
The most support I have had is from my optom at specsavers she is brilliant. She got me the low vision assesment and sorted out my cane etc

Anyhoo, said new surgeon is wanting to crack the graft open again next month and re stitch, which I have already had done once before and did not work.... but apparently he is a better surgeon and he wants to try this again.. sigh.. nothing ventured noting gained.

Good luck Lyn

Nicola.

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Re: New Sight Registration possibility for KC: Input needed

Postby John Sanders » Tue 08 Jun 2010 2:26 pm

Hi,

As Lynn know, KC is not the only condition where people find it hard or impossible to register as sight impaired/partially sighted. Despite being visually impaired, many of us with nystagmus are turned down for registration even though at the same time we cannot drive.

Nystagmus is a dynamic condition, so our vision varies during the day. Some of us can do quite well -- eg read four or five lines down a Snellen chart -- under ideal conditions. However, that is not a true reflection of our functional vision in the real world. So, we are right behind any initiative which seeks to change the outmoded registration process and make it more patient centred.

John

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Re: New Sight Registration possibility for KC: Input needed

Postby dazzabee » Wed 09 Jun 2010 11:09 pm

Really interesting thoughts here. Can I just pick up on a couple of points.

cone_eyes: You mention that you do not like the idea of wearing a badge. Can I ask your reasons why? It would also be interesting to read other peoples thoughts on this too.

nicola jayne mentioned the use of a white cane. Is this something other people would like to have access to?


Really interesting topic.
Jay

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Re: New Sight Registration possibility for KC: Input needed

Postby Lynn White » Fri 11 Jun 2010 8:16 pm

Cone eyes...
Recognition and protection would help on those odd occasions when you feel ripped off, guilty or stupid etc.


Actually this is more than for those "odd occasions". Nicola Jayne points out a very real issue, in that hospitals are very reluctant to put people on any sort of register and this is really the "fault" of the current system of registration as its very much "black and white". There also seems to be a feeling amongst some hospital departments that if a person is registered then they have been failed by the system. As good vision may be restored by the next operation or procedure, there is a real reluctance to register a person if they will be OK in a few months. However, those few months may seem like an eternity!

Your points: Bad days good days and allergies are exactly why variable sight registration is needed. It is an official recognition that explains WHY you were fine yesterday but are completely incapable of driving/working today.

Insurance ... well every little helps where they are concerned!

Bus Pass.. excellent idea and something I will take on board.

Again, may I thank you all for giving examples whereby Snellen charts simply do not help. This all helps to build the case. As you can see, other groups representing people with other conditions are also interested in changing registration and many of these are able to be covered by the same two registration proposals. This makes it much more likely that a change can be brought about and can assist in awareness raising.

Thank you again to all who are contributing to this thread.

Lynn
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pam39
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Re: New Sight Registration possibility for KC: Input needed

Postby pam39 » Sun 13 Jun 2010 11:58 am

Hi I have been following this thread wirh interest. I have KG and wear glasses 6/18 left eye corrected; finger count right eye. The KG in my right eye is advanced and causes me much irritation, eye weeps daily now and the cornea perforated last year. I have to wear solar shields over the top of my glasses even in moderate light as I an very photosensitive and though they do help they do not completely ease the discomfort. 8) 6/18 though not bad is not a true reflection of what I can actually see and read. I have to use a magnifying glass at work to make the small blur into a bigger blur that I may (or may not be) able to decipher. I also have difficulty seeing in the dark so do not like travelling about at night. I think people should have the option of registration and it may raise awareness of the difficulties we can all face in our everyday lives and how this can impact on us in general.

Pam

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Re: New Sight Registration possibility for KC: Input needed

Postby Lynn White » Sat 19 Jun 2010 10:10 pm

Hi All,

There have been a good many developments on this subject last week. Many patient groups concerned with a wide range of vision conditions are all interested in fighting for a form of Variable Sight Registration, as it is not only KC that gives people fluctuating vision. Government (the last one as well as this one) are of a mind to change sight registration, as the current system seems to fail so many people.

I know that many people become disillusioned about change. "It will never happen" is the usual response. However, if you are passionate about the way KC is dealt with in the UK right now and truly want to make a difference, now is the time to act. I seriously believe we now have an opportunity to make change happen.

Look at the poll here http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=5761 or respond to the same poll in the upcoming newsletter. Add your comments to this thread. Contact me if you want to help. Make your voice heard.

Lynn White
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Re: New Sight Registration possibility for KC: Input needed

Postby Lia Williams » Mon 21 Jun 2010 11:58 am

Lynn White wrote:
However, if you are passionate about the way KC is dealt with in the UK right now and truly want to make a difference, now is the time to act. I seriously believe we now have an opportunity to make change happen.



Yes I‘m passionate about the way KC is dealt with –

For me – of the items listed I want recognition – that is to say an acknowledgement that:

- Contact lenses can’t always be worn for the whole day – I feel like Cinderella leaving a ball when I have to leave a somewhere early to get home before my lenses time out. The one lens at a time technique doesn’t really work for me as the unaided vision in each eye is so poor (abt -10D required)

- How vision varies with each blink. For me, with the left lens on each blink I get excellent vision which reduces ever so slightly until the next blink (it’s actually not noticeable in real life but is apparent if I start analysing what I see). The right lens I can manoeuvre into a good position by causing the lens to move along the eyelid – but the majority of the time the sight is significantly less.

- How the official definition of acuity is based on the Snellern charts is misleading, either because the lens doesn’t sit in the optimum vision position for most of the time, or (in the case of glasses wear) multiple images cause the effective vision to be reduced

In many respects I’m lucky insofar as I have good vision with contact lenses for 15 hours a day, seven days a week and theoretically my glasses vision is ‘not that bad’ so at the moment I’d be highly unlikely to qualify for some of the items listed in the poll. However after 35 years of contact lens wear I feel intolerance issues could be a problem in the not to distant future so need to ensure that I keep this standard of vision.

My other issue, which is not so much about variable sight recognition, but more about how KC is dealt with, is that I don’t feel that high street optometrists really appreciate what we see or how tricky contact lens fitting can be.

I had an eye test last week and the high street optometrist recommended a pair of distance glasses for driving and a pair of varifocals for daily use. I can’t believe it! After being told for twenty years that glasses were no good for me, that I’m going to get a pair of glasses to drive in! Actually I’m expecting to be disappointed as I doubt if I’ll get the theoretical vision and as these glasses will be substantially stronger than my current back-up pairs they will take some getting use to – but driving in them?

And at an eye test a couple of years ago another high street optometrist told me that fitting contact lenses for KC was not that difficult; all that was needed was the fitting sets. This made me think that my eyes must be particularly bad as refits take ages in a hospital with a large KC clinic with very experienced contact lens specialists.

Lia


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