New Sight Registration possibility for KC: Input needed

[Lynn White]

Hehe... that comment did amuse me Lia..

All I can say is that anyone can FIT a KC lens given the fitting sets. Whether that gives the best vision/physiological health/wearing time for the patient is another thing entirely! This is why it all takes so long!

Education of optometrists in fitting specialist lenses of any sort is a hot topic at the moment. Since the advent of disposable soft lenses, the skills needed to fit contact lenses has reduced with the result that there are fewer and fewer people around who are a) skilled enough or b) interested enough to fit "difficult" cases. Its another area being addressed by the Optical Confederation. Meanwhile, you are quite correct in saying this is an issue.

For instance, scleral lenses are not fitted by every hospital department, let alone the High Street. To get to a really good centre that deals with this lens type you may have to travel many miles outside your PCT area. One area being discussed at the moment is the idea of a "patient budget", i.e. funding attached to YOU the patient so that you can spend it where you like.This has most relevance to those with more rare conditions and it spans across the medical spectrum and addresses the infamous "postcode lottery" situation. One problem is that many experts dealing in cutting edge treatments tend to operate outside the NHS, as it can take years for a treatment to be approved and become mainstream in the NHS. Cross linking and INTACs are a typical example of this. If the patient budget relied on a treatment being approved by a PCT/NHS, then many people wouldn't be better off.

What is important is that people with KC are informed of ALL choices available to them and given the option of travelling to other centres and/or buying the treatment from the private sector and perhaps mixing private and NHS treatment where appropriate. The other issue is access to Low Vision Aids for when lenses cannot be worn.

Lynn

[Lynn White]

Just bumping this up.

Please note this is still an important issue and that change cannot happen without YOUR input.

To update: The professionals bodies are willing to work to improve the registration situation as far as variable and temporary registration is concerned. What is now needed is real input from the "end user" which means YOU.

Please do complete the polls online and also those sent out in the KC Group Newsletter

Lynn

[Lia Williams]

Lynn,

I agree it is an important issue. For me the important issue is that glasses do not work as well as the prescription would imply.
I’ve just collected my two new pairs of glasses and I am disappointed.

The varifocal glasses were set up for distance/computer and reading, and no matter where I look through the glasses at the computer screen or a book the text has too much ghosting/blurring to read comfortably. Whereas, with my old 1997 glasses, I can read the computer screen or a book when it is about 10 – 12 inches from my eyes.

And as for the distance glasses for driving. I don’t think so! I’ve just been for a walk around the park and I was pleased that the verticals were still vertical. When I looked at car number plates some were easy to read – but some weren’t - I’ve not quite worked out why this is the case. It’s as if I look through a particular point of the glasses there is good vision – but the effective vision is less than this.

Yes the glasses do give me some vision, but not the vision I had been lead to believe they would. And I’m not comfortable wearing them. Due to their high power the glasses, with extra thin lenses, are still thick and my eyes appear really small. I will preserve to see if I can adapt to use the glasses but it looks like I have two pair of glasses that are destined to lie unused in a drawer!

It’s no wonder we push our contact lens wearing times to the limit and feel disabled without them.

Lia

[Lia Williams]

Lynn,

I was pleased to see in the KC newsletter that consideration is being given to the possibility of allowing hospital optometrists to register patients for the new vision registration categories. It would have really helped me when my KC was discovered and I had to go without lenses for a month while my corneas recovered from lenses which no longer fitted, but through which I could see well.

As for my new glasses I have another example of how the Snellen chart is misleading. My left eye apparently has 6/6 vision with glasses (-9.25 sph -2.00 cyl). Yes, I can read that line, but only if I look through the centre of the lens, the image blurs if I look even slightly off centre. If I look through lenses near to the frame the chromatic aberrations gives lovely blue or red edges to things!

Lia

[Loopy-Lou]

I feel utterly disabled [ans scared] without lenses and some days I can't get them in for other health issues [mental health] which the eye hospital are not even aware of, I don't tell them that because I worry I wouldn't be taken seriously.
Snellen is SO misleading, with a new lens for example - concentrating on a single letter in clinic it's 6/9, looking at whole words/sentences on the screen or the KC newsletter - I can't read it at all because there's too much 'fair ground mirror' distortion which you don't quite grasp just how it is when first trying it concentrating on a single letter or 4 letters on the chart in clinic.
Also, optometrists ask you to move your eyes up/down and left/right, it's only at home do you realise that other positions don't work so well, such as trying to shave underarms looking down and on the diagonal, the lens doesn't move with the eye right so it's uncomfortable and vision impaired.

[Loopy-Lou]

ps lenses and extremes of temperature and worst of all - wind, a killer with RGP's, or one going awol and eye movement causing the other to start playing up, so double trouble!
Registration would give recognition that lenses, before and after surgery are really the most critical aspect of KC management, sometimes the most distressing and frequently they determine work/education/ability to live. Grafts are meaningless without lenses, and lenses are hit and miss because shoving a lump of plastic in your eyes is hit and miss. I remember the useless council sensory impairment team who knew nothing of KC saying that if RGP's were painful because of debris getting under them then they should be fitted better! It was hard to not be sarcastic and say 'well if you think you find someone who can fit RGP's to never get debris under them your first name must be jesus'

[sherlock]

I was managing with KC in both eyes for the last 7 years till i suffered a detatched retina at work and lost my vision in my best eye, i have been off work for nearly a year due to having multiple eye surgery to try and get some vision back but was unsuccessful.During this time i could not drive and was told to apply for a blue badge which was refused due to the fact i was not registered with a certificate as sight impared, and then was told to apply for disabled living allowance which i got the same answer back ,although the surgeon give me a letter saying i now had a disability as been visualy impaired in both eyes and i had to hand this in to my employers insurance plus my own which has now gone up.he told me i was in a grey area where i am just borderline legal to drive and that although on paper i had a disability of visual impairments i could not get any other sort of help apart from verbal advice.i am not back at work yet as waiting for my sight to recover a bit more (hopefuly soon) but during this time i could not manage on my own and could not get no help as i do not fit any of the criterea , but luckily i have a wife and family that could help me some people might not.everybody who suffers from KC knows how much we are affected everyday by the condition but trying to explain how variable our vision is throughout the day to people who dont have it think we are making it up.so if there was a new sight registration where it was recconised more people would understand and we were entitled to some of the care,support and help partialy sighted people get it would make life a little bit easier.me personaly would be helped with a blue badge for the bigger car parking spaces,visual aids for helping me at work and home and financial help for multiple changing percriptions eye care,insurance ect.hopefully something might change and give us all the help and support we really need cheers.