KC group literature

[Loopy-Lou]

Thanks Lynn spot on.

I totally back variable sight registration [as I've raised before] because of how it would help us with employers, educators, accessing supports, general quality of life [as someone who could never speak about it in my youth]. I totally back temporary registration.

What I want to see are ALL optical groups speaking with ONE VOICE on these issues - I mean all the professional bodies, all the peer support groups, all the campaigning groups. If we all back a package of changes [temp/variable reg/badges] then this would be a substantial step foward for KCers, but we do all need to work together for this greater good. Ok, some individuals or groups will do more of the research and leg work than others - it doesn't matter - so long as all the groups can 'sign up' for it - back it in name [then everyone takes the credit].

So my response is:

1] Will the KC committee discuss this and come back to the forum with a decision about whether this is something you will support?
Could a simple poll be set up on the forum to ask members what they think, yes, lets do it/no, lets not?

2] Could KC members please start writing your own case histories which could be used as evidence which is needed for preparing the case for the above - we need you to tell us about your 'variable' vision, how impaired are you without lenses? [you can offer ordinary examples you don't have to have the figures] How does this affect your life?
Has your work or education suffered because of there being no recognition of your variability both in your condition throughout treatment stages and with/without correction? Have they not taken you seriously when you've said you can't do your work because you can't wear your lenses and demanded access to your medical records, demoted you, or refused to offer material in a larger font? Ever lost a job or access to a course? Have you been told your condition is not covered by existing legislation? Ever been disbelieved by non-eye health professionals about your condition? Ever been refused help by a sensory impairment team telling you to get your lenses fitted better because they don't understand the problems of KC? Ever been refused temporary sick pay or benefits because of the same problem?
Do you have good sight with lenses but can't use them for emotional reasons or cannot handle them [inserting/removing].
Do you have to choose between seeing for work or seeing your kids/emails/newspaper/emails because of restricted wear time?
How has your variability impacted on your quality of life?

Write it up.

Lynn, would you be prepared to receive these accounts? If so how/where [PM if people don't want to post on the board, or email]?

Some of these questions could also be an online survey, please could the committee also consider this?


Lou

[Lynn White]

Lou

A lot of the questions you ask in section 2 are exactly why this registration is needed. Any personal accounts of issues please send to me via PM or
email: lynn.white@lwvc.co.uk

It would be useful if you post your experiences here to ALSO email me with the relevant details so that I can keep track of everyone's comments.

Lynn

[Anne Klepacz]

Lou, I'd already told Lynn that I was 100% behind trying to get registration to take account of both the 'part time partially sighted' status and the temporary visual impairment category when she e-mailed me about this yesterday. And yes, we'll certainly talk about it at our committee meeting next week and I hope all the committee will be backing this and getting as many people as possible to contribute to the debate. It would be excellent if we could get health professionals and the people who make the rules about registration to have the imagination and flexibility to see that registration can give people access to more services when their vision is at its worst and that registration can be a temporary thing. There clearly are some consultants who are already using registration in this way, but there are far too many who don't. And there's currently no recognition for those people whose lens wearing time is very restricted with all the problems that brings.
I didn't for a moment intend to belittle the problems that some of us have in my original post - after all, the KC Group wouldn't have started when it did if I hadn't had several years of failing sight and fear of losing it altogether! But your original post was about a sentence in the information booklet, and I didn't want to go into the registration issue because I knew this was something Lynn was intending to raise. Perhaps this really needs to be two separate threads (I'm not going to try to separate them myself because I'd probably lose the lot!)
I'd still welcome other people's views on the original question of what the booklet should or shouldn't say. But on the issue of registration, I'd certainly welcome anything that recognised the strange half way house that some people with KC and similar conditions find themselves in.
Anne

[Lizb]

maybe worth putting in the booklet that some people have been registered "blind" and that some have since come off the registered blind list. It may also be worth putting that the condition doesnt cause total blindness but due to problems with contact lenses fitting/hydrops etc that vision can become very limited for periods of time.

[Lynn White]

Hi Anne

Yes I'd appreciate a new thread for the Vision Registration if possible!

Lynn

[rosemary johnson]

I've been registred PS for a few years now.
As regards registration - I think the simplest and, to my mind, best thing to do would be simply to add a "time of correction" condition to the existing registration criteria.
FOr example, uncorrected eyesight of 3/60, correctable to 6.6. or better for no more than one hour a day, could count for blind registration.
And/or a sliding scale of time/acuity of correction ; up 60 5/5 for an hour, up to 6/36 for 6 hours a day....
I'm sure a reasonable scale could be concoctoed....
The thing no-one has yet mentioned that is more complicated still is that of light sensitivity.
One may have 6.6 vision, and not be able to use a modern computer screen at all because one cannot tolerate the brightness of a lit up screen because of one's light sensitivity. ANd so, one has 20/20 vision on paper, but needs specialist adaptive speech output and/or Braille displays to use a computer.
I don'thave an easy way to suggest for taking this into account - but clearly it can be a problem (that basically is my main problem, is why I needed to get registered as PS - to get access to the specialist access technology mit, and more to the point, fto training in how to use it) - and a graft has made it far worse for me.
Suggestions from others how how to address this welcome - I fear it is something that, though necesary` may fall between medical stools, as it were, as it is not a simple problem to diagnose, let alone treat, and in fact may not be a "eye" problem but a neurological condition.
As regards the leaflet -
I'd suggest something along the lines of ... most people with KC wi
can get good vision with the use of some of the great variety of types of contact lenses now on the market.
- and something about new technologies such as CXL, intacs, helping to keep people with good vision.
And then something like:
RarIt is rae, but occasionally happens, that people with KC do find their vision deteriorates, and they have probelsm with contact lenses, enough for them to meet some of the legal dif
sorry ,, computer prlems...
meet some of the definitions of legal blindness.
It is very very rare for KC to result in total loss of vision so the world is completely blank and lack.

Hope this is of some help. Will think about this som emore, especiailly as regards registrations.
I do think it is use to think about what registation can offer to the person - for example, access to access technology and training, or to benefits, or the famous bus pass, or.....
As regards "temporary registration" - it strikes me this ought to correspond to the DDA definition of disability - which talks of "long-term condition" generally taken as a year or more. A blindness state which might last a year or 18 months while waiting for and recovering from a graft would thus qualify, whilst a hydrops that might last 3 months ought to be counted under the same category as an illness, with doctor's notes not a disability status.
If you see what I mean.
Rosemary

[Loopy-Lou]

No worries Anne, I understand where you're coming from now. I know you support temp/variable reg.

[Anne Klepacz]

Coming back to the original question about the KC booklet wording, just to let you know that we did talk about this at the committee meeting and have now raised the question with the author of the booklet. She's going to think about some alternative wording and come back to us so I'll report back then. And while we were looking at the booklet, we realised that it didn't mention all of the various contact lens options, so that will be updated too. Thanks to Lou and Andrew for raising this.
Anne

[Loopy-Lou]

Thanks ever so much Anne and to the committee

[optom]

You guys don't know how lucky you are in the UK. I pay fully for all lenses and all consultations with my optometrist . I had to elected to have my surgery privately to ensure of the best care which cost thousands and now i am treated as every one else in a public out patients department queuing for hours to see a HSO who some time honestly don't know the left eye form the right and with out fail will try and put fluroscein on my soft piggy back monthly lens, and this is after paying close to 20 ,000 for private care.

To be registered as blind in Ireland you must have worse than 6/60 in the better eye corrected or a visual field of 20 degrees or below . So if you can manage that 6.30 letter for 2 seconds with a contact lens in your eye , good night to you even think about calling yourself BLIND!!!!!

I am only realizing while reading this that KC can blind i was under the assumption you would never be left without sight . It very upsetting to hear at 22 yrs of age knowing that you hopefully have a full life ahead of you but you have to carry a burden of potential blindness at any corner.

Emotionally
Optom