Advice needed

[aimlette]

After another visit to the hospital today (over an hour's wait ) I'm told I do have a distorted lens to go with the KC, but that surgical correction is not recommended. As Contact Lenses allow the distortion in my eye lens to become prevalent, once the KC is taken out of the equation, CLs are not going to work for me. So basically, it's get used to this vision in my specs. I must admit to feeling a bit miffed at the moment, as it has taken nine visits to the hospital to get to this point - time which I have to work back at my place of work - only to be told there's nothing can be done and to get used to it. If only I had been to the optom on this site's list first I could have saved myself a lot of time and frustration, as it was his suggestion that alerted them to the lens distortion - so full marks to the list!

I'm told that, despite only being diagnosed at 29, at the age of 30 it's very unlikely the KC will progress and therefore I can hope to remain in glasses for a good may years yet. I'm not sure I'm convinced that KC won't progress in me, as I wasn't having KC-type vision problems 2 years ago, but then only time will tell.

I suppose this is good news in a way. Well, thanks everyone for all your help and advice, it made a big difference. And good luck.

[Andrew MacLean]

aimlette

I am a bit puzzled by what you say about contact lenses?

It is true that KC does not progress so fast in those who develop it later in life.

Stay in touch.

Andrew

[aimlette]

Hi Andrew

I think the thinking is that the contact lenses cancel out the effect of KC on my vision, allowing the distortion of the lens to be more prevalent. With just glasses on the two disorders cancel each other out to a degree.

I'll certainly keep visiting the site.

Amy

[Andrew MacLean]

The idea of rgp contact lenses is that they present a "normal" shape to incoming light, so that it is not scattered before it hits the lens. There should be no distortion from the lens.

The really clever thing about contact lenses is that, having corrected the shape of the cornea, they can then correct the vision by refracting light to eliminate our native short or long-sightedness.

Maybe one of the Optometrists could give a better description of this.,

Andrew

[GarethB]

Aimlette,

You have a recognised disability which requires visits to the hospital. My understanding from my employers is that any medical condition that requires visits to the hospital is coverd under paid sick leave, even if you are gone for a couple of hours. I was told this means they are not breaching the disability discrimination act.

Hospital appointments for us are really hard to predict the duration and not all of us have a choice as to when would be convenient.

[aimlette]

Gareth

My employers brought in a new flexi-time system for my department and when the rules were explained all appointments, inlcuding hospital ones, had to be worked back. I challenged this and was told again that I had to work my hospital appointments back. This challenge, not just from myself, has gone higher and clarification is being sought. But for the meantime, I have to work the hours back. A nightmare! Like you say I have never known how long I am going to be there, have minimal control over appointment times and am often kept waiting when clinics are running late (like yesterday). On the plus side, if the ruling is overturned, I'll get all the time back, which amounts to about a day in just two months. But I would have rather not had to do it in the first place. In any case, the hospital have now discharged me and told me to get used to this vision in my glasses and find an optom in the community that has an interest in KC (so I'll stick with the one from the web list.) There was the underlying suggestion that I have little to complain about as it is just one eye. It's probably true.

[GarethB]

My company has a flex system too, but sometimes hospital visits can take all day.

If I have a 11 am appointment, by the time I get to work I am there for a a couple of hours before leaving for hospital. When I egt back there is only a couple of hours. Such a disjointed day is far from productive.

Contact Citizens Advice for further clarification, but because you have a disability, your employers are obliged to make reasonable adjustments. All my hospital visist are recorded and sent to HR.

If you take they say literally, and you ahve an accident at work resulting in a trip to casualty, they will also want you to work bak the hours. Not exactly friendly or moral boosting incentive for employees to think they are a good place to work for. There is also the government promoting Work Life Balance and making you work back hospital appointments goes against that.