New Sight Registration possibility for KC: Input needed

[GarethB]

Thanks John from everyone at the ICf for doing this.

[clare f]

Hi all, this is a very intersting topic.
Whilst this registration would benefit me it seems, as im just about to apply for my first jobs after finish university, so for employers etc this would be usefull. I think this new registration would make people more aware of KC...

However I dont know if it's just me, but I would be a bit aprehensive to register in ways of other things. I think in some circumstances it could cause other problems i.e. driving, would this registration promote KC suffers to be 'tested' more often to see if sight was safe for driving, driving is my life and will be needed for jobs im looking to do, and so if the propspect of being tested more often etc and could possibly- in the worse case end up me not being able to drive, then I dont think I would register for it. obviously if sight is so bad you driving would be dangerous to you and others, i'm not endorsing this in any way, but why go through all the extra stress and anxiety of being tested more, when this is already a stressfull enough condition to deal with!

It hard because it's swings and roundabouts, I feel it has upsides and downsides to this new registration. Whilst it would maybe be voluntary registration at first, who knows in the future that they wont make this a compulsory registration for KC suffers?

Clare

[Andrew MacLean]

clare

I think that we are supposed to let the DVLA know that we have keratoconus. They ask for our hospital to confirm that we can see well enough to drive, and when we have our routine vision test they (and we) are informed if our vision has fallen below the legal minimum for driving.

Andrew

[clare f]

ahh ok becuase i was told by all my consultants that I didnt have to declare anything with regards to driving. I will ask again at my next visit,
Thanks

[Andrew MacLean]

I think that this is an area where many people are confused. check the DVLA site for the definitive answer

http://www.dft.gov.uk/dvla/medical/about_dri_med.aspx

Andrew

[Lizb]

ahh ok becuase i was told by all my consultants that I didnt have to declare anything with regards to driving. I will ask again at my next visit,
Thanks

I was also told this regarding normal licences, however as i had a PSV licence at the time of diagnosis I had to declare. I was sent a form that my optician had to complete (along with an eye test at the same time). Since then all my licence states is that i need glasses/contact lenses for vision correction. The advice i was given by both DVLA customer help service and the bus company's (i worked for at the time) doctor was that it was my responsibilty that i could see well enough with correction for driving my car (lost my psv due to slightly different rules regarding eyesight). since then i have obtained my motorbike licence without problem.

My way of checking is everytime i have an opticians appointment I always ask "am i legal to drive?", especially as i rely on one eye in glasses (dont wear CL anymore). I did go through a period about 18 months ago where I was borderline due to problems with dry eye and contact lenses and my opticians advice then was to be sensible - it was one of those situations where i was at the opticians nearly every other day and one day i was legal then the next i wasnt.

I would hate to be without my licences (esp as my way of relaxing is to get out on the bike and clear my head), and my job states that i must have a valid licence and car available when required - however under DDA regs your employer can not discriminate against you if you are unable to drive as a result of a disability (except in the cases of bus drivers or similar jobs), they have to make the necessary adjustments to allow you to continue in your role.

[GarethB]

Even the DVLA are a bit vague on this as I found when I called them back in 2004 because of the same vague reasons regarding KC being recognised as a disability under the disability discrimination act because we only have problems when we can't wear lenses but doesn't necessarily take into accoun that for many the condition is progressive.

I have called the DVLA on several occassions since and still get told yes I need to declare and then when I call again, I get told no because I have proper corrected vision. Therefore to make sure that I am covered I declared it any way, perhaps the variable vision registration may help clarify things for organisations such as the DVLA.

Regrdless of eye condition, we have a legal obligation to make sure that while we are driving we meet the minimal vision standard. Failure to do so is not only dangerous but would render your vehicle insurance void. I informed by inurers and they treat my KC just like someone who wears glasses or contact lenses for vanity so the premium is completly unaffected.

[Lizb]

Regrdless of eye condition, we have a legal obligation to make sure that while we are driving we meet the minimal vision standard. Failure to do so is not only dangerous but would render your vehicle insurance void. I informed by inurers and they treat my KC just like someone who wears glasses or contact lenses for vanity so the premium is completly unaffected.

that is so true Gareth. it is our own responsiblity to ensure that we and our vehicles are road legal all of the time - if our car had a problem we wouldnt carry on driving it until it was fixed, same with our sight on our bad days.

My sister works in the insurance industry for a broker, and she has actually asked all the major insurance companies if we need to specify KC as a condition or just that we need corrective aids (CL/glasses). all of them replied that just declaring we need corrected vision was sufficient - what they would say if we turned around and claimed for the cost of new specialist CL in the event of losing one in a non-fault accident i dont know

[clare f]

Once again, there are so many different stories people get told and it's so inconsistent! hence why this new registration would be a good thing. I totally agree with what you both say like I said above
"obviously if sight is so bad you driving would be dangerous to you and others, i'm not endorsing this in any way".

[Lynn White]

Interesting points here.

What the registration is intended to do is to make it easier when you are having problems and to get recognition for the condition. In fact, as I am now discovering, there are many other people with a various range of eye conditions that have very similar issues to those with KC. Their vision may be variable due to their eye condition (eg uveitis, nystagmus) or due to changes in general health (MS) and other people may just not fall into any particular cut and dried area defined by Snellen.

The situation with driving is that as a responsible person, you are required to exercise judgement on when you can and can't drive. If a "normal" person lost their glasses, they would not have to report to DVLA, just refrain from driving until they got replacements. I also cannot forsee any time at which this registration would become compulsory. DVLA already have their regs and most occupations dependent on good vision have regular medicals and eye examinations to ensure safety, so there would not be any need for this. Registration is seen as an aid to people NOT as a punitive exercise to prevent people doing things.

One thing that may come out of this is that if the condition is recognised by registration, it may then be possible to argue the case for "specialist" contact lenses with insurance companies. At the moment they do not recognise such lenses as necessary. It is interesting that many professionals outside the field of KC are astonished that these lenses are not covered.

Its often the case when changes are suggested that although people have been asking for "something to be done" for along time, when it starts to happen, there is a feeling of uncertainty as to what other cans of worms this action might open. This is precisely why I am asking for as much input as possible so we do forsee any potential pitfalls and avoid them.

Lynn