Variable sight registration poll

General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

What benefits would you like to receive?

Recognition for my condition
51
29%
Access to Low Vision Aids
36
20%
Personal Care Assistance, e.g. food preparation, accompanying to appointments
8
4%
Enable independence
20
11%
Assistance with psychological issues, e.g. access to counselling
26
15%
Entitlement to Government benefits, e.g. Disability Living Allowance
37
21%
 
Total votes: 178

linda
Newbie
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Joined: Sat 12 Mar 2005 5:18 pm
Vision: Contact lenses
Location: St. Albans, Herts

Re: Variable sight registration poll

Postby linda » Mon 19 Jul 2010 12:21 pm

How frustrating it is to get any sort of help or recognition being a part-time sighted person. It is not my choice to shorten my day simply because my eyes are sooooo tired I simply cannot tolerate the continuous wearing of several different lenses per day!! Oh how lovely it would be to be able to see well into the evening or night - not to have to juggle with different lenses all day long so that I can get through a day - not to have to continually bathe my eyes to reduce soreness and dryness - to be able to just get up and go - to read without straining - to go out without my cabinet of optical supplies in the event that my lenses fail my, as so often they do. I am a stay at home mother of 3 children - reading is becomming more of a struggle! I am limited in what I am able to do! Would you want to employ someone who is not guaranteed to have a day's vision and who has to keep stopping to re-apply visual aids?
Linda J

ollieroberts15
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Posts: 1
Joined: Mon 19 Jul 2010 7:20 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Variable sight registration poll

Postby ollieroberts15 » Mon 19 Jul 2010 7:44 pm

Hi

My girlfriend donates to the group and registered for us to receive the newsletter, this month's is very informative. I am a 29 year old KC sufferer, I'm fortunate enough to be able to wear scleral lenses all day every day with little distraction to my life. Without these lenses however I really couldn't see at all.

My immediate concern here would be car insurance premiums for drivers, and people registering thinking perhaps they may get a small DLA as recognition for their condition, but by registering as having variable or temporary sight would mean that they would then be obliged to inform their insurers and consequently receive a big increase in premium. Hopefully you can confirm this would not be the case, but it was my initial reaction to reading the article and make me reluctant to register as variably sighted.

Despite this I think it's good that it's being considered, as a person with advanced KC could very easily find themselves unable to work with a slight change in circumstance regarding loss or inability to wear lenses, or temporarily unable to see due to a graft or during a recovery period, without any official recognition or support for the condition.

Thanks

Ollie

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GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Re: Variable sight registration poll

Postby GarethB » Tue 20 Jul 2010 7:56 am

I've raised this with the Institute of Advanced Motorists whom my insurance is with and they have said this shouldbe be no problem as anyone griving a car be they wear contact lenses or glasses have a legal obligation to ensure they are driving with vision that meets the standards to drive the particular vehicle they are using. It's worded like this because the driving requiremnet for a Public Service Vehicle (Bus) or a heavy goods vehicle are slightly different to those for driving a car.

Therefore for example my wife who only has regular astigmatism and is very short sighted (without vision correction she can only see te top letter of the eye chart) were to drive without glasses, she would not be covered by her car insurance and would be committing a crime under the road traffic act. The same would apply to me if I were to drive without my contact lenses.

I've informed my insurers about my KC for over 23 years and the past 20 years that I have had a graft in each eye and it has absolutly no affect on my policy, they just say as long as my vision is corrected when I am driving, my policy is valid.

So as far as I am concerned variable vision registration will have no affect on car insurance as you wouldn't be driving if you can't see properly anyway, but you would want your car insured should something happen to it while it is left on your drive until you can see to drive again.
Gareth

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Sweet
Committee
Committee
Posts: 2240
Joined: Sun 10 Apr 2005 11:22 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: London / South Wales

Re: Variable sight registration poll

Postby Sweet » Mon 26 Jul 2010 10:08 am

Lynn I apologise for my earlier post, was just having a down day with MS and nothing related to KC at all :roll:

I understand why we are asking people to comment on this poll as we need to see if people do think it is a good idea and feel that they would benefit from having some recognition concerning low vision. It would certainly help all conditions where the symptoms and problems come and go, as you would be able to say that it is temporary. Sadly benefits and help for all conditions at present are only aimed at those with a permanent disability. For those with KC who can see perfectly well most of the time, but get 'bad eye' days, lose a contact lens or go for surgery there is nothing.

If this recognition does come into effect, it would certainly help those who may have to take a day off work and feel that they need to justify this to their employer.

As to driving, you have to declare your health anyway as your insurance will be void if you don't. I need to renew my licence every 3 years because of MS and DVLA gets in touch with my consultant to make sure that I am still fit enough to drive. I am just in the process of sending it back as I am only legal through to October. I have declared KC, but I think the DVLA are giving us the right to drive if we feel we are fit enough to do so. We have to be responsible for ourselves and know that if something did go wrong we may not be covered legally. I have had a peripheral vision test years ago, but KC doesn't affect this so I was ok. I guess they will get in touch if they want to check your vision and we should be aware of our own limits.

The whole idea of variable sight recognition I think would take KC to a different standing. At present some still see KC as a condition where we will go blind. Hopefully this would show that we are fully able to contribute to society, just sometimes we can have some vision loss and need time to recover.

Andrew, I am with you on the cookies post! I think that a lot of people have come back and read the posts and had a look at the poll a few times! I will ask John if a member is only counted once as this does show a lot more visits in respect to the number who posted.

Love Claire X x X
Sweet X x X

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Lynn White
Optometrist
Optometrist
Posts: 1398
Joined: Sat 12 Mar 2005 8:00 pm
Location: Leighton Buzzard

Re: Variable sight registration poll

Postby Lynn White » Mon 26 Jul 2010 7:43 pm

Thanks Claire...

No problems at all! :)

You are absolutely right about driving. Some of the other sight charities are anxious to change how the DVLA deals with vision. To my mind, its current state benefits people with vision issues very well at the moment. If you know you can't see at a particular moment in time it is up to YOU not to drive. If this gets made more complex then it will be the devils own job getting changes to your licence through in a timely fashion!

Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision

email: lynn.white@lwvc.co.uk

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Sweet
Committee
Committee
Posts: 2240
Joined: Sun 10 Apr 2005 11:22 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: London / South Wales

Re: Variable sight registration poll

Postby Sweet » Mon 26 Jul 2010 8:42 pm

Lynn I fully agree :lol:

Ollie - We need to inform the DVLA that we have KC and that we can see well enough to drive even if we do need glasses or lenses. We just have to make sure that we are wearing any aids when driving as our insurance wouldn't be covered without them.

When you inform DVLA they usually send you for a vision check to make sure that you can see well, but I haven't had to be seen again since I declared it. As for our insurance, I don't think that your premium would be affected, as a lot of people need to wear glasses or lenses to drive.

I believe that the legal driving standard on a Snellen chart is 6/12 but I'm sure that friends here will tell me if I am mistaken! It has been so long since I had to think about it. (Right now I am just talking baby talk!! Lucy is very very chatty and I feel that I need to reply!! :wink: ) You can legally drive with only one eye so long as you have peripheral vision and meet the driving standard.

Hope that helps, love Claire X x X
Sweet X x X

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mollymoo
Newbie
Newbie
Posts: 1
Joined: Thu 05 Aug 2010 9:01 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Variable sight registration poll

Postby mollymoo » Thu 05 Aug 2010 9:37 pm

i had keratoconus in both eyes more dominant in my left eye than my right eye then had an accident at work and lost my vision in my right eye.I am just legal to drive and have had to inform work and my own insurance which has gone up a lot. I would benefit from a blue badge as car parking spaces are bigger as my depth perception is a bit off and as well as all the other issues associated with keratoconus. But because i am classed as having visual impairments and they are in a grey area and do not fit into any category so i can not get help ,i would find it helpful if they did change it to variiable sight registration so then i might get some sort of help to make day to day life a little bit more easier.

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Andrew MacLean
Moderator
Moderator
Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Variable sight registration poll

Postby Andrew MacLean » Fri 06 Aug 2010 6:13 am

mollymoo

Welcome to the forum and thank you for taking part in this string.

Every good wish

Andrew
Andrew MacLean

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Paul Morgan
Chatterbox
Chatterbox
Posts: 291
Joined: Sat 06 Nov 2004 3:11 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Yeovil, Somerset

Re: Variable sight registration poll

Postby Paul Morgan » Tue 10 Aug 2010 7:59 am

I'd llittle help with the cost of lenses and solutions...I dread to think what we all; spend each year.

I doubt that will ever happen though.

Strange really, if I needed a wheelchair - the NHS would give me one, if I needed pills to control say Epilepsy - the NHS will give them to me, but I need solutions and lenses for KC so I can see - gotta get them myself.


Note - I know lenses are subsidised...a little. :(

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Andrew MacLean
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Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Variable sight registration poll

Postby Andrew MacLean » Tue 10 Aug 2010 8:11 am

Actually, lenses are subsidized quite a lot. :)

You are right; optometry was kind of an afterthought when the NHS was being invented and, like dentistry, it still sits uneasily on the edge of the service. There are several anomalies, but to correct them would involve a fundamental review of the whole service, and I think that there is probably no political will for the sort of fall out that such a thing would involve. So, we soldier on.

Andrew
Andrew MacLean


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