Ok,So I've Just Been....

[asho1976]

hi fellow KC'ers.thought i put this out there and hopefully someone else has gone thru the same and can shed some light on what i may have to deal with next....i was diagnosed with KC in both eyes with my left one being far worse than the right,i've been off work since april 2010.ive had two lots of hard contacts lenses to which i cant tolerate and im now waiting to attend hospital later in jan to try a soft lens. my ssp ran out at the end of sept which led me for the first time ever in my life having to ask for help from the DWP.i have just been to my medical assessment with ATOS and was informed that the decision is based on the working life as a whole and not job specific which has me worried as i drive a bus for a living and i'm restricred by DVLA hence not being able to work..I'm really worried now that i may loose the EMPLOYMENT AND SUPPORT ALLOWENCE i have been getting due to my ATOS result..has anyone else been thru the same and could possibly shed some light as where to go if the worst happens

[Anne Klepacz]

Hello Asho1976 and welcome to the forum,
Do the people you see at the hospital know that you're unable to do your job until they can find a lens that you can tolerate and will give you good enough vision? It seems you're having to wait a long time between appointments to get things sorted when good vision is critical for your work. There are still quite a few lens options that could be tried for you - as well as the special soft lenses for KC, you might be able to tolerate an ordinary rgp if you can wear a soft lens underneath it (a system called piggy backing) and there are also hybrid lenses, scleral lenses and semi sclerals. So there should be an answer for you somewhere in that range.
Has the occupational health team where you work got involved? An employer should be making efforts to offer you an alternative job within the company while you're unable to do your normal duties. Can you get your trades union rep involved?
And as far as ESA is concerned, your best bet might be to get in touch with a charity called Action for Blind People. I don't know where in the country you are, but they have offices in various locations - you can find your nearest one on their website www.actionforblindpeople.org.uk They also have staff who are experienced in dealing with employers so should be able to help you on that front too.
I know the sight criteria for HGV (and presumably buses) are a lot stricter than for an ordinary driving licence which puts you in a difficult position. But you shouldn't be facing losing your job or benefits because of what is hopefully a temporary situation.
I hope some of this helps, and all the very best for a better 2011.
Anne
PS Have you found the leaflets about KC and work on the home page of our website
www.keratoconus-group.org.uk/site3v/publications.html

[asho1976]

hi anne, thank you for the reply...yeah the people at the hospital are fully aware of my situation regarding work and i agree that the time between appointments is a joke. my work do say they are keeping an eye out for something else i could be doing but they say there isnt anything everytime i have my regular welfare meetings. ive also had to see the company doctor to prove i wasnt faking etc and shes also someone the dvla use in these type of situations. regarding our union reps they seem to not be intrested unless i loose my bus eliment of my licence...it is all a bit worrying for me as my son was born just before christmas and he has lower limb problems to...its all very fustrating as the KC was only picked up after i had been assualted at work whilst driving the bus which was in motion when i had a liquid sprayed in my face.my own Opticians said that i had damaged my sight because of the assualt but work sent me to their Optician who said they was wrong and he diagnosed KC which was then confirmed at the hospital...

[Lizb]

I will be honest with you, though this not what you are going to want to hear. I lost my PCV entitlement due to KC - at that time i was still getting good corrected vision with both eyes (KC only in left) with glasses. I passed my PCV in summer 1997, and i know that there are grandfather rights applicable to vision correction for poeople who passed their test at an earlier date for the medical aspect. My understanding I lost the licence as i had to have a minimum uncorrected vision which i did not get in my KC eye. Fortunately for me, i had already moved into an office job within the bus company, so it did not affect my job it just meant that i was not able to do anytime overtime on the road, which i had been doing.

I do hope that this isnt the case for your entitlement, and you have a more positive outcome. Have you discussed the other options of crosslinking/intacs for yourself with your hospital?

[rosemary johnson]

If the outcome of the assessment is to want to cut your enefit - APPEAL!
You must always appeal,
There are very many cases where the first assessment wants to cut and this is overturned on appeal - probably because the people doig the appeals are more expert in what they are up to.
Hope it won;t come to that of course.
GOod luck.
ROseary

[Loopy-Lou]

this is again where a temporary or variable registration would help because as far as the DWP are concerned they are not interested unless you are registered according to current criteria

[asho1976]

well i since had my atos medical and i was shafted big time,i was seen by a occupational health nurse who asked irrelavant questions that when i gave my answers they were inputted onto their system wrongly along with a occupational health nurse sat a desks width from me holding up a eye chart (20ft being standard distance) asking if i could see it to which i said no but amazingly was entered as yes i can see it. ive since got my hands on their score matrix with you having to get atleast 15 points to continue to recieve EASA,having used this chart i should of scored at least 35 points with my answers insted of the big fat 0 that i did get, so i'am now in the appeal stage with the DWP ,with regards to work they still say they cant find me anything else at present to which the union has told me they are covering their backs by saying this. So im now at the satge wgere i have had to inform the DVLA so im now playing the waiting game...my GP has now referred me back to my consultant as my condition has deteriorated greatly in the last few months but he has also told me that after the FIT FOR WORK cert he issued me today,he has told that it will be my last depending on what my consultant says.. i've tried to explain how my vision is at this moment in time,so i guess he is implying im fit for other forms of work..can anyone shed light on what sort of work is around for us KCers, as im puzzled becuase i have been told i cant work with computers or in a office enviroment with bright lights and air conditioning or in a dusty and dry enviroment,i cant read small print,to be fair this list is endless. just feel like im not getting help from all sides and to top it off any benifits we apply for to help with things, we are being turned down for...so stress isnt the word

[Anne Klepacz]

You must be feeling gutted that your ESA has been disallowed, but as Rosemary says, these decisions can be reversed on appeal so don't give up hope with that. And you could really do with professional help to get you through this - have you tried contacting Action for Blind People to see what help they could give? I'm also a bit puzzled by the list of work situations you've been told you can't work in - lots of people with KC do work in office environments and with computers. All the things you mention do make life more difficult, but if the employer makes 'reasonable adjustments' they can be got round. Access to Work can do a workplace assessment and help with any specialist software or equipment needed.
I've also just picked up on something you said in an earlier post in this thread about your KC having developed after an assault at work. We've had other members whose KC seems to have been triggered by a trauma of some sort. I'm not sure what the medical evidence on this is, but some researchers seem to think that this sort of trigger could set off what might be an underlying predisposition to KC. It would be worth asking your consultant about this when you see him.
I hope others who've been through similar experiences will see this and make other suggestions.
Anne

[asho1976]

well i've been re-refered to see the consultant at the QMC and what a waste of space he was, he didnt want to listen that my sights getting worse,but could i get him to understand, he just wanted to fob me off by saying i had an allergy (which we already new) and thats why i couldnt tollerate the different contacts that i'd been given over the past 12 months, so he issued more drops which ive already had months ago from advice from the optromatist for lenses that dont exsist as we ve been waiting to see if my KC stablised.no matter what i said he just looked at me like i was a D**K,so its finally happen,my G.P has told me he won't give me anymore "Fit For Work" notes until he recieves the report from my consultant which is a waste of a tree,so we have requested a second opinion at the derby royal hospital,and to add further insult to injury ive now also lost my driving license due to my sight deteriorating in my left eye and to make matters worse i was called into work today and i have been dismissed on my medical condition grounds....so now i need to contact the DWP and see what they say.makes me wonder what they and the job seeker people will say for me to continue to recieving my benefits..so trying times for me and my family.