Advice Please - Commuting to/from work

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heather1888
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Advice Please - Commuting to/from work

Postby heather1888 » Thu 08 Mar 2018 9:44 am

Hey - I was diagnosed with KC early last year and I am due to get CXL in my right eye next month. I work for a huge organisation in the city centre and drive to work with my brother parking approx 0.5 miles from the office however I struggle with the glare of streetlights/headlights etc and can often feel really anxious getting to and from the office from the car (even crossing the road). I have completely lost my confidence from this eye disease and when I am having a bad day my brother has to drive as I just cant do it. I approached my companys corporate services team about obtaining a parking space onsite (and offered to pay for the "luxury") however, I was told there are none and they basically brushed me off. Does anyone have any ideas/suggestions on what i can do now? Should i escalate this further internally? HR and Occupational Health are very much aware of my eye disease and I believe my company should be doing all they can to support me. Any advice would be great, thanks.

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Anne Klepacz
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Re: Advice Please - Commuting to/from work

Postby Anne Klepacz » Thu 08 Mar 2018 11:07 am

Hi Heather and welcome,
I think loss of confidence when our vision deteriorates is something a lot of us can relate to. It would certainly be worth talking to Occupational Health about this. And hopefully as the days get longer in the next few weeks, life will get a lot easier. I, for one, hate being out after dark these days, though walking with someone makes all the difference!

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Re: Advice Please - Commuting to/from work

Postby space_cadet » Thu 08 Mar 2018 12:29 pm

sorry to hear of your lack of confidence due to your KC, BUT please if your KC is at a stage where CXL is a option your vision and KC is not actually that bad, yes that may sound harsh, but some of us have been left legally blind due to KC, n have to use a long cane or guide dog to navigate the world, and would give anything to have KC at a stage where CXL is a option, the fact you are able to drive and that is something myself and others who are legally blind due to KC can only dream of is a luxury, I appreciate that it is distressing for you how your KC is and how it is making you feel but please enjoy and cherish all you have as trust me when you dont have it you will miss it and wonder why you thought it was the end of your world prior.
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind. May 2017 a long cane user who is blind in a once sighted world

Moshraf
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Re: Advice Please - Commuting to/from work

Postby Moshraf » Thu 08 Mar 2018 3:27 pm

Hi - I've had KC for nearly 10 years and only in the last 2yrs has it got so bad, I had to give up driving at night and on some days too. Since November 2017, I have been using gas hard lenses, and it has made a world of a difference to me. I would suggest speaking to your HR department about this as it affect us all in many ways and confidence is one of them. I believe there are some grants available (Access to work Grant) through the government. You could try this. I was suggested this for my disabilities.

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Re: Advice Please - Commuting to/from work

Postby Jolly Roger » Sat 10 Mar 2018 11:57 pm

Hi Heather

If you have not already done so give your employer this with a covering letter. Keep a diary, do everything in writing so that there is a paper trail of evidence should you need to go an employment tribunal so that there is clear evidence for an assessment to made if your employer acted in a fair and reasonable manner and complied with the law - the Equality Act -

http://www.keratoconus-group.org.uk/pub ... ers_A4.pdf

The law is your employer MUST make reasonable adjustments. Remember KC can be a progressive debilitating disease.

Space Cadet as usual makes her usual positive truthful input here, a wonderful asset to the KC community!

If you can get Access to Work involved and also the RNIB who are supposed to be a charity funded to help and support us that would make your employer to proceed with caution and not choose to act in a ruthless way! People diagnosed with KC are vulnerable in a predatory corporate world.

Keep us informed on how you get on and good luck!

Best wishes
JR

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John Smith
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Re: Advice Please - Commuting to/from work

Postby John Smith » Mon 12 Mar 2018 11:04 pm

Hi Heather,

One option which may be worth considering is "Access to Work". I understand that under some circumstances, they may provide a companion to assist you on your commute.

I agree with the suggestions above though - talk to your HR and occupational health, get them to confirm that you are covered by the Disability Discrimination Act, and then ask them what reasonable adjustments they plan to make.
John

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John Smith
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Re: Advice Please - Commuting to/from work

Postby John Smith » Mon 12 Mar 2018 11:04 pm

Hi Heather,

One option which may be worth considering is "Access to Work". I understand that under some circumstances, they may provide a companion to assist you on your commute.

I agree with the suggestions above though - talk to your HR and occupational health, get them to confirm that you are covered by the Disability Discrimination Act, and then ask them what reasonable adjustments they plan to make.
John

nixy
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Re: Advice Please - Commuting to/from work

Postby nixy » Tue 08 May 2018 1:29 pm

if your struggling to drive at night I fully understand. Its a real problem for people with KC. I told my line manager at work I would leave early before it gets dark and continue working from home (if thats an option?). It took many years for my employer to understand my medical issues and I suffered greatly to the point of nearly losing my job. It seemed I was being 'picked on' due to my problems by aggressive managers whos task was to thin down the team and save costs.

Definitely get 'Access to Work' involved. They helped me a lot. You can give them a call direct without going via your employer. If nothing can actually be done, it may be a helpful exercise in getting a report in writing to your HR and line manager at work. This can aid a lot in getting understanding across via an official method. It may also encourage your line manager to be more flexible with you. In my case better equipment was also proposed such as laptop and screens with high quality bright resolution.

I didn't find Occupational Health very helpful to be honest. It was more like a GP report of medical conditions, but nothing actually describing my daily problems and difficulties. Basically just a very clinical report. Just to let you know.

At the end of the day, a lot is down to the understanding by your line manager (in my experience it wasn't great). Some can be very aggressive and just brush things a side without actually helping. And the thought of losing your job if you say too much can always play on your mind. Have a good read of the disability act at work, this will help give you confidence - I wish had done this before! I used to think "business-is-business" and who wants a 1-armed boxer so to speak when you can choose a person with 2-arms. But this is not the case. Employers have to make "reasonable adjustment" for people with medical issues and disabilities.

Good luck

DavidGable
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Re: Advice Please - Commuting to/from work

Postby DavidGable » Tue 08 May 2018 7:44 pm

Before having grafts, I struggled with the low sun around March time and put it down to tree pollen. I survived commuting by using extra strong ski sunglasses with closed sides. Good luck.


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