Quicktopic posts: Nov 2003

[Guest]

I will not be accessing my email until 03/12/03, for urgent matters please contact the service centre on 0800 154 234 Regards, Aimee.

[Rick]

Afternoon,

Does anyone have any experience registering with either their local authority or the Inland Revenue in order to claim the blind persons allowance. It's hard to see if our condition would warrant inclusion. Being effectively blind in one eye (Well I can't read the top line) and sighted only some of the time (As I'm very lens intolerant) would the allow us to qualify for the allowance. God knows the addition financial help would be of benefit, constant hospital visits, lenses and solutions get expensive.

http://www.inlandrevenue.gov.uk/pdfs/ir170.pdf

Regards,

Rick

[Andrew Thomas MacLean]

Dear Rick

The key to registration is a certificate from a Consultant Opthalmologist (eye specialist). S/he sends this to your local authority, who put you on their register from the date of your hospital appointment, and from that point it is possible to register with the Inland Revenue. Everything is back dated to the occasion that your opthalmologist decides to register you.
The opthalmologist will register you as blind or partially sighted, depending on the degree of sight loss. I'm afraid I don't know the precise details of how much sight you have to lose before you qualify for registration.

It is a big problem with KC that many people, including many GP's seem never to have heard of it, and some health areas don't even have a code for it, so that GP's can find it hard to know how to enter KC in their computer data base.

Antother problem is that each of us will have a different experience of living with KC. For some the amount of sight loss is minimal, for some lenses of various sorts seem to work well, for others there is a profound loss of sight and for a few there is an experience of blindness.

If you've got an understanding GP ask for a referral back to the Department of Opthalmology, and speak to the specialists about the difficulties you are encountering.

All the best.

Yours aye

Andrew
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>From: QT - Rick <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Wed, Nov 26, 2003, 12:34 pm
>

< replied-to message removed by QT >

[Peter]

Hey,
I'm new here, I'm 18 years old and a first year at Medical School.
Last week I was at an RAF station having a medical to see if I could join the RAF, which is all I've ever wanted to do. During the eye test the guy noticed something and I had a corneal mapping there and then and he and the Senior MEdical Officer both think its KC. I went to my GP the next day who knows nothing about it but Ive been referred to a Speciallist, im just waiting for an appointment.
Basically Im asking : What happens next??

Other than that I feel awful. The career in the military has gone, (KC is one of the chronic eye conditions that renders you Permanently Unfit fot military service, even in a ground branch like medical officer) and the rewards and oppurtunities that go with it have gone also, so gutted is an understatement.

[Rob Armstrong]

Hi Peter.

Sorry to hear about that. I was diagnosed at the same age, and at the time like you, was thinking "So what happens now? & how's this going to affect me?"

This has probably already been explained to you, if not it will be when you see the specialist. Basically for an unknown reason, some people's corneas begin to change shape, usually in their mid to late teens. The cornea becomes increasingly irregular, and more conical in shape (hence the name KeratoCONUS) and this affects the way light is focused as it enters the eyes.

The truth is that pretty much every case of KC is different, and when you see the specialist, he/she will only be able to give a general idea of how it could effect you in the future. Keratoconus tends to be progressive, but the extent and rate this happens can vary massively.

Sorry to be so vague, but as for "what happens next?" in the short term, your specialist will probably just want you to attend check ups to monitor the situation. If you were not aware of problems with your vision prior to the RAF medical, then you are only in the early stages and you may only need glasses, if that. There's no need to go into all the details of what may or may not happen for the moment.

Make a note of any questions and worries for when you visit the specialist, and take someone with you if possible. It can be a lot to take in at first!

Hope that helps, no doubt other people wil reply with their thoughts and experiences

Rob.

[listener@umbilical.demon.]

Rick asked:
Does anyone have any experience registering with either their
local authority or the Inland Revenue in order to claim the
blind persons allowance. It's hard to see if our condition would warrant inclusion. Being effectively blind in one eye (Well I
can't read the top line) and sighted only some of the time (As
I'm very lens intolerant) would the allow us to qualify for the allowance. God knows the addition financial help would be of
benefit, constant hospital visits, lenses and solutions get
expensive.


I'm registered as partially sighted.

I can't read the chart at all without lenses and the wearing
time varies a lot with the lenses.

You have to get the hospital consultant to fill in a big form
for you - and some people say that the biggest hurdle is they
don't like doing this because it is a long form with something
like 8 parts of carbonless copies, and this form itself deters
them!! Apart from this (myth or not), it seems to be a postcode lottery as to the attitude of your consultant. I had to push
really hard at Moorfields, plus point out to them that I'd been
unemployed since Date X, and needed to retrain to use special
adaptive technology and couldn't get on the courses without a
registration number. It came about eventually.

So, if you try going this route, be prepared to keep badgering
the medical profession and not give in to them, and also have a
case prepared for how the registration would help you to be able to help yourself (eg. enable you to train/get special
facilities). And if still getting nowhere, raise the issue of
the "postcode lottery" point blank, and ask for a second opinion.
Cynic? Moi???

I'm not an expert on the "rules" on this, but think from what
you say I'd think you've a good chance of going for
partially-sighted registration. Unfortunately, this doesn't
give the tax allowance - but it does give plenty of other
benefits, ranging from public transport passes/disabled
railcard, to VAT-free equipment, free directory enquiries, etc.


What happens is that the hospital send one copy of this
multi-part form to the local Authority, who then register you,
and send you a letter with your registration number (there is no "green card" as such). They will then, probably, try to send a
social worker round to "do an assessment" - which you may find
useful or may want to tell them to get lost; if you don't want
to be assessed, you don't have to be. But you may have to
insist that they don't, and that they send the registration
number letter even if the person isn't going to come round and
patronise you rotten. (I hope you have better experiences with
LA than mine, which have mainly been not-very-bright people in
social services who apparently treat everyone as if we're idiots.)
There is a very useful leaflet I got from Moorfields medical
social workers which lists lots of entitlements, with columns
for "blind" and "p/s" and ticks to say who is eligible for
what. I'll try to find it and look up who it was produced by.
The other thing I got from Moorfields was a set of forms for DLA (disability living allowance) and recommended that now I was
getting registered I should apply (which I didn't in the end as
I didn't think I could make a good case) - it's a very
dispiriting thing to go through the process for this, as you
have to concentrate on all the things you can't do on the "worst case" times and lots of folks who try end up very depressed.
Kate (I think???) posted some good advice about this on here not so long ago - if you're reading this on the web site, I suggest
a search back through the messages to find DLA advice.


Rosemary

--
Rosemary F. Johnson

[Andrew Thomas MacLean]

Hello Peter

What can anyone say? Doors close and others open ... all hopelessly inadequate, I know.

With good management your condition may be comtrolled by wearing contact lenses. I had over 20 years of good sight corrected by corneal lenses before my hospital optometrist had to try others.

I'm not surprised that your GP had not heard of Keratoconus, but I'm prepared to speculate that you are not the only patient on his/her list who lives with the condition.

You have a unique opportunity to make a real contiribution to the understanding of the condition, and I hope that your disappointment with the RAF does not prevent you from completing your academic and clinical work.
Yours aye

Andrew

[Rosie Turner]

Dear Peter,
It must be a shock and really difficult at the moment because suddenly everything has been turned upside down but things will start to look different. I was diagnosed when I was seventeen and went on to do a degree in English, train as a nurse, have three children and have been working full-time until recently. I can honestly say that, until this summer, and 26 years since I was first diagnosed, I have barely given the fact that I have keratoconus a thought. You adapt to what you can see and I think your brain adapts too. I had corneal grafts in my early twenties, in each eye, and these healed well, were crystal clear until recently and I have been able to see well enough in one eye, with spectacles or with contact lenses to carry on a normal life, apart from having to stop driving a few years ago. But,I've cycled everywhere since, or taken the train, and am probably fitter for it (and more environmentally friendly!). In the last few weeks I've started to learn more about keratoconus and corneal grafts because one of my grafts has now failed and I've started to have problems in the eye I can see with. But, what I've learnt makes me realise how much can be achieved with contact lenses and that its really important to seek out the very best treatment you can find and keep at it. There is so much information on the internet, or available by sharing experience through groups like this, and I'm sure you will find that will help. You'll get to a point in your life, years ahead, when you can look back and realise that things happen, you change course but things work out, not necessarily how you planned but so that you wouldn't go back and change things, even if you could. Perhaps this will mean that you will pursue your medical studies rather than a career in the RAF and you'll kind of make sense of it all with time. all the best
Rosie
< replied-to message removed by QT >

[Andrew Hill]

Deleted by topic administrator 28-11-2003 02:09 PM

[KateF]

to Rick
osemary mentioned that im a bit whizz at applying for Disability Living Allowance!! Well i do have some hints.. and my son gets highest rate!! email me if needed on kdfarminer@tiscali.co.uk
Hes registered partially sighted which hasnt made any difference at all until this year wheni suddenly decided i wanted the parking disc and got it mo trouble. very handy for nipping into town free! wish id had it years ago
Kate