Advice required please

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Kyle
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Joined: Mon 13 Sep 2010 1:59 pm
Keratoconus: Yes, I have KC
Vision: Spectacles
Location: Abbots Langley

Advice required please

Postby Kyle » Mon 13 Sep 2010 2:36 pm

Hi everyone,

I'm hoping that one of you may be able to help me with some advice on KC and how I go about getting referred to a specialist.

Without boring you all into submission, this is my situation.

I found out through going to a laser correction consultation that I had KC, but at the time I was not given any information regarding KC only that I could not continue to have the corrective procedure. Left rather confused I thought that I had just had a bad experience and went to get a second opinion from another laser treatment supplier who again confirmed that I have KC and could not have corrective surgery.
The second appointment the Dr spent a good 15 mins explaining the condition and showing me pictures etc. and said that she would refer me via my GP to Moorfields.

Are you still with me ???

I gave it a few weeks and then contacted my GP to check he'd got the referral from vision express, he hadn't so I went back to Vision express who said they had sent it……..and this has gone now for a year. Now vision express say they have no record of my appointment or my results and can't help me, my GP said he needs these details in order to refer me to Moorfields.

And so it goes on, caught in the middle not knowing what to do. I've called Moorfields to see if I can self refer (which you can't) and all the time my eye sight is getting worse.

Sorry, I know it's long winded, but if you can give any advice I would be very grateful.
Regards
Kyle

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Anne Klepacz
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Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Advice required please

Postby Anne Klepacz » Mon 13 Sep 2010 4:35 pm

Hello Kyle and welcome to the forum!
What a ridiculous situation to be in and what appalling lack of care by the chain you went to. In your shoes, I think I'd be writing a letter of complaint to the head of the chain - how can they have no record?! But I'm also puzzled by your GP saying he can't refer you without the documentation. Although it would be nice to have the evidence from your visits to the laser clinic, it's only relatively recently that opticians have been writing referral letters to GPs. Moorfields are quite capable of doing their own assessment! I'm sure I can't be alone here in not ever having had an optician's letter, but getting a referral from my GP to Moorfields. If the brick walls don't give, then you could always go to one of the optometrists listed on the home page of this site www.keratoconus-group.org.uk/optoms/index.php who would be able to confirm the diagnosis of KC and provide a letter for your GP.
If it's any comfort, most cases of KC identified by laser clinics are mild (it's just that laser treatment would actually make things worse, so they're quite right to turn you away) and with luck it won't progress very far. But contact lenses would improve your vision if glasses don't so you need to get into the system.
Good luck
Anne

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rosemary johnson
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Joined: Tue 19 Oct 2004 8:42 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East London, UK

Re: Advice required please

Postby rosemary johnson » Mon 13 Sep 2010 9:57 pm

Hallo Kyle and welcome.
What a palaver!
I agree with Anne: certainly a complaint to Vision Express sounds in order.
I'd also be complaining about the GP. You have deteriorating eyesight - incidentally, is this just a subjective verdict, or have you had eye tests at an ordinary optician? Can the optician make glasses to make you see well?
Either way, you need some assistance - it may be specs, or fairly "ordinary" contact lenses will do the job at the moment, or maybe you need a specialist.
You GP ought to be able to refer you on the strength of that - plus the fact you can tell him what the problem is, even if you don't have the paperwork to show exactly how bad it was last year.
Incidentally, the condition does change - so how bad it was a year ago is quite possibly out of date!
I'd suggest a bit of assertiveness - or possibly a different GP (is it a team practice, with different partners? WOuld it be feasilbe to try a different one if your "norma" one isn't very helpful?)
You might like to look up the Moorfields web site, and check out the range of facilities on offer - and get an idea of what to say to your GP about where exactly to refer you.
FOr instance: IIRR the department that deals with people with KC is called "External Diseases". There is also a contact les dept that covers a range of options; I think you'd have to be referred to a medic first and then they'd pass you on to the contact lens people.
There are several consultants who deal with KC - some have spoken at KC group meetings/conferences; I think they are all listed on the web site. I won't post c anything about individuals here but feel free to PM, and there are plenty of people here who have met some of them.
I'm not sure if you need to be referred to a specific consultant or just Moorfields External Diseases (or even just MEH).
But your GP ought to be able to do it, and I'd be surprised if you couldn't do it through "Chose and Book" (on line referral).
Have you ever seen referral letters from GPs to hospital consultants? - you could even take along a draft one yourself, with all the names, dates etc for your GP to work from.
Good luck with it - it all sounds very silly!
Rosemary

Graeme Stevenson
Optometrist
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Joined: Wed 03 Dec 2008 11:30 pm
Keratoconus: No, I don't suffer from KC

Re: Advice required please

Postby Graeme Stevenson » Tue 14 Sep 2010 10:22 pm

Hi Kyle

I am sorry to hear of your problems.
However there are a few points which need clarification.
I am not aware that VISION EXPRESS actually do laser surgery?However there may be local arrangementsin different locations.
Corneal topography instruments used prior to any laser surgery assesment, often flag up sub clinical or "forme fruste" Keratoconus which need to be monitored but are not always a huge problem currently.
In summary there are a few points you need to follow up.
Are you happy that the optometrists you have seen are doing all they can for you? have they done what they said they will do?If not seek an alternative Optometrist.this is best done through the KC "friendly" section on this website. How is your current standard of vision?How is it best corrected?Again seek advice from a KC friendly practice. Such consultations may well cost you money although it could be well worth it to get the correct advice and peace of mind. Remember that very few assesments and tests in England are provided by the NHS and of course Optometrists do need to charge accordingly for time.
I hope this is of some help but feel free to ask further questions.

Regards
Graeme

BurnTheAction
Regular contributor
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Posts: 55
Joined: Mon 04 Aug 2008 8:37 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Advice required please

Postby BurnTheAction » Wed 15 Sep 2010 10:39 am

Kyle,

Bit of a sticky one there. You will need to complain to Vision Express, the referal system is bad enough without the opticians messing it up (my moorfields referall took 3 extra months as it got 'lost')

Vision Express should send the referall through to your Dr who will refer you onto Moorfields. It's just the way the system works unfortunately

Should've gone to specsavers!

Kyle
Newbie
Newbie
Posts: 2
Joined: Mon 13 Sep 2010 1:59 pm
Keratoconus: Yes, I have KC
Vision: Spectacles
Location: Abbots Langley

Re: Advice required please

Postby Kyle » Wed 15 Sep 2010 11:46 am

Firstly,

Thank you all for your advice. It's been both informative and reassuring.

Graeme, I've just looked through my original post again and should have put Optical express (Harley Street) not Vision Express. Apologies for any confusion.

Thanks again.

Kyle

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Lynn White
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Location: Leighton Buzzard

Re: Advice required please

Postby Lynn White » Thu 16 Sep 2010 8:16 pm

Hi Kyle,

The early signs of Keratoconus that may bar you from having refractive surgery may not mean that you necessarily will develop full blown keratoconus. It may well be that you can be "managed" by normal High Street Opticians for the rest of your life. Many people who are diagnosed with very early keratoconus never go on to develop it and in fact, in the days before refractive surgery, they may never have even had the keratoconus detected. Your vision may be getting worse due to normal changes in refraction and not necessarily keratoconic changes.

If you get an eye test at a "normal" optician's, they will be able to tell if your vision can be corrected back up to normal with spectacles or contact lenses and to be honest, if you can be then the odds are you will be discharged back from hospital to be managed in the community. I think this is what your GP is wanting to know - can your vision be corrected normally or not?

However, although they can determine whether you can see normally or not, most High Street optometrists do not have a topography machine which is needed to determine whether you have early keratoconus or not. The KC friendly list here does show which ones have these machines.

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

email: lynn.white@lwvc.co.uk

Ladyburd
Contributor
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Posts: 41
Joined: Thu 30 Jul 2009 3:21 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Advice required please

Postby Ladyburd » Sun 26 Sep 2010 10:23 am

Hiya

This sounds so familiar. I had to fight for 2 years to get my GP to refer me to a hospital, then the hospital lost all my records & i was struck of their register.

After many years or numerous phone calls & letters I finally got INTACS surgery & with a hard lens & glasses I have near perfect vision in my affected eye

As per the previous posts, you may be able to get by with just glasses, but please do not give up, keep contacting your GP as they probably won't know what KC is!

Persistence is a virtue & don't take no for an answer

All the best

Claire


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