UK Keratoconus Self-Help and Support Association

Hi

My name is John and I have just joined this forum. Sorry if this has been asked before.

I am now 38, was told I had KC as a teenager by an optometrist who must be retired or dead by now and anyway was based at the other end of the country from where I now live. I did nothing about it as it only affects my left eye and my right is perfect. The condition seemed to have stabilized, however in the last couple of years I have found it gradually more difficult to deal with paperwork or operate a computer and in particular I find I have to shut my left eye to read some of the paperwork we use at work (driving job).

My question is, do I need to see my GP first or an optometrist first to get this assessed? It is not easy to get time off work so I would rather go to the correct person. When I looked at this site a few months ago there was a list of KC friendly optometrists but this page no longer seems to display any content. I do not really have much idea of how the NHS works in relation to these problems.

Many thanks

John

Hi John and welcome to the forum,
Apologies for the lack of the optometrist page - it disappeared when the site went down a few months ago, and I know our webmaster is trying to reinstate it. It sounds as though your KC in the affected eye has been slowly progressing over the years. If it's progressed beyond the point where glasses would give you adequate vision and you need contact lenses, then you're better going to your GP and asking for a referral to a hospital eye clinic (preferably one of the big city ones where they see a lot of KC and have their own contact lens department). If you do need contact lenses, you'd then get them at the NHS rate of £55 per lens. The cost is higher with a High Street optician and although the whole process is a lot quicker, you would need to be sure you're seeing someone who is expert at fitting lenses for KC. I hope that helps.
Anne

Hello John
There was a time in Scotland when GP's made referrals to ophthalmologists, and I think that this route is probably still open. That said, in this jurisdiction, optometrists make faster and more direct referrals to ophthalmology departments in NHS hospitals.
I am afraid I do not know whether this system applies in all parts of the UK, but I am sure that someone will be along in a moment who can either confirm or correct what I say. In the meantime, welcome to the forum.

Hi

Many thanks for these replies. I probably should have said I am in England.

I will book to see my GP then. I'm not sure if it's progressing or not - the main way I can see it (other than it being very difficult to focus with the left eye) is by looking at something high contrast like the moon on a dark night - with the left eye it looks like it is smeared diagonally and I cannot focus properly and that problem doesn't seem to have changed in the last 20 years. However I do seem to be making the text on my computer screen bigger than I used to.

Thanks again

John

Don't know if this helps, but it's fresh in my mind as I was first referred last summer.

It was my optician who wrote me a referral letter, which I then took to the reception of my GP to be put through to the hospital. But I don't know whether this is the norm.

Hi John,

If you've not had an eye test for a couple of years or more it may be worth booking an eye test at the opticians as most people who go to hospitals for their contact lenses are reminded to go to the High Street for a full eye test. Also it may not be KC that is causing the problem. It could be simply that you need reading glasses although this would be more likely if you were in your forties.

Lia

My path into the NHS regarding my keratoconus was via my opticians.

Thanks for putting me right, everybody. I'm way behind the times!
Anne

Hi,

My name is Chika and I have just joined this forum.

I have been recently diagnosed with Keratoconus and my next appointment is in June. After this appontment, my doctor would decid if I need to have the cross linkage treatment depending on the condition has worsened.

My sight have gotten really blurry and I am quite sensitive to light. also have my driving test soon and I am a bit more nervous about driving than I was before being diagnosed with KC.

Any advice?

Hi Chika,

Welcome to the forum.

It's good to hear that cross linking is being considered if your KC is getting worse as not all hospitals are offering the treatment,

Have you been prescribed contact lenses? Many people with KC find that they give better vision than glasses. There are lots of different designs of contact lenses for keratoconus so it can take a few appointments to find the most suitable ones.

Lia