UK Keratoconus Self-Help and Support Association

Hi all just found this site wish I would have found it months ago great help

I was diagnosed with keraroconus in the left eye 6 months ago

I have been under the nhs since 2009 following a referral from from my opticians as he couldn't improve my vision in the left eye with glasses or contact lenses

I decided to pay to see a private clinic a few months ago and this is when they diagnosed the condition and on Monday I had cross linking surgery in a hope to halt it getting worse

You never know who to trust but the private doctor was shocked the nhs had never picked up this condition and it's been getting worse for the last 5 years

When I challenged the nhs doctor about this he just fobbed me off

Has anyone else had any experience of the nhs

And on the plus side to anyone having cross linking soon my pain has been minimal more of a scratching pain

Hello and welcome to the forum.
I'd guess the vast majority of us here use the NHS for our KC - certainly those of us whose KC has progressed to the point that we need contact lenses. It is unusual for KC not be picked up these days especially with all the new equipment available. But on the whole, the hospitals that deal best with KC are the ones in the larger cities, where they see a lot of KC patients and have built up a lot of expertise. I'm sorry you had a bad experience on the NHS but hopefully the CXL will work well for you and you'll have good vision in spectacles again.

Yeah, hope the CXL works, it is a shame you have had to put up with it so long without treatment. My own experience was a lot better on the NHS at Gartnavel up here in Scotland. I did have one rather dismissive ophthalmologist but the vast majority have been brilliant. I would be out of a job had they not given me the treatment I needed. But experiences differ, I think it comes down to individuals at the end of the day.