UK Keratoconus Self-Help and Support Association

This goes way back to just over a year ago, but it's something I've just been thinking about recently. Basically when I had my first meeting with a consultant about a possible diagnoses of keratoconus (recommended from my optician) she told me, "You have it but it's very mild, just continue wearing your glasses and you'll be fine". Obviously I, as most people on here will also testify for, know that was complete bullshit. I recently had CXL performed on my worst eye, but I get sick to my stomach when I consider that if I was told there was a procedure to stop progression earlier, I could have caught it before it go so bad. In my opinion, that consultant has ruined my life, or at least contributed to something that'll last forever and never be able to be restored. At the very least, I'd like to see her sacked... imo she's not fit for the job, simple as that.

A very simple change to that first meeting would have gone like... "You have it but it's very mild. We want to keep it that way so you should have CXL ASAP to stop any chance of progression and thus saving your eyesight".

I know I'm ranting a bit but I'm just having one of those days where I'm trying to vent my frustration, and it keeps coming back to that first consultant.

So, has anyone else tried or thought about this?

I even started looking at some websites but I don't know, it looks like it could be a scam... something like http://nhsnegligence.co.uk for instance. Thanks for reading anyway!

Was CXL availble when you was diagnosed?

I was told 10 years ago that i had KC

With only a handful of hospitals currently providing CXL on the NHS, I think it would be hard to argue that CXL is standard treatment for KC in the UK at the moment. NICE only finally approved epi off CXL for use in the NHS at the end of September last year and then only once progression is proved by two topographies 6 months apart. And private health insurance companies were refusing to fund it on the grounds that it was 'experimental'. Of course, people have been paying to have it done privately in the UK for 5 years or so, but it's only very slowly becoming an option on the NHS. Progression is also very variable between individuals and people with mild KC may stabilise and never progress to contact lens stage (of course, those people very rarely find their way to forums like this one)! So there is an argument which says why intervene before there is any proof that this individual's KC is going to progress when any surgical intervention, including CXL, can have risks or unwelcome side effects. Equally, there are corneal specialists who argue that the earlier CXL is done the better to avoid people becoming dependent on contact lenses. And maybe in the next few years, that's the argument that will win out. But I don't think that's a view shared by all specialists right now. So personally, I think it would be hard to make a case for negligence stick at this point. In a few years time, it may be a different story. We might not even need forums like this, because all those newly diagnosed will have their KC halted. Though I'm not holding my breath!
Anne

I completely understand how you feel, Oli. I think a lot of people with KC have had similar experiences.

For me, my main gripe would be with opticians rather than hospital consultants. I went to a high-street optician for 2 years, constantly changing glasses for an increased prescription, and was told that there wasn't anything to worry about, even though my astigmatism was going through the roof! Like 99% of people, I'd never heard of keratoconus and relied on the opticians to know what they're doing. It wasn't until 2 years later that they actually thought to tell me that something might be wrong and it could be something called keratoconus. All it would have taken was a simple topography scan at some point during those two years and this could have been identified earlier.

When I had my first hospital appointment I was diagnosed with KC and was given the standard response of 'come back in 6 months and we'll see if it's progressing'. But that 6 months was the difference between seeing clearly with glasses and not seeing clearly with glasses. I had cross-linking done at that point, but really it was too late, and I haven't properly been able to correct my vision since then (either with glasses or contact lenses).

You'd think that in the 21st century, these things wouldn't happen anymore, especially given that we now have the technology to stop keratoconus progressing completely. However, the reality is that in a lot of cases, keratoconus is not treated with the seriousness that it deserves.

kieran19685 wrote:Was CXL availble when you was diagnosed?

I was told 10 years ago that i had KC

Certainly was, was only officially diagnosed last year.

Anne Klepacz wrote:With only a handful of hospitals currently providing CXL on the NHS, I think it would be hard to argue that CXL is standard treatment for KC in the UK at the moment. NICE only finally approved epi off CXL for use in the NHS at the end of September last year and then only once progression is proved by two topographies 6 months apart. And private health insurance companies were refusing to fund it on the grounds that it was 'experimental'. Of course, people have been paying to have it done privately in the UK for 5 years or so, but it's only very slowly becoming an option on the NHS. Progression is also very variable between individuals and people with mild KC may stabilise and never progress to contact lens stage (of course, those people very rarely find their way to forums like this one)! So there is an argument which says why intervene before there is any proof that this individual's KC is going to progress when any surgical intervention, including CXL, can have risks or unwelcome side effects. Equally, there are corneal specialists who argue that the earlier CXL is done the better to avoid people becoming dependent on contact lenses. And maybe in the next few years, that's the argument that will win out. But I don't think that's a view shared by all specialists right now. So personally, I think it would be hard to make a case for negligence stick at this point. In a few years time, it may be a different story. We might not even need forums like this, because all those newly diagnosed will have their KC halted. Though I'm not holding my breath!
Anne

If all the above was explained to me at the beginning that would have been fine. I still had to pay for it privately, but I feel the consultant should have pointed the option out to me at least. It's like someone getting cancer then not telling them there's radiotherapy until over a year later... I think it's just too easy to say 'come back in six months' whereas in reality that could see a massive change in the patient.

James_Ldn wrote:I completely understand how you feel, Oli. I think a lot of people with KC have had similar experiences.

For me, my main gripe would be with opticians rather than hospital consultants. I went to a high-street optician for 2 years, constantly changing glasses for an increased prescription, and was told that there wasn't anything to worry about, even though my astigmatism was going through the roof! Like 99% of people, I'd never heard of keratoconus and relied on the opticians to know what they're doing. It wasn't until 2 years later that they actually thought to tell me that something might be wrong and it could be something called keratoconus. All it would have taken was a simple topography scan at some point during those two years and this could have been identified earlier.

When I had my first hospital appointment I was diagnosed with KC and was given the standard response of 'come back in 6 months and we'll see if it's progressing'. But that 6 months was the difference between seeing clearly with glasses and not seeing clearly with glasses. I had cross-linking done at that point, but really it was too late, and I haven't properly been able to correct my vision since then (either with glasses or contact lenses).

You'd think that in the 21st century, these things wouldn't happen anymore, especially given that we now have the technology to stop keratoconus progressing completely. However, the reality is that in a lot of cases, keratoconus is not treated with the seriousness that it deserves.

I certainly see that in your case, though personally I don't blame my optician that much... he first mentioned the word keratoconus the first time I saw him but he said it was only a possibility. I went back six months later and he said it seems to be getting worse and got me referred to the useless consultant.