UK Keratoconus Self-Help and Support Association

Hi, My son has just been diagnosed with Keratoconus, so I'm on a steep learning curve.
He is 17 and it was picked up by the optician because his prescription had changed so much in 12 months. We went to see the opthalmologist expecting it to be a routine just in case appointment as the K word hadn't been mentioned. So I was a little thrown when the consultant told us he had the condition. She didn't explain much but told us that collagen cross linking was the best way to stop his eyes deteriorating further, but needed to discover if it was progressive, told us to book an appointment for contact lenses fitting, as he is still wearing glasses (quite successfully) and said she would see him in 9 months , which I managed to negotiate down to 6 months.
Since then I've been finding out about the condition. It's clear from my sons sight tests (that the consultant had) that his sight has deteriorated rapidly in his left eye over the last 12 months, so clearly waiting 6 months is unnacceptable, it's already 3 months since the original sight test that started it. It seems to me that he needs the collagen cross linking procedure urgently.
We went back to the hospital yesterday for the contact lens appointment but did not have any fitted as I was concerned these might actually speed up the eye deterioration and I explained that I felt we needed the cross linking procedure. He told me I had to work through my GP but it wouldn't be funded on the NHS. The GP ( the words chocolate and teapot spring to mind, "i'm not familiar wih that condition , oh, yes I remember , a conical cornea") told me to speak to the consultant. The consultant was on her last day before going on holiday till the 2nd Jan and didn't call back.
I'm in the fortunate position where I can afford to just get this done for him, but I'm conscious it needs to be done quickly, so I'm looking for advise on which doctors in the midlands ideally, do this procedure frequently, with good success rates, and how do I get it organised quickly. I feel really let down by the consultant and wouldn't have much faith in her doing the procedure, even if we could get her to get moving. I really would appreciate any advise on doctors and getting this done

Hi

You are naturally concerned about your son's eyes and the apparent lack of communication between various professionals isn't helping! Although crosslinking has been around for some time there is still some debate on when it should be done. Some experts feel every keratoconic patient should consider it at the time of diagnosis, but the majority view is that there has to be evidence of progression. The evidence is normally based on corneal topography measurements done typically 6 months apart to see if there is any deterioration. I appreciate your concerns that his eyes could change rapidly in six months and you feel it needs to be done ASAP. I note that his prescription has changed a lot which has led to the referral to the hospital in the first place, and this is obviously due to KC but it doesn't necessarily mean it has been progressing since then. Some keratoconic patients are stable for a long time, but, as he is only 17 one would expect some progression before it stabilises. Crosslinking technology has improved during the past few years and further refinements will most probably take place, so there is some merit in not rushing into it if it is stable. However, coming back to your question, Jeremy Prydal at Leicester Royal Infirmary has been doing crosslinking for some years. I am sure there are various other people in Birmingham area like Sunil Shah who can help if you've decided it has to be done now. I have to say it seems odd for the contact lens fitter to ask you to discuss it with your GP, one would expect him to know the consultants in the area who do crosslinking better than your GP! Some NHS funding is available but there is the dreaded "post-code lottery" and the consultant needs to prove to PCT that its progressing to be able to get funding. I hope this helps.

Ali, thank you for your reply. We've had some good news since my original post. We had another sight test carried out which showed that my sons eyesight has not deteriorated since the test 3 months ago, although, clearly this doesn't mean his sight has stabilised.
My view is still that cxl is still the way forward, to ensure his sight doesn't deteriorate further, so your information is very helpful.

Hi

Welcome to the forum
First thing is don't panic, and the Second thing "DONT PANIC"

Ali has given you great advice and this appear to be backed up by your second eye test.
I was diagnosed about a year older than your son (About 18 at the time and I'm now nudging 52). Since then I have seen all sorts of "specialists" some, in my opinion, were excellent and others to put it bluntly were worse than hopeless! (My own view and please take it as such)
One of the most frightening things was when NHS were trying to register me partially blind and I never saw the same consultant twice etc. but I then went on holiday to Zimbabwe of all places and out there I visited an Optom and he said no way would I ever get contacts to be comfortable and prescribed me glasses. Well 18 years on and I still wear his prescription making allowances for "old age" and natural aging process on my eyes.
As an aside when I returned to the UK I had my next NHS visit and read the "nade in Hong Kong " at the bottom of the eye chart and the senior consultant could not figure out how the Zimbabwe Optom had got to the prescription! (So some good some bad as I said before!!!)

I have never had any Cross linking - in fact back then I don't think it had been invented!

Now a few thigs that may help - perhaps !quack" cures but worth trying. tell him not to rub his eyes - rubbing will speed any progression. (Perhaps stop / reduce the video games as players end up not blinking and the eye gets dry and itchy!) I also do an exercise where I focus close (about 12 inches from my nose) the far - bottom of garden, then nose then garden - keeps everything working as it should

If the fist consultant does not answer your questions - move on and try another. And I believe some Crosslinking is now available on NHS - perhaps only at Moorfields but again worth asking for a referral - a train ticket is a lot less than a private operation!

Ian

Peter,

Hello, welcome.

I echo the words of Ian, don't panic! First things first, this is all new information, what I would suggest is you take the info in and do some research yourself on both Keratoconus and Cross Linking to get started.

Diagnosis of KC can take some time, it can be distressing for everyone involved and with things like the internet you can easily find reports of horror stories before you find success stories, so please remind yourself this before you panic! (of course I am biased but you have come to the right place)

I had cross linking on my left eye back in September at Moorfields Private Hospital in London. I was diagnosed in my mid twenties and had stable vision for 4/5 years. When my optician couldn't correct my vision back in 2010 I was referred back to my local eye hospital in Bristol. I was monitored for 18 months (every 6 months) before my consultant advised that I should consider cross linking. When he did, I was fortunate enough to have parents that could help fund and we did our research and went for it. In deciding on where to go, I went to what I considered to be the best people in the country. Moorfields is a centre of excellence in the UK. (and has recently announced that they are offering crosslinking on the NHS for Moorfields Patients)

Now you have two other places in the UK that are currently offering it on the NHS Manchester and Liverpool I believe - we can check this if you like, to get referred to an NHS provider for crosslinking you will need to go via your GP and request it be put to the local PCT board. This can be a lengthy process, and isn't a guarantee. I made the decision that it was too much hassle and stress to wait and go through it, so opted for Private options. So with this in mind, I would consider not just local providers but given its not widely on the NHS yet you want to research who has the most experience in this, who has extensive background in treating KC patients, as it's private you get to shop around, and you should go for the best, not just the nearest or cheapest. (This is only my personal opinion of course) Vincenzo Maurino did my cross linking and was professional and I was happy with the service. I have my 6 month check up back at my NHS consultants in Jan so I don't know yet whether its worked, so fingers crossed!

In terms of your concern over whether lenses will speed up the progress of the condition, I'm not sure this can be proven. I was diagnosed in 2005 and have successfully been prescribed glasses since. I see hanging onto my glasses as proof that it can be managed at early stages and hopefully a sign that I'm not at the lens stage yet! If you're concerned you need to explore what vision can be achieved with the glasses, we are awkward buggers to prescribe glasses for with our quirky corneas but if you see an experienced optom at your local eye clinic they will do a good job. If your son has been prescribed glasses and is happy with the vision then there is no need to push any further with the lenses at this stage - one step at a time!

If you let me have your e mail I can send you the info I was sent by Moorfields if it helps?

I haven't gone on about my crosslinking experience, as I have written a blog on my KC and having treatments etc, so you may want to have a read through my journey there. http://harringtonbear.wordpress.com/

If you have any more questions, make sure you throw them around on the forum, I myself have found some amazing support on here and I hope you do too.

Happy New Year!

Claire

I'm not expert (so take everything with a large dose of salt, I might be reading it wrongly) but I got a little update on the NHS guidance on CXL from the NICE website recently (updated on the 5th of Dec 2012, I added the formatting).

Photochemical corneal cross linkage using riboflavin and ultraviolet A for keratoconus
The National Institute for Health and Clinical Excellence (NICE) issued full guidance to the NHS in England, Wales, Scotland and Northern Ireland on hotochemical corneal collagen cross-linkage using riboflavin and ultraviolet A for keratoconus in December 2009.

NICE has reviewed this guidance and is reassessing the procedure. New guidance will be published as a result. Until the new guidance is published the NHS should continue to follow the recommendations in the guidance below.

The Interventional Procedures Advisory Committee (IPAC) will consider this procedure review and NICE will issue an interventional procedures consultation document about its safety and efficacy for 4 weeks’ public consultation. IPAC will then review the consultation document in the light of comments received and produce a final interventional procedures document, which will be considered by NICE before guidance is issued to the NHS in England, Wales, Scotland and Northern Ireland.
If you wish to be updated about any developments with this procedure, you can express an interest here

http://guidance.nice.org.uk/IPG320

To me that looks like the reviewed guidance is at stage 4 on this:
http://www.nice.org.uk/aboutnice/howwework/developingniceinterventionalprocedures/developing_nice_interventional_procedures.jsp

In cost benefit terms I'd recon that CXL would be a great money saver really for the NHS. You wouldn't need many consultations and specialist lenses (one of mine was £350) to weigh against the <£2k CXL procedure over a lifetime. So we hopefully (to my naive and completely layman mind) might be getting closer to full NHS cover for this.

Let's hope so, Andy, and many thanks for posting this. We'll post something on the forum just as soon as we hear that the consultation period for the new guidance is open. As the NICE website says, there is only 4 weeks for people to make comments from the start of the consultation, so I hope lots of forum members (especially those with experience of CXL) will take part. And if you register an interest on
http://guidance.nice.org.uk/IPG320 that should mean you'll get a personal e-mail to let you know when the consultation starts.
Fingers crossed!
Anne