To CXL or not to CXL - that is the question

[Libby]

Hi there,
does anyone know if there's any NHS in the Derbyshire area trialing CXL.

Many thanks
Libby

[GarethB]

The nearest one to you that I know of that started a trial ni February 2008 was the Solihul hospital.

[Lizb]

I didnt have much look in finding anywhere near me that does the CXL trials (north west) and didnt really find anywhere else that did them when researching on my own. I think it depends on how much your local hospital knows about CXL and the trials and how much they work for finding/referring you for those trails

I have decided to go private for the treatment (providing i am suitable) and following my internet research and email communication with various clinics i have now decided on the clinic i am going to use - being considerate of my work colleagues and the summer holidays i am going to make an appointment for September time for my consultation.

For me i can afford to go private for this and really dont want to leave my eyesight to chance and possibly getting the treatment (or not) on the NHS if it was approved. My NHS hospital isnt a specialist eye hospital, and dont even do intacs for KC - some doctors there think the only options are contact lenses (outsourced to a private practice) or a graft.

[Libby]

Thanks for your replies guys,

Like most things related to KC there is no easy answer - especially when the hospital you are attending seem totally disinterested in any discussion about CXL.

My daughter was diagnosed 2 years ago but it does seem to be progressively pretty quickly - obviously as a mum I want to try to guide her but im definitely no expert and at the moment feel a little lost as to what to do next. I am thinking due to my lack of confidence in our local hospital our next step would be a referral to a different hospital for a 2nd opinion.

Thanks for listening to my moan.

Libby

[GarethB]

Libby,

There is a West Midlands meeting on Saturday 13 June I think?

Quite often people from quite far afield come (I've known people from Bradford attend), you might be able to get an idea of what other hospitals poeple would recomend.

[Anne Klepacz]

Libby - there's also an East Mids meeting in Leicester on 13th June on the topic of CXL. If you're on our mailing list you should have had a notice about it. Otherwise, e-mail me on anne@keratoconus-group.org.uk and I'll send you the details. NICE, the body that approves new treatments for use on the NHS, will be looking at CXL this summer and there should be a decision before the end of the year. So, depending on what they say, it's possible that CXL will become available in at least some NHS hospitals before too much longer.
Anne