UK Keratoconus Self-Help and Support Association

Hello, My daughter has been diagnosed with Keratoconus in both eyes. One is apparently too bad for an operation but the other was due to be operated on today - May 15th. The consultant told us she needs to be operated on asap. Unfortunately, the Operation was cancelled without us being informed so we had a long travel to the hospital in vain. I am hoping to find out the following:

Which NHS hospitals offer the treatment?
Which hospitals offer private treatment?
How much (on average) is private treatment?
How quickly does/can the condition deteriorate?
If we find we are too late for this option to succeed, what else is open to us?

Sorry for a long list. I should add, my daughter is 34. She has Downs Syndrome with autistic tendencies, she has bi-lateral hearing loss and wears a BAHA (bone anchored hearing aid that transmits sound through bone conduction). Bearing all this in mind, it is vital to me that her sight is as good as we can keep it. I would appreciate any help.
Thank you.

Hello Vivien and welcome. How very frustrating for both of you. Can you tell us what operation your daughter was due to have? Was it collagen crosslinking (CXL) or a corneal transplant?
And whereabouts in the country are you?

Hello Anne

Ellie was due to have CXL at Bristol Eye Hospital. I live in East Devon, my daughter Ellie lives in supported living near Okehampton, Mid Devon. Is a corneal transplant another option?

As you probably know, the idea of CXL is to stop keratoconus progressing. It can't be done if the cornea is too thin, so that's probably why you were told it couldn't be done in your daughter's other eye. A corneal transplant is a last resort for KC, involves much more invasive surgery and needs a lot of follow up care. It's done when specialised contact lenses can no longer correct the vision or sometimes if contact lenses can't be tolerated.
Have you been given another date for the CXL to be done? How quickly the condition progresses varies a lot between different people but the changes are usually gradual over a number of months or even over a number of years. And for some people, it will eventually stabilise. With CXL, the issue is the thickness of the cornea and doing it before that falls below 380 - 400 microns
As far as I know, Devon hasn't managed to get funding to provide CXL on the NHS, though they've certainly tried in the past. It is available privately in Plymouth. I don't know about Exeter? Bristol is the nearest that offers it on the NHS. I think the next nearest would be Southampton - CXL is still a postcode lottery and the south west isn't very well provided for.
The cost of private CXL is around 2K.
If you'd like our information booklet about keratoconus, do e-mail your postal address to anne@keratoconus-group.org.uk You'll also find useful information about keratoconus in people with learning disabilities on the Seeability website www.seeability.org if you search on keratoconus.

Thank you so much Anne. The hospital have given us another date but it is a month away, so I suppose that is going to be the best we can get. Thanks for the seeabilitynlink. Regards, Viv

It would still be useful to be able to see a comprehensive list of all the NHS hospitals that offer this surgery.

I agree - it would be great to have such a list. But as far as I know, it doesn't exist. A few years ago, when the KC Group was involved with some corneal consultants in trying to get CXL more widely available, a survey was carried out through the Royal College of Ophthalmologists. But around a quarter of corneal surgeons did not respond to the survey. And the list that was compiled then is now out of date. I have in the past asked members to let us know where they have CXL done, but again haven't had much response. So the best we can do at the moment is reply to queries on an adhoc basis but with the caveat that we don't have the full information.
All the best for your daughter's new date.