UK Keratoconus Self-Help and Support Association

Hello there,

After taking my 19 year old daughter to our local hospital in Derbyshire I feel that we definitely need move hospitals so that she can get the best treatment available. If I can explain - each time we visit the local hospital you get the distinct impression that they are not interested. Our questions are not answered and we then get the standard response of "we'll see you again in 6 months". When I ask if the KC is progressing you just get a shrug of the shoulders and the response of "its difficult to say". My daughter has only ever had one topography when she was first diagnosed, surely if they did another then they could tell us if things were progressing. Obviously as any parent would I want the best for my child. My worry is that if we stay at this hospital then any hope of having CXL may be missed if the cornea becomes too thin.

This is where you guys come in - Are any of you being seen at a hospital around Derbyshire - we dont mind travelling a good distance - just need to get referred to a hospital who are willing to show some interest and answer our questions.

Thanks
Libby

Libby,

Unsure about other hospitals in Derbyshire but I know Leicester Hospital get good reports as does the Birmingham Eye Unit.

I would rate my hospital in Coventry as first rate, I rarely see the consultant but the optoms fitting my lenses are very good at answering any of my questions and doing topographies if I request it.

hope this helps.

Hi,.
What part of Derbyshire are you in?
I grew up, and was diagnosed in, what was Cheshire when I was young, became part of Merseyside and is now just Wirral Borough. The eye dept I went to is now at Arrowe Park (Clatterbridge in my day). I think AP has consolidated the eye service. In my day, they contracted out contact lens fitting to (a) High Street optician practice(s) but I hear rumours of an in-house AP CL dept now.
There's also St Paul's in Liverpool. Widely known, but I knew some of the chaplains better than the doctors. Or patients.
If ou press your GP for a referral to the experts, your GP may have a better local knowledge. Or may take the "easy" way out and send you down to Moorfields. Pleanty of people there who know about KC, but you may not fancy either the travelling or the long waits.
Good luck.
BTW, the only person who's ever tried to do a topography on my eyes (at least, anything like a modern topography) was someone doing a research project for which I went to be a guinea pig. Noever had one done at a hospital in 30-something years. DUnno why not, but as I found the light painfully bright on that one occasion, I can't say I'm sorry if the people who've looked atmy eyes reckon they can tell what they need to know without one.
Rosmeary