"Feel a little slidelined"

Anything else?

I have Keratoconus, where my cornea is essentially softer than it should be. My cornea should look like the rounded end of an egg, but because it's softer than it should be, it bulges outwards and looks more like the pointy end of an egg instead. This means light is sent all over my light receptors rather than being nicely focused on them, so my vision is very blurry and the condition has progressed to the point where it can no longer be treated with soft contacts/glasses. I was admitted to Hospital in mid 2009 and have been an outpatient ever since. I've seen numerous Ophthalmologists, but unfortunately have never seen the same Doctor more than twice. Considering my eyes are turning into cones, I've only ever had one topology, so I've never really been able to see how my condition is progressing. I was promised a second topology, but I never got one. It only takes about 5 minutes sat at a small machine which is on a wheeled trolley. It could be done from anywhere with a plug socket really. The information I've gotten about my condition has been minimal, I've actually gotten more information from the internet via Keratoconus support groups and websites than I did from my appointments, however I do not hold this against the Hospital entirely, I can appreciate each department is very busy, especially the Eye Care Centre and I have been somewhat content with obtaining information about what to expect over the next few years and how I can deal with bad/dry eye days myself. The Doctors are well mannered and polite, although I was especially surprised to find that in during of my recurring appointments which the hospital arranges, one Doctor I was sent to see actually asked me why I was there, as if I'd asked for the appointment to be arranged. I'm also sadly becoming accustom to the hasty appointments and repetitive outcomes. After waiting anywhere between one to three hours, my appointments only last about 10 minutes and usually end with "It's a degenerative disease, there are currently no effective treatments, surgery is too risky, we'll see you again in 6 to 12 months". I was however pleased with the contact lense consultant I saw about RGP and hybrid contact lenses. She was lovely and showed real empathy for me which made me feel much better. Recently I've hit some problems with appointments. I was referred back to the contract lense department by an Opthamologist, to address some discomfort I feel when wearing the hybrid lenses I've been issued. I received a phone call one day before my scheduled appointment to say that it had been cancelled due to a staff member going home ill. I was OK with this, but it's now been three to four months since I last heard from the Hospital and I'm getting frustrated. Overall, this is a mixed review. I accept there's not much than can be done except monitoring my incurable condition, but I feel a lot of things could have been done better to help me cope with the fact I have it.