UK Keratoconus Self-Help and Support Association

Anyone ever heard of or attended the 'corneal outcomes clinic' at Moorfields?

Well I can update you - it doesn't exist.
I found out by accident that I had an appt for this clinic whilst speaking to bookings about another appt.
I'd received no letter or text 2 days before due appt.
So I turn up and are told it was cancelled, not that I received notification. That these appts are made and cancelled just to get notes for outcome data research.
No apology for my wasted time and cab fares.

It might be helpful if patients had some input into outcomes research, because I for one would have a lot to say about my care, treatment, clinic-real life acuity differences, social impact.

I've never heard about 'corneal outcomes clinic' at Moorfields.
Thanks for sharing the info that it doesn't exist.

At Moorfields, in normal times, the 'Corneal outcomes clinic' is intended to provide an independent clinical assessment of your graft. You will normally be seen by another doctor on a clinic that you do not normally attend. It may all seem a bit strange, but it is good clinical practice. The appointments are usually at one-year intervals and repeat for several years. I had a graft over two years ago and have had two such appointments. However, like you, I was scheduled to have one at the end of March, which has just been cancelled. You can guess that with staff being redeployed elsewhere in the NHS these are the sorts of clinics that can afford to be deferred.

I have found it helpful to check when any appointment is being made if you have any others booked as the staff are usually quite helpful at rescheduling them so that you don't need to attend on multiple days.

(I'm guessing, but it sounds like yours was no sooner made, that it was cancelled, and as a letter had not gone out there wasn't apparently a need to send a cancellation. Not very helpful I know.)

Yes a 'sorry we failed to inform you by text and you've had a wasted journey and cab fares' would have been appreciated.
Right now I'd value an independent assessment

There are a couple of ways you can follow this up. This is not unique to Moorfields, there is Pals or the feedback forms that are available at all the clinics.

PALS are pretty lame, notch it up to experience