UK Keratoconus Self-Help and Support Association

I'm not getting letters or texts despite being told I am, then its 'not their responsibility' if I don't receive them, but it would be my responsibility if I'm viewed as a DNA.
They have correct details - check.
I am receiving all other post including from other hospitals - check.
I'm getting really fed up of Moorfields.

That's not good. I think they have had (or having) some hitches since they introduced the central booking system, but there are some clinics they can't book and have to refer them back to the actual clinic. This, compounded with now sending out a letter instead of an appointment card and I think it's all creaking at the seams. The backup used to be the text reminders a week ahead and then a day ahead but mine failed only last week.

If anyone else is having similar problems, let us know here and I'll see what I can find out.

Thanks,

Graham

After the wasted journey for the outcomes clinic with no apology and now the don't give a toss not our responsibility if you don't receive a letter response its starting to grate after not having had the easiest of times. As it is its alarming to be told that an internal referral to a different specialty was marked urgent then that dept received it and marked it routine and there's no timescale at all for when an appt will be sent

Hi,

Sorry to hear you are having a rough time. I think you do need to flag these issues to PALS, I know you're not keen but feedback at the time does can help you and sort out the problem long-term. You're not alone with this and the more of us that push the message the better for all of us.

Thanks Graham I appreciate the acknowledgement

I ‘missed’ an appointment with External Disease clinic a couple of weeks ago. The first I knew about it was a copy letter to my GP telling him they had closed my referral because of DNA. An email, copying in PALS seemed to do the trick, but it doesn’t feel good to complain when my eye sight is in their hands.

Ronnie, thanks for this. It was inevitable there would have been a situation like yours,. pleased it has been sorted promptly.

After seeing your post Ronnie I emailed PALS about no letters, having check up all the time, the wasted clinical outcomes appt, etc.
Within 30 mins I received a call from vitreo-retinal offering me an appt (they didn't refer to PALS). I updated PALS who then responded, no apology for the previous wasted journey, asking me if I wanted feedback from depts, I said no, I just want to receive clinic appt letters.