UK Keratoconus Self-Help and Support Association

Sorry I don't come on here much but I have had other stuff happen in my life which I wont dwell on
Ok so several years ago I had a cataract removed in my left eye. No IOL was inserted as the consultant didn't know what strength to use in spite of many many tests and appointments. I was given this informational an hour prior to the op. Lens fitting post op was hell.
Now it would appear that some blurring has recurred and I was referred to a consultant in the same department as my usual KC treatment. I had that classic letter Mr X or one of his team and I got....one of his team. I have since contacted the lady who referred my and here is my email to her (she is dealing with it but I feel...fractured. Bear in mind this is the same hospital and she works 100 yards away but was on holiday on my appointment day.

My Appointment with Mr R
I was quite anxious as I hadn't realised I would have to take my lenses out and was going to sit without lenses in a waiting room for over an hour. Luckily for me my partner had stayed with me.
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> I wasnt feeling that confident with the whole experience from the start when the nurse began by asking if I wore glasses etc I can't believe there wasn't a basic form saying KC patient, contact lens wearer, vision with lenses in etc. I had eye tests without lenses was this correct?
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> Finally I was seen after several hours literally the last person in the waiting room. The gentleman I saw was tall and very foreign. He introduced himself and his accent was so strong I couldn't really understand. I think he may have been East European.
> I was already feeling anxious as I don't cope well in strange places with no lenses. He didn't help matters when he couldn't understand what the notes meant. A lot of his questions had to be repeated due to his accent.
> I know he was out of his depth because he left the room to get help.
> A second gentleman came in and looked briefly at the notes and said something about + or - 1 being with a lens being in the eye.
> He then scribbled something down on my notes and said something about still needing a lens if I had an IOL.
> He asked if I felt my vision wasn't as good as when I had the cataract surgery. This was difficult to quantify as it took so long to get me a wearable lens I can't remember.
> I felt it probably wasn't so they are going to make an appointment for laser treatment and he advised it would make an IOL implant later difficult.
> I was really unnerved so I didn't ask enough questions they all came to me when I got home. I had thought I was seeing a Mr R but have no idea who I saw.
> No explanation was given of how much cloudiness there is, how much improvement they think it would make or what the side effects of laser treatment would be.
> I don't know if an IOL implant would make lens fitting easier or would give me better vision or if the laser treatment benefits outweigh the risks and how high the risks are or who would perform it.
> I am now left wishing I hadn't gone or had made myself better briefed with questions to ask

This sounds like an awful experience, Anna. I do hope you get a satisfactory reply to your complaint. Were you told what the purpose of the laser treatment is? I don't know if this is standard in all hospitals, but I now get a letter each time I'm seen for a medical (as opposed to contact lens) appointment which summarises what happened on that occasion and what the recommendations were (the same letter goes to my GP). If you haven't had a letter, it might be worth checking whether your GP has so that you can go through it and ask all the necessary questions.
I think in your shoes, I wouldn't be signing a consent form for any treatment until I'd had the chance to ask about all the pros and cons. Though I know that's often easier to say than do, and especially when you're sitting there completely defenceless with no contact lenses in!
Do let us know what happens.
Anne