Things don't get better do they? You'd think it would be harder to lose us now, but no.
In the days before computers a hospital lost my entire file. Years of opthamology clinic visits. And it turned out my GP didn't even know the diagnosis or that I'd had annual clinic appointments for 8 years.
I'd left school, then moved house, so I'd called them to ask if I could get a new consultant, if not could they change my appointment to a later one.
They said he'd prefer to see me, so promised to write to me with a new appointment.
Nothing happened.
I called them back.
And there was no record I'd ever been.
Some years later I attempted to explain this to my GP and asked for a referral.
The clinic, or the GP, thought I'd had a squint, which I didn't, so they ignored my explanation and discharged me.
I've never tried again.
In my mid 30s I found a brilliant optician who did loads of (free) tests and talked me through the diagnosis and what it meant. So I now knew its name.