I’m fed up and I have a headache. Why? Because I’ve just had another semi confrontational telephone conversation with someone, all because I’ve asked for information related to my health in a format which I can read.
This time it was with the National Artificial Eye Service, those lovely people who will be making my shiny new artificial eye which, contrary to the belief of some, won’t be bionic!
This started yesterday afternoon when I was contacted by them to arrange my first appointment. All was going swimmingly until the lady on the phone said they would write to me to confirm my appointment and to send me an information leaflet. I thanked her and asked if she could send the information by Email in order that I can read it. She said no, not until I had filled in a form, so she would send me the letter plus the form. I tried to explain that the form would be no more accessible than the letter but there was nothing else she could do as she is an administrator. Fair enough, so I asked to speak to a manager. At which point she got quite shirty with me and put me through to a manager without even checking there was someone there so I ended up leaving a message on someone’s voice mail.
This morning I had still not received a call back so I called again and this time spoke to a manager. The conversation went round in circles but the points were along these lines:
They have to maintain my confidentiality. Fair enough but by sending me printed material, they have already breached my confidentiality as I have to show it to a third party.
Yes, but I can choose who to share the information with. I do not choose to share it with anyone, blind people do not all have a convenient person waiting in the wings to read to us and I personally do not choose to share with my neighbour who is inclined to gossip, or perhaps my cleaner? She’s a lovely girl but is it really appropriate to ask her to read health information? Maybe I could walk round to my friend’s house? Oh no, she’s on holiday. Fine, so perhaps I could wait until I visit my parents at the end of next week but in the meantime I could miss an appointment which will cost the NHS.
Do you see where this is going?
So, maybe I could have Braille? Yes I could but Email is cheaper, more immediate and doesn’t involve yet another third party.
They have to protect my confidentiality. I think we’ve been here before! They are calling me on a number which has been provided to them by the hospital so they know it’s me.
Someone could open my Email. Possibly, but someone could also open or lose my post.
We’ve reached a bit of a stalemate here so I tried my trump card. My husband uses your service and always receives Emails. So he must have filled in a form. No, he says he hasn’t.
Pounce! This must be investigated! So I’ve possibly just lost my husband his Emails.
Eventually we reached an agreement that the manager would Email me whilst on the call and I would confirm that I had received it, which I did, so she reluctantly agreed that, on this occasion you understand, I could have my private information in a format that I could read.
Apparently no other blind person has had a problem with their systems and they deal with a lot of blind people you know!
So once again I’m seen as being awkward but perhaps maybe I’ve made them think about how to deal with this situation. Or maybe not, I’ve probably just got a black mark on my record.