Table 2.

Patients experience of information provision

Regarding written information …
Each time he goes in he gets the same book.
I have to work with this all the time, every night, put in the reading, put in my dosage. I am juggling it around a bit and it is very hard to remember all the things, so I enter it in pencil. I do it as soon as I have left the doctor and as I take them I ink in the figure of the dosage and then he also has a record. I don’t have to tell him, I just give it to him and it makes life a lot easier.
The specialist didn’t give me this [book] … he said that you could get this book and I had to go to two pharmacists to get one …I think it could be better communication … they just gave me the book.

Regarding education in the hospital…
The pharmacist came around and explained it all to me in every detail and gave me a book of what I should eat and what I shouldn’t eat
There was a team of about five doctors … all around the bed and they all talked to me. No criticism of the doctors but not much explanation just a sort of a wry comment, that they use it for rat poison, it was not very reassuring.
I didn’t get anything … only very sketchy in [hospital]… I haven’t received anything extra at all

Regarding education in the community …
[The chemist] did explain … not to take it with aspirin and things like that … just take it with water.
I go to a big pharmacy in Chatswood and you hand the script over and there are about six pharmacists all rushing around like mad things behind the counter … You’ve got about five people lining up to get served … there is a big sign … ‘Talk to your pharmacist’ … I don’t know that that is working all that well … there is a need for some sort of central place.
The doctor … looked it up on the computer and he said, “deadly, don’t take any more [tramadol]”… and yet I had asked the pharmacist … she said well there is nothing on our computer other than to just watch for any black spots you have come up on you … I have got to go back from him and feed her the information that she wasn’t aware of.
I was disappointed that there wasn’t much being done, just a label was just being sent off … I see my GP but he doesn’t seem to offer much advice or anything.