Table 3.

Patients’ expressed needs for information

Personally prefer that I read the book first and then come back and say ‘I am not sure about this or that, could you explain this to me’.

I found it very difficult to sit on the other side of [the cardiologist’s] desk and try and make notes of what he was saying. Now to him… it is a routine thing that he says … for me it is the first time I heard this … I don’t think it should be left verbally … [and the doctor] follows this up with again verbal advice.

I could have done with a bit more [information] … another microgram or milligram or whatever it is … I just don’t know what is too much or too little and I am not clear on INR. I wouldn’t mind knowing a bit about that because I am the one who is taking it. That is not a criticism, just a plea for more background.

I did have lots of information, as much as I needed, but when I got home, and practised I found… [that] every two weeks I would give blood and it would alter. I just wondered, what is the good of it? …I must have warfarin and they were saying to prevent stroke … just want to be sure that I am doing the right thing so I won’t get a stroke.

There is a diabetes educator … who fills me in [on diabetes management] and gives me all the reasoning and good motivation to keep at it … I wouldn’t mind there being … a warfarin blood thinning educator … that you could phone or go to …because if I’ve got any doubts like that I might stop it entirely.

The local doctor is great for prescribing the next amount to take according to the INR … but I just feel that I am a bit alone, it is a bit of a journey travelling solo. Well either the limitations of time to do that or even the limitation of expertise I think … So really the scope is something to be set up, educating bureau or forum or something.