Hi again, moonandstars,
I know the feeling! My local pd nurse is very good IF one can get hold of her. Part time job. If I phone, I have to leave a message, she never answers a call, she calls back, supposedly within 2 days, but will only leave a message if one has a personalised answer phone which I don't. I have seen her only once, last autumn, and have another appointment this coming autumn. Her role includes giving advice about meds etc., but she is just too busy to be of use at the time you need it.
But, my consultant, who was initially rather unhelpful, has recently started to take more interest. I saw him once at very beginning of this horrible journey, then next time I had an appointment I only saw his registrar who admitted he didn't know much about PD. The following time it was a different registrar who said on concluding our meeting, that he didn't expect to see me again as he was applying for another post! I then had my one and only appointment with the PD nurse and mentioned the ineffectual registrars. She must have pulled a string somewhere as since then I have been seen by my actual consultant twice! He even organised a DAT scan, after saying at first I could not have one for about 2 years, it was all "wait and see" stuff! And I have his secretary's email address - this is like gold dust - she gives him my message and replies to me so I am not left wondering. So, communication has improved - just wish I had too!