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Not sure if I have just been fobbed off by my local hospital.  I usually ring up for my PCR results three weeks after they are done, and have always been given the result over the phone.  The last one was 0.01 and my bloods are sent to Sheffield.  This morning I was not given a result, and was told that the way results are reported has changed, and that it is no longer given as a "ratio".  When I asked for the new result, I was told there was no point in giving it to me as I would not understand it (28 years in healthcare with a clinical background!).  Was told the consultant had seen it, and it "equated" to what it was before "just about", and I didn't need to have an earlier appointment.  My next appointment is in April.  Anyone know if there has been a change to reporting?

 

After a few phone calls, it seems there is no change in reporting.  Nurse has now rung me back and given me my results.  Why or why do they treat patients like bloody idiots?  All sorted now.

 

Hi, and many thanks for sharing this. I am amazed that someone would try to 'fob you off' with such a statement as 'you wouldn't understand the results'!.... and that this reflected a change in their reporting method!! I am always concerned that it only takes one person to set us back to a time that we have all been fighting so hard to move forward from. CML patients as a whole are very well educated (mainly by themselves) in the importance of molecular monitoring and the results of our qPCR tests. 

Fortunately you persisted and now have your results. If I were in your situation at your next appointment I would take (polite) steps to 'educate' the team at your clinic about the rise of the 'self educated CML patient'.  We have worked hard and come too far over the last decade to put up with such utter nonsense. 

Sandy

My consultant asked me to talk to his genetics students (both BSc and MSc students) so they know

1) what they are testing in the lab belongs to an actual person and the importance of accurate results delivered on time  and

2) how much we CMLers know about molecular responses.

I've done the first group of 50 students ( with my consultant) and meet the Masters group on March 3rd. An interesting experience.

 

Maybe more teaching hospitals should involve patients?

Best

Chrissie