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PCR tests failing - no communication from hospital

Hi all,
Just feel I need to vent some anger and fustration !!!

Quick backround - been diagnosed for 3 and a half years, and stable at around 0.05%. I have 3 monthly out-patient appointments at Hartlepool and a annual appointment at Newcastle with Dr Stephen O'Brien. I have my bloods taken at Hartlepool and they are sent to Newcastle for the PCR test
I had a result in June 2008 which came back ok at 0.02. The previous one had come back as ' test faliure '. Now my last 2 PCR's have come back as 'test faliure' !!. The consultant at Hartlepool couldn't even understand the reason given on the report. I have now had no PCR result since June 2008, and given that I have just had another sample sent, this will be a 10 month gap ( if this one works !! ).
I understand that the PCR test is complex. As a laboratory technician I have actually done the test myself testing foods. However I feel that the lack of comunication by both Newcastle and Hartlepool hospitals is appalling. Surely if the test is recorded as 'test faliure' it should automatically trigger a letter or phone call to the patient in order for an immediate re-test to be carried out, instead of me attending the following out-patient appointment, 3 months later to be told the test did'nt work. Out of the last 4 PCR's that have been carried out, three have failed, a 75% faliure rate !!.
I have an appointment with the Patient Advice and Liason service at Hartlepool and I am determined to get the reporting and communication system changed.
Apologies for my long rant and hope you are all well,

Craig.

Dear Craig,
I understand your frustration. CML patients in MR rely on their pcr tests for a sense of security in the knowledge that their disease is under control and response to therapy is optimal.
Blood samples sent through the 'post' (courier) are more likely to be subject to 'outside forces' which could contaminate the sample. My doctor told me that even room temperature can effect the result and if the sample is not tested within 72 hours it will fail.
It might also be that the sample is not properly stored immediately after it is taken... and this would be something your local hospital should check.
However this does not help you with your obvious disappointment and frustration. I am fortunate to have my pcr tests done at the same hospital that takes the sample, so they have a system in place that makes test failure less likely (but not unknown)
I do hope you are able to have some effect on the present system of communication between both centres.

Sandy

Aust.

Craig

At times I had this experience, however unlike yourself
my medico nurses have contacted me and asked me to have the test done again - and sent out a new pathology form. Then just arranged for another lab day.

My tests failed - not because the test failed it was because
I was having the blood taken on a Friday morning, thinking
that if bloods had to be at the lab within 2 hours then there would be plenty of time to do the test and forward the results. Wrong !! At times, lab could not do my blood work because they were flat out and by the time they did the work the blood was not good for testing PCR levels - OK for full bloods though.

Now have bloods taken first thing on a Monday with a copy to patient so the labs send me a copy also.

May I ask why you did not phone up the specialist or Lab to enquire where your results were or what they were - A 10 month gap is quite a length of time. Even the full bloods is going to advise of general chemistry of the bloods and if you require additional treatment for hb, supplements etc etc.

Glad you are sorting everything out.

Good to vent

Sue

Hi Sue, and thanks for your reply, the reason I don't phone up to get the results is that I find it too stressful to make the call to be honest. I used to phone up, but I found that the result was never ready and I ended up having to make three or four phone calls before getting the result. So I decided to 'put off' getting the result by waiting until the following outpatient appointment.
My full bloods are carried out at my local hospital and these are always available at the time of my appointment.

Craig A

Hi Craig,

although I am treated at West Cumberland hospital in Cumbria my blood samples also go to Newcastle for pcr testing. Out of the last 4 tests 2 have failed. I share your frustration but I believe there is some encouraging news. My consultant told me last week (after informing me of the failure of my last test) that tests would in future be carried out at a genetics research facility elsewhere in Newcastle and that the current lab will no longer do them. His experience of this new lab is apparently very favourable. Hopefully failed tests could in future be much less of a problem.
Regards,
Colin.

Thanks Colin, I know of the centre which you refer to, It's the Centre for Life and they are a world leader in genetic research. Hopefully our issues can be resolved !!

Craig A