To Worry or Not to Worry?....

Most of you here in Ireland must be pondering the recent report regarding the faulty archived Radiology systems failure. We know as in my case .CA 125 marker is not a reliable tool for diagnosis. So if scan results have been archived incorrectly since 2011 I have to ask the question where does this leave me and others whose hospital used the NIMIS system. Now it seems that Clinical assessment also comes into play in a recurrence. Wiĺl all this be swept under the carpet? It is not good enough. Some patients may be recalled for reviews. It's like a lottery to be honest, it is time the Hospitals and their Managers have accountability for the errors in the system, more so it is time these people acknowledge that file 123456 represents a human being with fears and feelings and is not just a code in their failed reports system. Where do we go from here now?

[kittie]

Once again we turn on the radio and hear of another HSE glitch. I don't know where we stand Suzuki with this latest cock up. We don't have enough to worry about waiting for reviews and CT scan results we now have an extra worry, and won't even know if we are getting the right results. Our lives are in their hands.

[Naimish]

Dear Joan, this is gross, to say the least. But, don't you get a copy of your USG or CT Scan, Pet CT ? Or is it that they don't print images? This is one of the problems of 100% digitisation. Too much dependence on machines and less on humans. Gauri is asymptomatic and her annual Pet CT picked up the errant malady in her liver . This, combined with a CA125 of 48, she will be surgically operated once again on 9th. Having opened up, the onco surgeon wants to see everything inside.

Naimish

[Hidden in reply to Naimish]

No Naimish we don't get a copy unless we go private but then only radiologycan read the CD. It is another piece of mayhem in the Health System here. I had c.f. scan before glitch discovered and many more from 2011 to 2016 when suddenly my scans were deferred for some reason. Maybe they knew system wrongback even then???

[annieH1]

Dear Joan,it's horrific.Could it mean we didn't have cancer in the 1st place or does it mean we have it but the reports are saying otherwise.I did see the comment from CUH and the Mercy stating they don't use that system and everything is A O.K!

[Hidden]

I can't answer that. First off the A and E Consultant said diagnosis are made by a MDT with Scans and other tests like bloods etc but now some other Prof in ACC said its not that simple. Way I take it is that any results sent to GPS are accurate but there is a possibility of results archived for collection are incorrect. I think South changed to that system when they got a new scanner some years ago. There was as notice to that effect in radiology waiting room. But we are in good hands with an oncologist who does his best so holding on to that thought. But warned Noel Clinic on 14th could be Chocabloc and be prepared for delays

[IrishMollyO]

Hi Joan

I'm glad you have started the conversation and thank you for posting. I'm sure anyone who has had a scan of any kind over the past 6 years is worried and rightly so. It is now old news and today's newspapers have dropped the subject already .

It's ironic for me that this glitch started in 2011 the very year I was diagnosed . There is very little information being released. I gather that the error happens when the scan is downloaded to this " state of the art " computer records system. The symbol for ' less than ' < never came across on the records . So if one had let us say a tumour that was less than 20cm this record was saying it was 20cm. Is that how you understand it ? In any case it causes anxiety . I certainly would like to think that every single scan would be reviewed but that is not going to happen according to the HSE . They will do random checks but then nobody will know if their scans have been reviewed . Or will they ?

How do we clear the doubts in our minds ? Do we ring our individual hospitals ? Naimish was surprised that some of us do not have copies of our scans. I have never been offered a copy but maybe I should have asked and insisted. It may not apply to me as I had no large tumours but I had thickening in my omentum etc so that would have a measurement.

Anyway Joan I hope there are some answers soon on the whole subject and if you hear of any number we should ring let us know . Take care

XXX

[Hidden]

Hi Molly O The Examiner does mention the disaster today. Like you I feel that things are played down. As I said our Oncs go by Clinical assessment and blood markers. My markers are not reliable. Clinical assessment well tummy exam and the way you are feeling on the day. I am most likely to say fine even if I am not. I have brought it to the attention of the NCCP but person in charge is on holidays. There is also a patient focus group which I will email later. I don't think it should disappear from view. So have my routine appt this day week and result of c.f. scans archived in June. So I am not confident at all in the system to be honest.