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PSA test result’s withheld

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User
Posted 29 Mar 2024 at 10:01

I have had several blood tests recently which have included PSA. Our local hospital produces the results very quickly, usually within a couple of hours. The results are visible on my *Patient Knows Best* account, however on each occasion it is only the PSA results that are being withheld for a period of four weeks. In theory, I can get the PSA result from the whoever commissioned the test.


What I don’t understand is why the results are being withheld from me and what mechanism within the NHS reporting software is deciding to stop me knowing these specific results without consulting a medical institution. Having just had my second Prostap jab, I am keen know it is reducing my PSA, however now I will have to wait until after the Easter break to find out.


Clearly they don’t think that the patient knows best. Has anyone experienced this issue?

User
Posted 29 Mar 2024 at 19:02

Like so much else in UK,  systems are overloaded with bureaucracy.  I have to wait for my PSA result until these are seen by my GP, yet I have been trusted to talk to students at the Surgery on radical PCa Treatments. 

Barry
User
Posted 29 Mar 2024 at 16:16

My  patient knows best only shows hospital results and not results generated by my GP surgery and visa versa. I assumed it was because the hospital is in a different Trust to my GP. 


Hospital scans aren't usually available on patient knows best for weeks, yet blood tests are. 


It's all quite confusing. 🫤

User
Posted 29 Mar 2024 at 16:27

Hi Ian


we had the same issue with my husbands PSA results. Now we just make a subject access request to the relevant hospital - we do this the same day he has his blood test and get the results by the next morning.

User
Posted 30 Mar 2024 at 19:03

I've never heard of that system but would like it.  My hospital says they're considering enabling patient access but it's like they told me they were getting a PSMA scanner 3yrs ago.   I suspect they don't like you knowing without consultation.   Some people on reading what looks like a poor result can become very anxious and need someone to talk to.   There are a lot of decisions in hospitals where it depends on what the particular consultant thinks is best, such as what level of psa is detectable.


Also if you ring the GP you often get a pre-written doctor script that says if it's below 4 it's OK.  But they'll just tell you it's alright which isn't the right anwer.


Best Wishes


 

User
Posted 31 Mar 2024 at 16:57

My GP uses system on line and I have the NHS app which I think is linked to the system on line. I used to really struggle to get PSA results out of my GP surgery, they now just send it by text even if it is a bad result. 


I did have an arrangement with my oncology nurses, I sent her a text saying I had done my blood test, the next day she sent me a text with the result. We then usually had a telephone conversation. 


I never got on with patient knows best,it was usually asking me to input data.


Thanks Chris 

Edited by member 31 Mar 2024 at 16:58  | Reason: Spelling

User
Posted 31 Mar 2024 at 19:04

If I have a blood test in the morning I can read my results on 'Patient Access' the next afternoon including my PSA score. I wonder whether any of our GPs look at them! I usually make an appointment to see a GP to discuss my results if I feel I need to. There is such a wide variation in the NHS services across the country despite millions of pounds spent on computer systems over many years which provide such inefficient services.


 


 


 


 

Edited by member 31 Mar 2024 at 19:05  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

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User
Posted 29 Mar 2024 at 14:18

Sorry to report using the NHS app I get my results as soon as a DR has signed them off. They are shown in my medical history.

User
Posted 29 Mar 2024 at 14:37
The issue is that it is just the PSA which I cannot see… the results of all other parts of the blood test are visible. Nothing is showing on the NHS app.
User
Posted 29 Mar 2024 at 15:31

Hi Ian,


Welcome to the forum.


I'm on patients knows best and many of my results, scans etc are withheld for a month.


Recently I've had my PSA checks done at my GP's who uses Systemonline, I usually can view these results unimpeded within 24 hours.

Edited by member 29 Mar 2024 at 16:02  | Reason: Typo

User
Posted 29 Mar 2024 at 15:47
Thanks for your reply… unfortunately it is the same. Systemonline/Airmid uses NHS generated data and nothing has updated to show the blood test at all, even though it appears on Patient knows Best. I will just have to wait until I speak to someone who can access and share my records.
User
Posted 29 Mar 2024 at 16:16

My  patient knows best only shows hospital results and not results generated by my GP surgery and visa versa. I assumed it was because the hospital is in a different Trust to my GP. 


Hospital scans aren't usually available on patient knows best for weeks, yet blood tests are. 


It's all quite confusing. 🫤

User
Posted 29 Mar 2024 at 16:20
Wow, the French system is so much better - blood test at 10am, results back by 4pm by email and on the web site.
Same for echos, CT and MRI - I get to see the full data sets - not that I know how to read them.
This is YOUR information so you should have full access to it - but I guess the NHS is different.
User
Posted 29 Mar 2024 at 16:27

Hi Ian


we had the same issue with my husbands PSA results. Now we just make a subject access request to the relevant hospital - we do this the same day he has his blood test and get the results by the next morning.

User
Posted 29 Mar 2024 at 16:32

The blood test was for hospital radiotherapy unit prior to my scan. I am assuming that it why it was available on Patient Knows Best albeit without the PSA result.


My initial urology consultations were at one hospital and details are on PKB, but the subsequent radiotherapy/oncology consultations were at a different hospital, where all correspondence is by actual letters and only GP scans of the letters show on the NHS app.


Patient data seems to be split into various datasets which appear not to interact. An NHS administrator told me that not only does the left hand not know what the right hand is doing, they often don’t even know there is a right hand. My son, who also works for the NHS, said that over the last 10 years constant restructuring has caused many more problems than it solved. That being said, my treatment has, so far, been excellent and just within the prescribed timeframes.

Edited by member 29 Mar 2024 at 18:38  | Reason: Not specified

User
Posted 29 Mar 2024 at 19:02

Like so much else in UK,  systems are overloaded with bureaucracy.  I have to wait for my PSA result until these are seen by my GP, yet I have been trusted to talk to students at the Surgery on radical PCa Treatments. 

Barry
User
Posted 30 Mar 2024 at 19:03

I've never heard of that system but would like it.  My hospital says they're considering enabling patient access but it's like they told me they were getting a PSMA scanner 3yrs ago.   I suspect they don't like you knowing without consultation.   Some people on reading what looks like a poor result can become very anxious and need someone to talk to.   There are a lot of decisions in hospitals where it depends on what the particular consultant thinks is best, such as what level of psa is detectable.


Also if you ring the GP you often get a pre-written doctor script that says if it's below 4 it's OK.  But they'll just tell you it's alright which isn't the right anwer.


Best Wishes


 

User
Posted 31 Mar 2024 at 16:37

Some places embargo PSA results for a length of time to allow clinicians to review it first. They claim this is so patients don't see a concerning result when they have no access to discuss it.


Personally, that would infuriate me (and my hospital doesn't do this).


My GP system (Systmonline) embargoes test results which are out of the normal range until the GP reviews and ticks a checkbox, but fortunately, they seem to do it within a day.

User
Posted 31 Mar 2024 at 16:57

My GP uses system on line and I have the NHS app which I think is linked to the system on line. I used to really struggle to get PSA results out of my GP surgery, they now just send it by text even if it is a bad result. 


I did have an arrangement with my oncology nurses, I sent her a text saying I had done my blood test, the next day she sent me a text with the result. We then usually had a telephone conversation. 


I never got on with patient knows best,it was usually asking me to input data.


Thanks Chris 

Edited by member 31 Mar 2024 at 16:58  | Reason: Spelling

User
Posted 31 Mar 2024 at 19:04

If I have a blood test in the morning I can read my results on 'Patient Access' the next afternoon including my PSA score. I wonder whether any of our GPs look at them! I usually make an appointment to see a GP to discuss my results if I feel I need to. There is such a wide variation in the NHS services across the country despite millions of pounds spent on computer systems over many years which provide such inefficient services.


 


 


 


 

Edited by member 31 Mar 2024 at 19:05  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 31 Mar 2024 at 23:15
We have PATCHS and SystmOnline - John can get all blood test results except his PSA which isn't uploaded until the GP has reviewed it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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