Access to hospital medical records It

I have to phone the hospital to request my PSA results. Someone then phones me the next day with the result. They are not on my NHS app. I was told this is because I am under the care of the oncologist and not my GP. The delay in getting PSA results just adds to the anxiety 

I requested ALL my records from my local Trust. I seem to remember that I had to state a start date and that's all.

Then the fun started, first of all they couldn't do any better than photocopy all the paper documents but they had to be gathered from various departments. To do any of this I had to send a copy of my passport to verify who I was, I guess there would be other ID documents acceptable but as I had a passport handy that's what I used. 

Then I wanted copies of my scans but they could only supply those via a secure download server BUT they couldn't find a way to supply me a copy of my CT scan as I was the first to ask and they didn't know how to do it! Eventually they decided that they could download the CT scan data onto a secure USB memory stick. The first version that they supplied was anonymised which of course could have been anyone's data so they had to do that again with all of my personal data along with times & dates included. To view the scans the trust supplied reader software FOC. I collected the USB memory sticks from the hospital and again I had to produce ID at the point of collection.

So eventually I have a good stack of paper records plus quite a few special files of the various scans.

All of this had to be checked and approved by a legal department at the hospital, I assume just in case I was using it for some legal claim. 

There are rules that any organisation who holds personal data must abide by this includes the time scale in which this must be done. I didn't challenge the trust on their inability to meet these time scales but obviously they were aware that I could have done as I received quite a number of apologies about the delays.

A real challenge isn’t it!  I managed to speak to someone today at the hospital and she’s sending a form by post.  Once completed ‘ask for full access, from date, ongoing for all cancer consultations and scans’.  I have to contact the hospital where treatment is carried out and gain access there too.  Thanks for your reply 

Tekestar. I hate the wait for the PSA results why it can't be put on the app is an answer I can't get a clear answer to. No one seems to know who's responsibility it is. Drives me nuts 

Hello Shar (Shar) 

I understand how you feel - it depends just where you are how you get your results, here's how it's worked for me:

* PSA Test at the GP's - It's on my NHS App the next day (I have full access to my NHS records on the App).

* PSA Test at North Manchester General Hospital - It's on their own App, "My Chart", sometimes the same day but always with 24 hours.

* The Christie NHS Trust (I am under them now). The PSA tests are done at the local hospice and my results are sent by e-mail the following morning.

There needs to be one system throughout the NHS but there isn't.

Best wishes - Brian.

We have no information at all. Nothing goes on the NHS App so we have seen none of the imaging reports that led to diagnosis. 

When we see the nurse,  she tell us what his PSA is, but does not go through his other results and allegedly does not know how to print them for us.

Does my husband need to make a Subject Access Request?

Hello ansteynomad 

I think there's something wrong with your hospital system here. Your test results are yours and should be shared with you, after all not knowing leads to anxiety.

My first port of call would be your hospital PALS service (Patient Advice and Liaison Service). Tell them the problem and see if they can deal with the problem.

I would also be checking if your hospital uses any of the various Apps - many do now use one and if you subscribe to it your results would be available on the app.

Best wishes - Brian.

No solutions from.me but it is annoying and dangerous that individual hospitals, GPs and the NHS App not in sync. If a test requested via GP I can view results in a matter of days. Only this allowed me to establish that GP had totally misread my PSA results, had I not been able to do so then I would have been in even deeper trouble than I  am now! Tests requested by Oncology etc do not appear anywhere ""on line". A one line summary of e.g. Dexa scan result during a face-to-face less than helpful.

How not shared with NHS I do not understand.

Talking of records, my GP surgery didn't even bother to check mine although I asked on numerous occasions as to how long I would be on HT after being diagnosed with PC in 2018 and having 4 weeks of radiotherapy then only last week I was told after asking again it should have finished in 2021. I am so angry with my GP surgery.