Access To Patient Records : Just want to get my... - Thyroid UK

Thyroid UK

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Access To Patient Records

carnation profile image
10 Replies

Just want to get my facts straight before I complain.

I had access to all my records visible on Patient Access and the NHS app last year.

At some time this year everything prior to September ‘23 disappeared from these apps. This is not confined to my records - hubbies and other friends have gone too.

I wrote a letter to the practise manager asking for information and requesting reinstatement, and handed it in to reception.

This was ignored, so a couple of weeks later I sent an email also to PM. This was acknowledged by someone who said it had been forwarded to the PM.

That was on March 20th. There has been no response 🙁

So am I now within my rights to ask for a full print out of my records?

I don’t really want to do this, but I no longer have access to 25 years of thyroid results, or more worryingly my notes from last year’s cancer diagnosis and surgery.

Any other suggestions appreciated.

I don’t want to rock the boat too much as there are some good doctors and wonderful nurses there.

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carnation profile image
carnation
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10 Replies
helvella profile image
helvellaAdministrator

You are entirely within your rights to put in a request (a Subject Access Request).

This should not be necessary but if it appears that they are not playing by the rules so you might very well have to do this. You might find that they choose to provide the information electronically - it isn't an entirely free choice for you.

More information here:

ico.org.uk/for-organisation...

Have a look at posts by  DJR1 who has very helpfully tried to keep us informed of how patient access is going - good and bad.

carnation profile image
carnation in reply tohelvella

Thank you for your useful information.

Also DRJ1’s post show it is complicated. I have wondered about ‘docman’ on my records (now vanished) in the past.

Obviously I don’t really want 40+ years of paper records , but it might come to that. Battle resumes tomorrow!

helvella profile image
helvellaAdministrator in reply tocarnation

Keep going - and all the best.

McPammy profile image
McPammy

I lost some of my history from my patients access account. It was all documents from the year 2023. I called my GP practise and like yourself I felt it was ignored. I phoned periodically but no answers to the problem really. I emailed and made a complaint about it. I did get a reply by phone apologising. Then a month later my 2023 documents reappeared. It did take nearly a full year but eventually I got all my access back. They said it was an IT issue that had happened to some patients but not all. I know it’s not the same as your situation but just wanted to let you know that I don’t think the system is perfect and it seems to take forever to sort any issues out.

Heappestre profile image
Heappestre

I noticed that my husband has records going back to 2007 in his app, and mine are only from this year. So I went hunting for why. Found it on the NHS website:

nhs.uk/nhs-services/online-...

So the change in system in 2023 is why you can see recent ones, but not older ones.

It's probably worth emailing again, adding in this link and asking why you don't have access yet. If you don't want to come across forceful, maybe ask on the progress of your request? The link does say it can take a few weeks, but they should be telling you that at least.

If you get no joy from the PM, write an email addressed to your GP. They don't always know when their PMs are not doing their job unless patients tell them.

I know you don't want to rock the boat, but you need to as it sounds like they are ignoring you. I'd put a complaint in if you don't get what you want. Make sure you put complaint in the title and body of the message. They have to deal with those. If they don't, you can then make a request under the Subject Access Request.

carnation profile image
carnation in reply toHeappestre

Thank you for the link. I’ll try that approach next, and follow up with a complaint if necessary.

BeeOrchids profile image
BeeOrchids

If you have time to go into your GP's surgery that might work. More chance of one of the doctors overhearing the conversation which reception and the Practice Manager will want to avoid.

I found this worked well for me as for the third time in so many years my access had been removed. I very politely but firmly said I needed that access and within days it was sorted

carnation profile image
carnation in reply toBeeOrchids

I actually had a conversation with a GP a couple of weeks ago about another issue, and asked about the info on the app. He sounded mildly panicked 😱 and said he had no idea, he could just cope with what he needed to do. He had been very helpful otherwise so I let it drop, as he is the one who sticks up for me when the others tell me I am overmedicated with a TSH of 0.05!

Tanglewooddream profile image
Tanglewooddream

I also lost all my previous records on Systemonline in October 2023. I asked for them to be reinstated and the practice asked to submit a subject access request, which I did. What I received a few weeks later was an email with a link to a database which eventually gave me all my past records, even going back to a broken arm at the age of twelve. Unfortunately these records were hard to trawl through, many were incorrect (my daughter’s birth date wrong/my birthdate and address wrong) and even had some records which belonged to other people! They have also changed and some have disappeared after a few months. The test results, even from last year, now show no ranges or levels, in fact most say ‘result not known’. Four weeks ago I sent an email asking for my records to be put back on Systemonline, as they were till last October. This was ignored so I sent a second email to a different address on their system a week later which was also ignored. I am on holiday at the moment so will pursue this again when home. I have relatives whose past records have not ‘disappeared’ at their GP practices so struggle to understand why some of us have lost access and some have not.

serenfach profile image
serenfach

When you finally do get your records (mine only went back 7 years) be aware they may contain a range of wrong information. A stiff gin may be required when reading!

I changed sex twice, had an op for piles that I never had, My age changed and I was weighed at 6 stone at one point, with a blood pressure that would mean I was dead!

But you are legally entitled to any and all records they have of you, free! They can only refuse if they think the information they pass to you may cause mental trauma.

So when you do get them, open a bag of popcorn and start. Popcorn is difficult to throw, does not break anything and can be hoovered up when you calm down... Good luck!

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