Receiving medical records in the UK - what is included?

To those UK folks who have obtained their medical records:

What was included in your records? I have been given access via Patient Access - one of the four portals that the NHS now uses.

I have essentially been given documents - mostly scans of correspondence between my GP and consultants / hospital departments. I already had access to vacinations and a list of 'problems'.

I imagine this is a subset of all available information. What about notes from standard GP consultations i.e., the notes the GP types? Is this included?

 

I applied for a copy of my complete GP records - allegedly it was supposed to include a copy of everything held by my GP but it obviously wasn't. I know that there were no records at all for some (fairly recent) years. I would be very surprised if there was a single year in the last 40+ years where I haven't gone to see a GP at least once. Compared to what some people have received (which was virtually nothing) I think I did quite well, although there were glaring gaps.

I don't recall receiving any copies of referral letters from a GP to a hospital consultant or department. I suspect they were excluded because they were rude about me. I did get some correspondence going the other way although I know it wasn't complete. I have had a few operations that there is no record of at all in the info I was given.

I got no information at all referring to any alleged mental health problems I was diagnosed with. For example, if I ever complained of pain I was almost always diagnosed with anxiety or depression in some shape or form and offered anti-depressants, but there is no evidence of that in the records I got.

I also got the results of some blood tests. The older ones did not include the reference ranges so were virtually useless.

I got what was supposed to be doctor's hand-written notes that were made during consultations or soon afterwards. They had one thing in common - they were all almost completely illegible apart from the occasional word here and there in some of the records from the 90s.

I received no scan results or copies of x-rays or any reference to any such things ever being done, even though I've had a few over the years.

I was given a copy of my Summary Care Record. That was shocking in how little was recorded. What was recorded was simplified so much that it bore little relationship to reality.

I keep meaning to write to the hospitals I've attended over the years and ask for copies of my records but I am sure I read recently that hospitals only keep eight years worth of records. I will do it one day, and I think I should get a move on. I suspect our access to records could become expensive or unavailable if/when Brexit happens and we lose lots of rights that we got courtesy of the EU.

 

This is so frustrating. There is literally no standardization. At my surgery when I lived in Reading last year I had blood test results on the online portal (which was Evergreen Life), without asking for access to my medical record.

Now I've asked for it and I have absolutely no blood test results. This is not my full record.

What is included in the Summary Care Records? I think this might be what I'm after. Actual notes input by the GP to a system....

 

That's not in the SCR. The SCR is the absolute basics so that if, eg, you were in an accident the treating Drs could see what medication you were already on. Or at least that's the idea. What the GP actually writes is held by the surgery afaik

 

So all the notes the GP makes in a consultation or after, has anyone seen that in their record? My 'documents' simply comprise scans of correspondence between my GP and other departments / consultants in hospitals.

 

Not available as an option on my surgeries online service (SCR).

I have a summary patient record which only contains some prescription information.

I have a patient record which apparently I am not allowed access to (it says my practise doesn't allow it)

and I have a childhood vaccination record, which is wrong, it says I was/should have had a load of vaccinations when I was 14, I didn't, and it also doesn't mention a load that I, and the whole year at school, had when I was 10/11.

Paper medical records, when requested by a tribunal, held mainly wrong information.

That's not to say that the actual medical stuff was wrong, but the 'admin' stuff was (e.g. claiming hundreds of missed appointments when in the last 20 years I have only missed one, the rest were either canceled or rebooked, in good time).

I do not know if the medical stuff was correct/complete, but there were odd bits from my GPs notes, brief summaries of consultations, in a lot of cases showing how poorly I must have communicated why I was there.

To confirm the above re; patient records - I've just been called by the surgery, after making an online request for my online records, and told they do not do this, that if I wish to see them I have to make an appointment at the surgery.

So I have to ask....what is the point of an online medical records service that will not allow you to view records online?

 

Luckily, all I had to do was email my surgery's reception a Subject Access Request. A day later my Patient Access portal had new info that was previously hidden. Unfortunately it's not my full record!

 

Interesting that there are different approaches to this.

All my GP notes and blood test results for the last six years were included. It's easy to separate the consultation notes made by the GP who does his own, complete with typos from rushing; and those translated into complete sentences with no typos, from the GP who prefers to handwrite hers on a notepad and get someone else to enter them. A few weeks later, I even received a CD of my spinal MRI from the hospital – that did surprise me, but the practice manager must have assumed it was part of what I was requesting! (Never been able to view it, though, as the software doesn't work on a Mac.)

I wonder if it partly depends on how the request is made? I had to fill in a form that asked what types of records I wanted, and for what period. If the system is less clear or less formal, then I suppose the results would be more likely to differ.

 

well it seems you have what I expected to have - namely GP notes from consultations.

 

Im 32 and it seems my record goes back to 2011 (not sure why only then). I assume that's the time electronic records started to be used more widely.

The law is now that they must provide you access for free. Production of new material (e.g., letters) and printing may be charged.

 

thats possibly only the electronic part; your records before then might not have been digitised yet
https://www.gponline.com/gps-face-huge-task-digitise-lloyd-george-records-2022/article/1525421

eta:
6. Do I have to pay to see my records?
Before the 25th May 2018, If NHS staff have updated your records in the last 40 days then you may be able to view them for free.22 If you need a copy, or they were last updated more than 40 days ago, the NHS can charge you.
The most the NHS can charge you for an electronic copy of your record is £10.23 If your records are handwritten and need to be photocopied, the record holder can charge you up to £50.24,25
However, from the 25th May 2018 the General Data Protection Regulations (GDPR) changes these rules. From this date, there should be no charge for a copy of your records, unless you are asking for a very large amount of information.26

soI guess it depends on what they call a very large amount of information

 

I should have made clear when I replied in post #2 that I applied for a copy of my entire medical record in 2014, it wasn't very recent. It was given to me on paper! I have online access to order repeat prescriptions and to make appointments in (roughly) six weeks time for some of the doctors in the practice, but not for the doctor I'm actually registered with. If I want to see my own doctor (or her job share partner - my doctor works part time) I have to go in person to the surgery and ask for one of these appointments that are weeks ahead. I have no online access to any info from my medical record at all, not even blood test results.

If I want to see a doctor quickly I have to be up at the crack of dawn and have to be at the surgery by 7.30am to queue up in person for the surgery opening at 8am. I would normally expect to see about a dozen people already ahead of me in the queue. Then I will be offered an appointment with a random doctor. I am not allowed to specify which doctor I want to see. Theoretically I could phone for an appointment - but I would probably have to have an autodialler of some kind in order to have a hope of getting through.

Regarding standardization of what people are given... It is up to the patient's doctor what information is given to the patient, so that could depend on the whim of the doctor or the person preparing the copy. I was aware that anything that could potentially upset me or my mental health could be kept out of the copy I was given. So any insults would be excluded.

Since I don't trust doctors I was deliberately extremely vague about why I wanted the copy. (I was asked, even though theoretically nobody should be asked. It's my data and, by law, I don't have to justify why I want a copy.) If I had said why I wanted the data I fully expected it to be "disappeared" so I was non-committal. I got some of what I wanted, thankfully.

 

Advocacy services re the NHS: let someone healthy take the strain of getting your full medical records.

https://www.nhs.uk/conditions/socia...arities/someone-to-speak-up-for-you-advocate/

 

I advise you to covertly record GP appointments in the future.

 

I take my husband to appointments now and have done for a few years. My mental health has not been mentioned since. And generally speaking, the appointments I have are far more pleasant generally. But I take your point about recording appointments.

 

Your surgery can't deny you a copy of your GP records if you make a Subject Access Request (SAR). Theoretically, an SAR can be made verbally in person, by phone, by email, or by letter.

https://ico.org.uk/your-data-matters/your-right-of-access/

Regarding access to your medical records online I found this link which might be helpful :

https://www.england.nhs.uk/publication/gp-online-services-easy-read-guides/