Attended OPD for ECG 10 years ago. Asked for copy. Denied.
I was quoted the Data Protection Act (UK) 1998 and hospital policy.
Returned home humiliated and deeply traumatised. Many subsequent years of psychotherapy. Even now unable to come to terms with the invasion of personal space.
EDIT. Please see this in the light of the humorous intent with which it was intended. Beyond being somewhat irritated at the time, after an espresso and a couple of gauloise, I had recovered my sangfroid.
OK I do bring it up from time to time with my psychologist as we enjoy a laugh with a glass of Merlot.
Not really, being denied access to your notes isn't actually funny. I've just read through your comments to people's replies to your "joke" and find them insensitive and a bit rude.
As I've just spent the last three years supporting a friend whom has had to revisit the old trauma of losing her first husband through the contaminated blood scandal and took three decades to finally get access to all of her husbands notes only to see how badly he was treated I don't really see this type of distress as a laughing matter.
Perhaps you should keep off the Merlot before adding a post or at least consider whether people will share your sense of humour. This is poor taste.
Well good for you. Many contributors on here live in outside UK. I have lived half my life ( most of my adult life ) in Australia. The healthcare system in many cases ( not all, but many) uses different terminology. Thankfully, until AF mugged me I've never spent any time in the care of any organisation other than GP. Even more thankfully I have been super fit and managed to get my AF highly controlled so that all I need now is my repeat prescription, unlike many folk who seem to live in medical facilities.
I live in South Africa, but I am a Brit Cit, it's not a term used here, but I think it stands for Out Patient's Department, although I do wonder if that is correct as ECGs are usually done in the doctor's rooms.
I've led a fortunate life (in UK but mostly in Australia ) having only been admitted to hospital as an inpatient twice in my (almost 80 years). 5 days and 3 days respectively. Only once for elective surgery, knee replacement. Any other treatments have been direct with the clinician performing medical assessments in his/her rooms - or at what we call here in the south, a cottage hospital, for assessment/advice i.e. physiotherapy ! and A & E Urgent care centres. Plenty of ECG's but always at local healthcare centres. Plenty of blood letting too, also at local healthcare centres ( which incidently are not the same as a GP Surgery ).
I'm 81 - my first experience of a cottage hospital was when I was 3 and decided to put my finger in the cogs of the magle my mother was using ! My dad was still in the Army, had not yet been demobbed, so a neighbour who was back home rushed me to the local cottage hospital. Alas they counld help and I was sent to Windsor hospital where a surgeon performed the most remarkable operation. The tip of my finger was hanging by a thread and my mother had pushed it back in place, this gentleman carefully reattached a tiny 3 years old's finger tip. Today you would never know it had happened. I have never lost use of my finger and all there is is a slight scar.
Back in the day it used to be the Out Patients Department. Hope no offence taken. My throwaway was meant to be humorous as I’m sure you know. I do enjoy a bit of banter
Have you asked for a copy since then? Perhaps things have changed (we can hope!) When l was first diagnosed (by the Paramedics at home 6 years ago) they gave me a copy, to keep, to confirm the diagnosis because AF can be difficult to detect. I understand how you must have felt. It would have made me worse mentally and physically, thinking it was serious and l was going to die. That’s just me, unfortunately l am a pessimist.
I have asked for copies of all things and never been denied - even provided discs for copies to be put on - changed £10.00 for time taken to put on disc but never been refused yet. If you are able to get full access to the NHS App in UK it should be available on there shouldn't it? though I know it's hard to get on. Only available where I am in Wales since Easter and still not managed to register - still waiting for an e mail from them that should have taken 10 days! When I am bored will try and register again!
I have had copies of reports and scans and tests going back to 2015 when I asked for them. I have yet to be refused. I either ask at the hospital or my GP surgery and ask if they want a payment of any kind - so far only been asked to provide discs and a £10.00 charge for various x rays and scans to be put on disc at the hospital. I have even had one PET Scan disc sent to me registered post from the hospital a 3 hour drive away from where I lived at the time - this time just paid for postage. I also ask every consultant I see to copy his letters to my GP to me and offer to pay for postage and have been having this done since before 2015 as sometime before this my wife had been prescribed different medication by a consultant she saw and 3 years later when her condition hadn't improved she made a fuss to see another consultant for a second opinion (thinking that no action had been deemed necessary and found that the letter had been put on file and not actioned by the GP surgery - probably no t even read. Now when we see a consultant we get a copy of the letter and if necessary make an appointment to see the GP or consultant to discuss further treatment/medication if mentioned in the letter. I would have thought the ECG reports would be put on the NHS App if not the ECGs themselves. Though it would also seem that not every part of the NHS does this and it also seems that what is put on and how fast seems to vary from area to area. I have friends in the Oxford area and their Surgery seems to put everything on there within a very short space of time but friends in other areas don't always get such a good quick service or access to everything. It seems that to get full access to everything you need to do something extra when signing in. I don't know as I said because I still have not gained access to the NHS App! Though I did all the things asked and never received the confirmation e mail back. I presumed it was because lots of people were trying to sign on at the time when it first became available here so will try and go through the whole rigmarole again when I have time.
There are no ecgs available on my NHS App, not the one done in the Surgery, nor the more recent one done in a local Hospital on request from my Surgery. Nor any details of the report following the 24 hour holter I had just before my pAF diagnosis. I have asked for these reports, but nothing is provided re ecgs. This, in spite of my being allowed to see my 2 transthoracic echocardiogram reports. 🤔
My experience is definitely that anything related to ecgs is difficult, if not impossible, to access.
As I said, me too. I will keep asking my GP when I get a chance, but access to my GP is very difficult these days.
To be fair, re the Holter results, I was told by my GP in a telephone call that the report suggested "my heart was basically normal" 🤔... but that doesn't help really when my heart and its health is a moving target. Perhaps GPs are trying to avoid the needless questioning and concerns of patients if ecgs and diagnostic reports are released in full. However, if you are trying to understand, and contribute to, your own treatment plan, this attitude is very patronising.
Yes it is. I was lucky in that my EP went through everything with me on the screen in his office because he knew I was interested. I can understand that they don't want a lot of patients asking questions and trying to explain to them things which maybe they don't need to know and could possibly never understand. GP's don't have the time or energy for this I am sure.
In the States, we used to have the same problem, with our doctors and the hospitals being the gatekeeper of medical records.
Thankfully, In 2021, patient advocacy groups successfully pushed for a law requiring simultaneous release of health records to patients and doctors.
Because of that -- and with pretty much everything online these days -- I often see my test results before the doctors that order it do.
Also due to lobbying by patient advocacy groups, Direct Access Testing (DAT) laws allow patients to order certain lab tests without a physician’s order, empowering us as patients even more. The tests available are still limited and are usually not covered by insurance, but it's a start.
As a personal example, I might want to monitor my cholesterol more than the once a year my doctor orders, when experimenting with different diets. For $40 I can do that whenever I want.
Don’t forget that in the U S patients have to pay, here we don’t, well not yet! but it seems to be slowly going that way. If you buy something then legally it is yours? There are several companies here in the UK where you can get private tests. Bupa is one. I expect there wil be lots more in the future for financial gain.
Er what are your NI contributions for then if not partly to pay for the NHS? We most certainly do pay! Though many do pay privately for things they cannot get thru the NHS of course!
I think the difference is that with the NHS and other public health you pay into a "pool" and the pool pays the health provider. There's no direct link between the treatment and what you pay. With private medicine you pay the health provider(s) for what treatment they give you. A very direct relationship. You may get reimbursed by the insurance pool you pay into, but that's a different arrangement altogether.
I think the dark ages are slightly lighter Jim nowadays with the new NHS app and portal, I can see all my records, interactions with GPs, test results, though I appreciate you are referring to something 10 years ago and in jest. There is however today still a massive disjoin in the UK though between a joined up NHS system. Having had two recent visits to two separate hospitals, neither had access to the important records of the other …🤷♀️
Same here (UK) we can get Medicheck to test for about £40. Mrs Omniscient is a frequent flyer with them UK law has for many years allowed patients to see their records.
Here in South Africa, the results of tests done by Radiologists, Dexa, Doppler, etc, are given to you either in written report form or on disc while you wait,
For some tests, what am seeing is an interpretation and not the actual data. For example, I get an interpretation of an ECG, but not the ECG. While in the doctor's office, I have seen that they have access to everything, not just some summary interpretation. Is this also your experience?
We have something called MyChart from most of the major hospitals, but some of the doctors use other systems. Sometimes I've seen just the ECG report and sometimes the actual ECG. But you can request the ECG even if it's not there. Same thing with the CD discs. They're not in the cloud, but you can get copies on request.
While you are treated under the NHS it is their property and would not be cost effective for them to extend their services. Just because you agree to be examined doesn’t give you any right to alter their policies. They are paying for the test. When you pay privately you are entitled to have more control in that area and the results are your private property and those results remain with you until you give permission for otherwise. Lots of people use Medi-check. The results are sent to you. With NHS the results are sent to your GP.
The NHS still have the clause “If it affects one physically or mentally” - they can withhold your results. Therefore, you do not have 100 per cent control as you do with private results. This was my point.
PHPs comply with the same law, that includes that they may (and have the right to) restrict access to your records on the same basis as you quote above. Paying for it makes no difference. You do not have 100% control. I imagine that you, and me, and most others, fortunately have not found ourselves in the relevant categories to restrict access to records.
You will have agreed to this explicitly during admission or discharge, which if you agree to go back to the NHS is what is happening. Your Private Hospital records cannot be accessed by the NHS unless you agree, and vice versa. Your records are private to you. Some private consultants who also work in the NHS can 'probably' access both, but that is different. At all times you have right of access, copies etc.
Yes, absolutely, but they make the final decision before you can access, as to if you are mentally and physically ok. So it’s not “ at all times” because of this restriction. How they come to that decision would have to be proved, l expect, because of the law. I wonder to what degree of mental illness is subject to this restriction and if this could open up many other scenarios.
Any person subject to such a restriction would/should have a legal guardian who would indeed have complete access to the records. Is there not such a provision in your laws?
Yes, medical records are confidential. Here in the UK we either have to have permission from the patient or legally, to access on behalf of that person, we need a Power of Attorney which is permission from the courts to act for that person.
The right to access your records,results etc has been law for over 30 years in the UK .The only exception is if knowing your health could be mentally unhealthy for you I guess telling you you're going to die from cancer (can't think of any other example) or if it affects other people ( your wife has given you an STI??).I think you were given bogus information by people not liking this. I also get my ECG results etc on the Airmid app (a better version of the also excellent NHS app).
That jeremiad was hard to read. My sympathies are with you all the way. The problem, however, Jim, is clear to me and, well, to be frank, I am surprised not to you. An exigency has arisen in your life that demands attention.
You must forswear your fealty to that fermented Ribena that goes under the name of "merlot" and bow, in its stead, to the glory of a genuine claret - perhaps a suitably aged Graves or Medoc.
That will, at a trice, bring the vicissitudes of life, both past and future, back under your control and once more allow life's glorious equanimity to be achieved.
Now you’re talking though I tend to prefer a pinot noodle a gevrey chamber tin perhaps I thought I was something of a wordsmith but managing to include 9 obscenity’s in your post had me beat hands down
I’m not sure alcohol will purge my guilt but concede that embracing inebriation will ease my descent into my personal hades
I have a folder of ECG graphs going back over a decade as I have always asked for a copy and rarely been denied one. I’ll now be thinking that if I’m denied one in future, is there something seriously wrong 🤔.
I asked for copies of my records back to 1988 when my baby was born. Got a phone call asking "Do you really want all of them? Your file is massive and would cost a lot to print out. I opted for just gynae but even then they couldn't go back to 1988 because when they digitised everything around 1990, anything prior to that was destroyed. Not good. I needed records of an operation I had 6 months after his birth.
They may have digitised what went before. My surgery only recently digitised my Lloyd George Envelope, and it showed something I had when I was a kid as far back as 1974. If they didn't extract your LG information it may still be around.
No definitely not. I don't think they'd go back to my chicken pox, measles , scarlet fever and mumps in the 1950s somehow LOL. Always in November so I couldn't go to he bonfire. I was born pre NHS when we had a family doctor whose surgery was at his own home and who knew you almost from birth to death. Well obviously not but you know what I mean.
I have been reading this post from top to bottom with great interest and it puts me in mind of an operation I had when I was 10, 76 years ago which I was told was for 'TB glands'. I never knew what that was as childlike I just went along with it terrified and a very painful neck afterwards. I would love to know what it was and why today but would presume those records are long gone!
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Is Sugar it?
Today's the day Or is it? 
Is it anxiety,tachycardia or Afib?so confused
