AF Association
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How do I get access to copies of my ecgs and blood results?

Hi everyone :) I've got a few questions that have been brewing for a while and with an EP appointment coming up, I'm sorry that I might have to barrage you with them. Thanks so much in advance for your support and expertise :)

So first off: medical records. I'm sure I recall Bob and others saying that you manage to get copies of your ecgs and test results, am I right?

I have an implantable loop recorder, and when cardiology printed out my latest AF events yesterday, I asked if I could have a copy for my own records. They refused - said its not policy. I asked them what the procedure is to get access to copies of my own results and they went and checked- and said I can see my GP to 'talk through my results' but that basically under no circumstances am I entitled to copies of my readings/test results. I argued pretty strongly, but they were adamant. Can anyone advise me? Thanks so much :)

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I’ve had similar problems, depends very much on the Health Authority, some will give you a copy, most won’t.

You ARE entitled to have copies of ALL correspondence between your GP & specialist, that is really easy to set up.

You have a right to view your medical records, but not to take copies - the law around who ‘owns’ the notes is complicated. Our surgery ‘vets’ all medical records - for good reason. The guidelines on how notes are made has changed dramatically over the years so the Clinic always has a obligation to safe guard you from harm. This take time and effort and your u have to pay.

In practice this means it is a very lengthy process obtaining copies of medical records and usually expensive.

So in theory - yes you have the ‘right’ but in practice you would need a good reason and be very persistent and be prepared to pay.

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Thank you CDreamer, that's very helpful information, and fits with what they said yesterday (though a lot less comprehensively or helpfully!)

I do wish I could have a copy of my ecgs though- it seems 'wrong' for them to withhold them. And what if I wanted to consult a consultant privately?

Thank you so much for explaining things :) x

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So glad you have brought this up , I had an implant loop in for 3 years that didn’t pick up my SVT episode . It’s all still under investigation but when I went into AF last year and then just before they took it out I demanded a copy to make sure it did see the AF and wasn’t moving till I got it !! With my experience with hospitals over the years I have always asked for copies of my ecg in ambulance and ANE ! And in my experience no one has stopped me getting it. Also every time my cardiologist or EP write to each other ? I automatically get a copy through the post as does my doctor. Strait after my ablation I left hospital the next day with a full report of what he had done in the procedure and results in my hand . It’s your right to see your results and don’t let no one tell you any different.

And them copies of ecg’s have came in very handy on appointments for other consultants to. Hope this helps 👍🏼

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Oh that's very interesting, Sam, thank you! I'm very glad that you manage to get copies of your ecgs - may I ask where you live? (What medical authority, I mean?)

I so sympathise about the loop recorder not recording. I've had problems that way too. It seems to depend on the parameters they set up - I'm pretty cross that stuff has been missed that I assumed was recorded.

Thanks again for your info and advice :) x

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No problem, and I am in Lincolnshire at the moment. The company that made mine has had problems with pacemaker and defibrillators , a source in the hospital contacted me to reassure me they do not use this company and the company now go under a different name . It was my cardiologist that blew the lid on it all last year ! I was told nothing was wrong every 3 months and had a good few runs of SVT on that thing but told everything was ok !! This has caused me so much distress with my anxiety and mental health issues. When I had my ablation they only thought I had PAF ! I asked the EP to please find the SVT and he said you don’t have any document on that but if it’s there I will find it . Low and behold on the day the SVT kicked off before my AF and also had PV tachycardia. My amazing EP froze and RF ablated in the one procedure. And was so glad to have found it all . I honestly don’t no how people have no idea about this company?? X

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Unfortunately it isn’t a ‘right’ to have copies, but you can ask and sometimes they will and often they won’t. Which is why I use Kardia and keep my own logs - which my EP accepts.

The law on this matter and good practice guidelines are quite ambiguous on this and they vary considerably from place to place.

bma.org.uk/advice/employmen...

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Thank you CDreamer! I really appreciate all your info on all this.

It definitely makes a kardia seem more helpful than ever... (I'm assuming there's a way of logging/printing/ sending your arrhythmia events?)

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You take your reading on Kardia, use the email prompt to email it to yourself, then print it off.

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Thank you! X

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I am surprised about the copying laws of medical documents in UK. Here in US I get copies of any medical procedures and tests. If you would like to get all your medical records from the medical institutions (local hospital) you do have to pay approximately $25 as a copying fee. Finally, some medical facilities and most doctors have to enter all information and tests into a digital registry which you can access and make copies on your own computer. You have entry just to your own records through passwords.

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If only.........

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How wonderful! :)

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Wish we had that system here in the uk but yes a Kardia has been my life saver I’m in Staffordshire whenever I’ve had an ambulance out to me they voluntarily gave me my copy if ECG but I’ve never asked at pacemaker clinic mmm May try that one cos I know by my Kardia device I’ve had a ton of AF and SVT I would like a copy of what my PM Has recorded since my last visit. I’m now under Glenfield at Leicester have an EP their and awaiting ablation date but he is awaiting copies of my ecg’s from my local hospital ide had my letter 2 weeks from EP where he made this request to my local cardiologist at this point I had app to see cardiologist well his registrar and only then was that request actioned so if health authorities can’t send copies between themselves we as patients have no chance according to that. I just wonder if ide not gone into see cardiologist that letter still maybe may not have been actioned you can see where the delays happen in our treatment. And now the government have cancelled all non urgent operations for a month that’s going to be even longer even though I’m now most likely in breach timeline for the wait and all because different authorities can’t get their act together and respond quicker with requests. And I’m an ex Nhs worker (mental health) so I understand more how things work and do tend to be a bit pushy as I know the law around these things but even I am left perplexed.

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I always get copies of my test results from my GP....actually available online now anyhow. Occasionally I'm given an ECG copy from paramedic or surgery. I have a record on my Kardia device as well which I've found extremely helpful.

A few years ago I asked for a copy of my 7 day monitor result and they looked at me as if I was mad. So no I wasn't allowed it..." it wasn't done ".

Sandra

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That's very interesting, Sandra, thanks :) Our results aren't available online, or not at my surgery anyhow ... and I'm getting the response re ecgs now that you had a few years ago...

Maybe Hertfordshire is behind the times?? :)

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I have never had any problems getting copies of my ECGs and ALWAYS have any correspondence copied to me.

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Can I take you with me next time, Bob?!! 😁

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I wish Bob!!!! see my earlier reply above to a post. My local hospital is a nightmare it’s hit or miss if I’m sent copies but the hospital where my EP is us brilliant I’ve had copy of his letter to my GP and cardiologist I’m now waiting for EP to write to me informing me which of the 3 options he’s decided to do ablation wise I only returned 5 day tape in 22nd December so I expect to hear soon I also copied my tracings done on my Kardia device just in case my heart was on its best behaviour whilst hooked up!!!haha don’t you just hate that I’m sure my heart knows when it’s being monitored the second the machine was removed I was straight into AF and boy that was a pretty major episode but the machine was off I was actually in the ECG department I said I was in AF they did nothing I would be thought at that point they may have wired me up to see what was happening instead it was thanks for bringing it back and bye bye basically a bit annoyed at that really but maybe that’s not protocol hey?? But it would’ve been great if he’d wired me up I walked out the department with difficulty involved he end had to find a chair to sit in I managed to record the episode in my Kardia device and waited for it to pass. The joys of our NHS system haha

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That’s not good :( Youd think they’d have at least recorded it then... Thank goodness for the Kardia, eh?

I always think I’m probably just not assertive enough about getting print outs of my AF, but last time I made a very assertive request and they were even more assertive in their refusal! Nothing like the response Bob and some others seem to encounter. Different areas, different policies, presumably...

Wishing you well :) x

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Oh thank you, Baba! That's very helpful.

Having read it, it strikes me its understandable the hospital wouldn't just give me a copy of my AF reading when I asked. But it's very frustrating. Especially when some places obviously do! :)

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That applies to medical Records - if you have an ECG done in A&E outside of your hospital - it may not make your Medical notes and I have found, from bitter experience, they won’t give you a copy of ECG, echo or anything else and the standard reply is that ‘we will write to your GP’. But paramedics, if called, usually will give copies so tip is to get one from them.

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It seems random, sometimes you get them sometimes you don't . Getting notes sent through from one hospital to another is a nightmare!! In a recent example I could not get notes and X-rays from Hinchinbrook sent through to Papworth, whether one hospital just did not ask for these notes or the first hospital was being difficult !I will never know! All I know is that I went along for a follow up appointment and no information about me was there. No one thought to contact me and tell me to come later when my results had been received.

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Oh how frustrating!! And if you had had copies of everything it would have saved that wasted time /stress & be an added security!

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Yes it was horrible. In spite of many letters to the hospital asking for a complementary appointment when they actually got my results I got NO where.

The really disgusting thing was that I went privately to the second hospital because I felt so ill and was so afraid..

My son , who then worked for the European heart foundation , decided to write on my behalf to the management of the private department also asking for a free follow up session and got absolutely no response.

These things really shake one's confidence , not helpful with AF.

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Oh how absolutely dreadful :(

What happened in the end? Xx

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Absolutely nothing!!I A lot of money down the drain.It is a long unpleasant saga , it has really undermined my confidence but.......

I need the consultant.... It 's as simple as that . I feel the change in attitude towards patients if they are seen privately or on the NHS is very marked. I have no money left now, I spent it all on guaranteeing that I saw the same consultant , now that option is not available .

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How gutting :( I'm so sorry to hear what you've been through x

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It’s all down to data protection laws. The hospital with the results has to have consent from you in order to pass information they hold to another party. This should be arranged by the requesting party. As a result of breaching the regulations a hospital can be fined mega bucks and individuals can be imprisoned as under the law we are all accountable for our actions

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Data Protection is only a small part of the story.

Other considerations affect what is released to patients is a Duty of Care ie - would it be in your best interests to have copies (and of course the people who wrote the notes) for instance - every time our surgery have to release notes they have to read them to ensure that no judgements have been notated which are over and above specific diagnostic criterial - eg - this woman has a hysterical nature. Judgements and opinions about personality or nature are now not allowed. Notes need to be factual or diagnostic. I think we all remember the old Acronyms!

There also may be information in the notes of which the patient may not be aware of and could cause harm. This probably wouldn’t happen these days but old handwritten notes from 40-50 years ago may very well contain information which could be viewed as damaging to the patient.

Who is the legal owner of the tests and notes and the procedures and protocols they write? The legal beagles often control this area.

Who is asking for copies and for what purpose? Competence may be an issue for some people.

The biggest problem in all of this is that it comes down to an assessment and judgement calls by the people who do the tests, write the notes and handle your care, with often many variances in interpretation.

I think I attended more CPD about writing notes than any other topic! And I wasn’t working in the public sector or as a medic but in psychotherapy - but the guidelines covered all note taking.

And you have the right to see and read your notes, with a professional present so you may ask questions - have sat with clients whilst that happens - but you don’t have an automatic right to have copies sent elsewhere or take them away but some will be more than happy to oblige.

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Ah that all makes a lot of sense. As always, you are so helpful and knowledgable, CDreamer. Thank you so much for taking the time to explain. X

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When I fisrt had AF in 2014 and HF I was in hospital for 12 days. I got most of my reports, scans, tests ect in my discharge letter (11 pages long) always ask for your discharge notes. On one visit to A & E I asked for my ECG when he ad finished and was printed off there and then

Had varous visits to cardio outpatients and when I have had ecg there some have obliged and some have not.

I had a echo in august this year, it was done in cardiac outpatients but it is now done by a private co for the NHS. I was told that I could not have a copy, company policy but to ask my GP, she ordered it and a copy would be sent there. Went and asked at reception and it was printed of for me there and then (thought they might charge but did not).

Just a a little aside when I had the recent echo I was in and out in 15 mins. This is the echo I took with me when I went privately recently to see and EP at Papworth privately. He was not happy with it it gave little information. He ordered another one at Papworth now on his NHS list. Had this, it took nearly one hour, she was very thorough scanned areas he did not, under the heart ect and also scaned the pulses in my neck - is the NHS cutting to very basic echos!!!!!!!!!!!

Cassie

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Wow - to the echo! Mine was less than 15 mins and nothing like that one. I'm so glad you got a good one on the NHS.

And that's very interesting about your records - thanks!

May I ask what county/authority you're in? Thanks :)

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It is malpractice to not give you copy of your ECG so it can be compared to any new ECG taken to see If there are any changes. Bitch like hell and threaten to sue. I'm sure they'll come around. Change doc as well..An echocardiogram will show if there is any cardiac dysfunction. Best of luck.

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Depends upon which country you live in. In the UK it is not malpractice and we tend not to sue the NHS at the drop of a hat, well most of us anyway as we would only be taking resources out of our own resources.

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Changing doctors is terrifying !

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Thanks etheral :) Because I'm under the NHS in the U.K. I think it's a different situation. It's very interesting to know how different places work. Where are you?

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I live in Maine USA. Must admit I have never had that problem here. We hospitalized in Calgary AB once for heart attack. They gave me my records upon discharge. The printed material was helpful, but computerized copies of procedures such as my angioplasty could not be read by the software in the states.

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Information re online records:

england.nhs.uk/patient-onli...

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Thank you, baba!

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In Ontario Canada you can get all results from blood tests on line once you register to do so. It will show Everything re. Levels etc. ECG can be obtained with only the ok from the attending doc at the time ,which is never a problem to get copies right after you have had ecg. They are also sent on to your G.P. and ep automatically. ( except when they forget to do so). Then it becomes a problem, so I always ask for a copy so l can give it directly to my ep. quite often he says OH they forgot to send me one, Thank you!

Yes. You must look after your own med records.

Ps. I am feeling much much better after my last ablation on aug 30/17

Cross my fingers.

Marney

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Thanks, Marney. I always thought Ontario sounded like a good place to live :)

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Sorry sent before saying great news you're feeling better - hoping this is for keeps :)

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Hi Jane, ditto CDreamers response. If you have reason to call an ambulance, the Paramedic is more inclined to give you a copy of an ECG. Best advice I can give, is make sure all negative test results are sent to your EP. Insist that they email or fax the copies across. To be fair, it is difficult to understand the ECG results and you will only be frightened by the 'Heart Failure' result it suggests for AF.

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Thanks Rich, that's very helpful.

If you were to see an EP privately for a second opinion, would you then have to request the test results & readings from the original EP?

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I think you may struggle even though there will be more respect between 2 EP's. From experience, you are more likely to get offered a cup of tea and a 15 minute session if you go private. My doctor gave me a funny look when I suggested going private followed by, 'why on earth would you want to do that, the procedure will be carried out in the same lab by the same specialist in either case'. I stuck with the NHS and am grateful for all that they have done for me.

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