To think that I am entitled to see my own bloody ECG

[ProcrastinatorsAnonymous]

So here's the sequence of events. All in a city in the UK.

June 2024. I'm a healthy active woman in my 40s. I get Covid. I don't feel great, but it's OK. I get better. But then a fortnight later I realise I'm not better - I'm left with a selection of weird symptoms, the worst of which are debilitating fatigue, breathlessness and heart palpatations. I cross my fingers it'll sort itself out.

Oct 2024. It hasn't sorted itself out. I can't walk to the shops without stopping for a breather. My heart feels odd and fluttery and I'm aware of it working hard a lot of the time. I get breathless going upstairs. I'm struggling to care for my kids. I used to run half marathons.

Nov 2024. I get referred to the Long Covid Clinic. As part of that referral process, the nurse at my GP surgery does an ECG. The ECG shows up "something possibly not quite right". I am given a referral to cardiology for further investigation.

I wait for a few months. Still getting the weird heart symptoms and breathlessness.

I wait for a few more months.

I follow it up and initially they cannot find the referral.

They find the referral. I'm told I'm unlikely to be seen till Nov 2025 at the earliest.

I decide to go private. [And yes - I do reflect on how lucky I am to be able to make this choice]

June 2025. Private consultant does heart ultrasound, and all looks good, but he wants to see my original ECG to be sure. He tells me to get GP to send this. He doesn't redo ECG at appointment because I am self funding and he's trying to save me money (his time plus hospital fee plus ultrasound fee was getting on for £1k as it was...). Private consultant writes to GP requesting copy of my ECG carried out at the surgery in Oct 2024.

I am now locked in what feels like an impossible battle with my GP surgery to get hold of this ECG. They say it is an "unusual request" and there seem to be so many layers of admin / data protection. Every phone call to them is in fact 3 or 4 phone calls as the person I'm told I need to speak to is never there. It all feels impossible to resolve, and I'm starting to get really frustrated. They're now saying I might need to do a "Subject access request" to get all my medical information in order to get this one ECG - and who knows how long that would take.

I have 2 kids and I just want reassurance that I don't have a heart condition. The way the NHS have left it is "There's potentially something wrong with that, but you have to wait at least a year for someone with a better understanding of it to tell you what". So I've paid £1k for the person with the better understanding - but now they can't look at it because NHS computer says no.

As it's MY ECG about the fleshy pump in MY body, would I be unreasonable to to turn up at surgery demanding to be allowed to take a photo of it? Does anyone know what my rights are in this situation? Any Doctors receptionists out there who can advise the best way to navigate this? I appreciate surgeries are busy. But I'm surely saving the NHS money here.

I have the NHS app but the My Health section only shows the very most basic info about allergies and medicines. Apparently, you can request access to more detailed records - I'll do that and see if that includes the ECG. Thank you!

Bonkers!

He wrote to my GP surgery on the day of my appointment and cc'd me. A few days later, I followed it up - they said they hadn't received it. So I got the email address and emailed them a copy - still nothing...

Do a SAR

You can be very specific -.copies of all ECGs between date X and date Y.

If they say no or are slow, put in a complaint. If the complaint doesn't do the trick, go to the ICO

I don't know - he said he wanted to see the one with the unusual pattern from last autumn. He's a well respected cardiologist, so I guess he knows what he needs to look at. But yes - he didn't seem at all worried, which was a huge relief!

I don't know if it's standard but at my gp surgery they have to give you the information you need within 40 days. And the whole you would need all your records isn't true you can request just one thing. They can charge you for these things but often don't if it's just one thing

Have you looked into pots ?

I work in a medical centre. We do our own ECGs. The paper printout is then scanned onto the patient’s record and the paper copy destroyed. If at any point anyone needed to see the ecg, for example if it was to be included in a referral to a hospital it is simply attached to a referral OR emailed (in the case of a private hospital). If for whatever reason a patient wanted a copy for something it can just be printed out. If the admin person knows how to do it (and generally admin staff do know -it is easy. However if it is a new admin person or someone that hasn’t done this before they may not be able to do it as it can be a tedious (four min) job where a file has to be converted then saved then printed.
Basically it shouldn’t be a problem!

My ECG in the section called "Documents", try that.

Pharmacies are also able to give you a 24 hour blood pressure monitor, if you have concerns with palpitations then ask them. They will definitely upload onto the app as they have to in order for your GP to get the results.

Just get a new ECG. I wouldn’t be happy with a consultant making a call about an ECG done 9 months ago anyway. I’ve had many an ECG and I would want my treatment to be based on the most up to date information, especially if I was paying for it.

And yes, it’s annoying, but I suspect the issue is the print out is hardcopy and not even in the electronic notes. If there is nothing in the NHS app (I tend to find this under Documents or Tests and Consultations), then you can request your GP record as a whole. You may need to pay for it. I might be inclined to do that just on principle, but I’d still want an updated ECG.

I'm not sure that's right, medicalnresults are the data subject's personal information and the person has a right to it.

However, I did once have an issue. I now make clear before any NHS test that my consent to have the test is subject to me being provided with the results in writing.

@ProcrastinatorsAnonymous stop phoning and write a proper, old fashioned letter, sent by registered elivery. It has extraordinary impact.

I hope you get answers and feel better soon

Definitely sort your NHS app access out.

I have the full thing and can see everything including each time anyone accesses my record and whatever is written about me. I can see all letters sent and received and all test results.

It should be on your patient records which can be accessed online, surely.

I had a similar issue when I wanted my blood test results. The receptionist at the GP surgery said that she could no longer just print them out and give them to me, I had to do a SAR - or was it a FOIR? I don't remember the details exactly, but she told me exactly what to request so that they didn't end up printing out my entire medical file, just the specific results I wanted.

Dr here- if you do a SAR they have a month to provide you with a copy of your entire medical records, for free. You can then send it your consultant. You just write them a letter stating you are making a subject access request, with your details. They will then produce a copy of your record and you can pass relevant information to your consultant.

A GP is entitled to charge for any referral/letter or report they send to a private health care professional. Most don’t, but technically they can/should. If a private consultant (or any healthcare professional) asks a gp to do an investigation (bloods, ecg, x-ray, scan etc), again technically the gp should charge. If they put on that it is a private request, the NHS will usually either decline the request or charge for it. It’s a way of trying to stop private healthcare providers from using NHS to subsidise private care/undercut the purely private sector/circumvent NHS waiting lists. I have seen practices charged by the labs for bloods if it something gp’s can’t request but a specialist can and the gp puts that it is a request from a private specialist in order to get it done. It’s all a bit messy- some consultants forget about the slightly grey area when asking GP’s to do things for them. Obviously, less relevant to this case as it something the gp has already done and should be available.

Apparently a private ECG is about £75-£150. In the scheme of a £1000 bill I’d just pay for a new one.

Log into your NHS account, it should be there?

@ProcrastinatorsAnonymous I’d apply for the sars in the mean time while you are fighting it .
Moving forward ask for a copy of every result as. You go .

Just do a subject access request. Be specific that you want all data held on you relating to your hear including the ECH

They have to reply within one month

although it seems a silly way to have to do it

Thanks for responding! It's all very complex to navigate...

There's conflicting advice on this thread about whether or not an ECG from Oct is "valid". Do I need to get a more recent one done, or - as suggested in one post - could that not actually show the issue that happened to be captured during the snapshot in time when the first ECG was carried out?

[*With my understanding of course that this is an anon thread on the internet and none of this is actual medical advice!]

It's more that the first ECG showed something off - so he wants to see exactly what that "something" was.

Sounds like SVT. An ECG taken on the day (especially if you were asymptomatic at the time) will tell you sweet diddly squat. There as good as the 10 second time they were taken.

You're wasting your time.

Ask GP to request a holter monitor. That's what you need.

I wasn't asymptomatic, though - that's surely why the original ECG did show something? And why he wants to see that one.

I don't really want to be diagnosed on Mumsnet - and I'm sure the experienced cardiologist I visited would've arranged a holter monitor if he thought that was necessary after looking at my heart ultrasound.

I'm just looking for advice about how to navigate the system to get hold of the ECG he's requested.

Ultrasound and ecg are looking at completely different things - US looks at fluid flow through the heart. ECG looks at electrical activity. As a cardiac patient I can honestly say when there’s a concern with your heart they don’t mess you around. Hearts aren’t like some other stuff - it’s very easy to see how it’s working and if anything is worrying. It’s easier than suspected cancer. Also, if your heart is poorly it’s a diva. It isn’t a ‘shall I go to A and A’ you feel BIG SICK

Just googled it and my symptoms are not at all impacted by gravity, so I don't think it can be that.