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.

It's a paper print out usually, isn't it? Did they actually keep a copy of it somewhere or scan it onto your notes? I wonder if they're obfuscating because they don't actually have it? I'm not sure what they usually do with the print-out, whether they'd scan it or what.

I appreciate it's frustrating though, I asked to look at my notes a few years back and they acted like I was trying to break into a bank, I never did get to see them.

I don't think they've got as far as looking yet...

It's terrible really, like you say it's your body and you should be able to see what the scan showed, I can't see why they're being so obstructive. I don't think you would be unreasonable to go down to the surgery and ask for a copy there and then

Just pay for an ECG. Or ask can the GP write in a letter what the issue was.

Whack in a subject access request. It's easy and they have to respond promptly (within a month). Here's what needs to go into the email:

What should I include in a SAR?
We suggest you include the following information in a SAR:

• a subject line or header that says "subject access request";
• the date you’re making the request;
• your name (and any other names where relevant, eg your name before you were married);
• your email address, home address and phone number;
• customer account numbers, NHS number, employee number, product number or similar information that can help identify you;
• what personal information you want (be specific about the information you’re asking for, and where relevant say what information you don’t need);
• details or dates that will help the organisation find the information you want;
• the reason you want the information (you don't have to include this but it will help the organisation find what you need); and
• how you would like to receive the information (eg electronically or printed and sent by post) and if you have any accessibility requirements (eg large fonts).

Why should she? The OP is well within her rights to obtain her medical records without all this faffing about!!

OP, they should have scanned the ECG or coded it onto your medical records to be able to see.
Take a picture of your ID to your surgery and ask for a copy.

The g.p can read a basic
ecg trace and reassure you or refer you on, no idea why they haven’t done so!

Write a short polite request to the Practice Manager rather than keep phoning. Explain the financial implications and the personal need for basic information and I’m sure you’ll be grand. I wouldn’t bother with reception staff anymore as they are usually having to do dozens of tasks at once, being front of house, as it were.

I don't think the GP would understand it a this level - for anyone who understands these things, it has shown up RsR pattern in V1-V2, normal QRS duration. This can be an issue, but consultant said a pattern like that can also not be any cause for concern - but he needs to see it to be sure.

I might just go back and have the ECG, but it would be so much more money (more than £1k I think) and time away from work for another appointment... And it's frustrating when there should be a piece of paper right there!

Do you have the NHS app on your phone? I had an ECG at my GP’s, also following Covid where I had the same symptoms as you. The ECG was loaded into my records on the app the same day and then I could see what the doctor had written a couple of days later after she had looked at it. They referred me to our local chest pain clinic and the appointment came within 4 days.
It seems crazy that they would take so long and that you should have to seek private treatment. Could you speak to your GP again or the practice manager? I don’t know what your rights are here, but hopefully someone can help you here.
I know how worrying it is thinking you’ve got a heart problem.

They have referred me on - but the waiting list is over 12 months and I am getting heart symptoms in the meantime. Last time I checked (a few weeks ago), Nov / Dec this year is the earliest there was any chance of getting seen on NHS - that's why I made the private appointment.

Subject access requests have time limits. You have right to the information. However given that it was some time ago would it medically be a good idea to have a new scan? Continue with the request so could compare?

The consultant didn't seem to think it was necessary...

I used to process SAR requests for a NHS trust. That was my full time job, they aren’t unusual. Yours will be an easy one (unless they’ve lost your notes). Get it submitted!

Another vote to do a DSAR

to those suggesting you just do another ECG, the one now might not show the issue that was present at the time you had it at the GP. ECGs are a snap shot of right there and then. If you’re heart doesn’t play up while with the private doctor then the ECG will come
back as normal. Doesn’t mean things are normal

Helpful to know that SARs have to be completed within a set timeframe - I was afraid it was going to be a monumental task... Thank you!

I had one done and it was automatically uploaded to my NHS app. This seems crazy.

This is going to sound mad but they are not your medical paper they are property of the Secretary of State !!!! I had a very similar problem and this was the wall I hit . I’ve no idea why the Secretary of State would want our records but that is the legal answer . Crazy madness as I still don’t understand why it’s so bloody tricky to see our own records . I hope you get answers soon . Could the private consultant send a request to your gp ( I know that will cost but it would hopefully give you an answer )

Can you request them under the freedom of information act.

If your private consultant actually thought there might be a cardiac issue they'd get a new ECG, not ask for see one from 8 months ago.

I was coming on to suggest SAR as others have done. You may also want to discuss with PALs if you're not happy with the run around from the surgery, and they can further advise/support.

Have you checked your NHS app? They are usually uploaded onto there.

I'm sorry, that's bollocks about data protection. I'm a GP - if you rang me up and asked for a copy I'd get it emailed or texted to you same day.

Have you got the NHS app? If you haven't, start there. All my referrals and notes are on it. It's great.

Depends how good a scanner they have. My experience is that ECGs don't scan well at all on cheap scanners, so most that I've been sent by GPs have been pretty much uninterpretable, and needed repeating. (Paed, rather than a cardiologist, but they do send us some) Though it would be helpful to send it.