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.

The holter and the ultrasound don’t look at the same thing. Go on the BHF to learn a bit more.

I would phone 111 next time you have palpitations. The liklihood is they would get you in for an ecg and you can physically take away the print out. But like others have said it doesnt mean much - its a moment in time and it sounds like you need an echocardiogram which they should refer you for.

ECG= electrical activity in the heart
US of heart/doppler = fluid passage/muscular function.

The heart has 2 basic mechanisms! You cannot diagnose one from the other!

Ok. You do as you wish. I shan't tell you any further (I happen to have a pretty good idea what I'm talking about ) good look with your quest. I'm sure you'll end up spending some unnecessary ££.

If your ECG showed an MI or any other acute event, you'd have been in hospital by now, same with arrythmia. So, you can guarantee it's normal. But , carry on...

Yes a copy of mine was loaded o to my nhs app within a few days.

I honestly believe that the consultant cardiologist I went to see knows even more than the BHF website and has requested what he needs to assess the health of my heart. A holter monitor is usually only used after an ECG and... he hasn't seen the sodding ECG yet. Hence my post.

I appreciate people sharing their experience, but unless anyone on here is claiming to be a Doctor, I do not want people on Mumsnet telling me what tests I need or what might be wrong with me - that way utter raging madness lies.

I've been to A&E with this when I had really bad palpitations and chest pain during the night. Sat there for hours in the middle of the night and was then dismissed after a 3 min appointment in which an exhausted doctor listened to my chest with a stethoscope and took my blood pressure.

As you say,your consultant is very educated and experienced. If he were at all concerned you would be in hospital instead of posting here. They don’t fuck about with hearts.

Yes - this is what I'm hoping. And similarly, the NHS feeling it's OK to leave me waiting a year before even looking at me. And the fact this has been going on for a while now and I'm still here... I'd say symptoms have improved over time, but not completely disappeared (oddly, today was quite a bad day - don't know why).

I just feel that as he asked for the ECG, I'd like him to see it - just to feel the loose end has been tied up. I wish he'd just done it at the time - would've been another £200 ish - but if I have to go back for it, there will be his consultation fee again on top of that too. (I am self funding)

I'm glad you're not my patient. You think you know best clearly. I'm glad you've paid privately. The NHS doesn't need your arrogance.

But if you have asked for it, you already have done a SAR (asking for the info, even verbally nowadays is a sar) but it looks like you’re going to have to point that out to them, and that the clock started ticking the first time you asked for it.

Pipe down. The op is worried about her health and has a right to this information and to try to get to the bottom of her symptoms.

Move along.

I bet it wasn't scanned in which is why they are being difficult

Hearts aren’t like joints. Generally. If they’re poorly they make you REALLY poorly. This isn’t like misdiagnosing a mole, or a change in breasts or bowel habits. Hearts aren’t like joints VERY obvious if they’re poorly they aren’t working right, But you do you, The worried well keep private medicine rich.

I'm a NHS cardiology admin. When GPs make referrals to us,they have to send in a copy of the ECG along with the referral. This is used to triage patients(by cardiac physiologists and cardiologists) and decide what type of appointment they need. It might be worth a call to the department you are under to ask if you have been triaged,if they have a copy of your ECG and would they be willing to email it to your consultant.

What on earth?! That took a turn!

I'm not sure how to interpret this. Do you meant that my attitude towards the NHS is arrogant? I'm certainly feeling let down by it - but I've been very polite to everyone I've interacted with there. I just took the reluctant decision to use some savings to see someone privately. I don't think that's arrogant. I don't think I'm better than the NHS or anything - I'm just worried.

Or do you mean the way I'm following the advice of the consultant? I don't think I'm being arrogant there either - I'm respecting what the consultant has told me and trying to do what he's asked me to do.

Or is it my interaction with you that makes me arrogant? I think I'm allowed to say that I don't want possible diagnoses thrown at me online. I am posting here for tips about how to negotiate the red tape at the GP - and the advice here about the timeframe for the GP to respond to a request and making use of the NHS app (which I never think to use) has been very helpful. I was not posting here to be told that it's SVT or Pots or anything else.

I'd ask instead that you look at the flippant way you gave an unsolicited internet diagnosis about my health condition. You said to a person who you know is a) worried about their heart and b) paying £1k to see someone because they didn't feel they could wait a year -

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.

Read it again. You wrote a series of sweeping, definitive statements. That's arrogant.

I'm not completely sure what you mean - but it won't cost any more for him to look at the ECG - that's part of the original appointment I've already paid for - he would've looked at it straight away if he had it. So I don't think he's trying to make money off me in relation to the ECG (sorry if that isn't what you mean).

But yes - I agree that it sounds like everything is provably OK. Which is why I'm not loving diagnoses being thrown at me in this thread! This was intended as a strictly admin-based discussion!!

Good grief, some of these responses are bonkers.

It is wrong that they have not provided you a copy of the ECG (or admitted they can’t because it is lost!). Doesn’t matter if you want it for a legitimate medical reason, pure nosiness or to make a personalised wallpaper template.

Yes, an ECG showing an issue occurred at a past point in time is useful, even if a current ECG does not show the same issue at a new point in time.

And this would be the case even if you were being a bit obnoxious, but you aren’t even being obnoxious in the slightest.

OP: take the useful responses about navigating a Subject Access Request. Ignore the others.

Ah - thank you! This is really helpful. Because I haven't been seen by NHS cardiology yet, I didn't think to ask them to send it instead of GP surgery - but they will presumably have it... Thank you so much!

This is so untrue.

Plenty of people walk around with AF, mild heart failure or heart murmurs without being REALLY poorly.

I can tell you that a ten second ECG would not have shown anything of note. If it had, you wouldn't have been sitting at home the same day. You'd be in hospital. ECGs show acute events. That's factual.

If you're getting breathless and having palpitations, you need an ECG taken at that moment. If not, it's useless. If you were having palpitations and were breathless when it was taken : and it was normal (we can assume 100% that It was, I can assure you ) then it's not your heart causing your symptoms.

Holter monitors show a prolonged trace to capture any arrythmia. Ecg is futile in these set of symptoms you describe.

I commented because you're getting flustered chasing an ECG that means sweet FA. But you seem to be fixated on it aimlessly. But, there you go. You didn't want professional advice. I will indeed slink off. It's up to you if you want to chase a pointless ECG.

All of which are not immediately life threatening and all of which won’t necessarily warrant treatment.

@Kinkyroots but maybe we'd like to know about how our own bodies are working anyway?

Irrespective of the medical issues, we quite rightly have robust rules regarding the data organisations hold about us
Op is legally entitled to her data.
And if her data has been lost this should be investigated as a data breach

This is what I was going to say. They've probably lost it/got rid of it but won't admit it.