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.

Are you a doctor @SquashedMallow ?

Because a consultant cardiologist at the top of his field has asked me to chase up the ECG. So I am chasing up the ECG.

And you are getting bizarrely angry with me for following the explicit instructions of the cardiologist over the advice of someone on an internet forum.

I am not a medical professional, but my layperson googling tells me that although ECGs can indeed show acute events, that's not all they can show. They are also able to detect chronic conditions, enlargement of the heart, reduced blood supply, problems with the how the heart's electrical signals travel. I could go on, but I won't - because a little knowledge can be a dangerous thing.

Who said anything about being immediately life-threatening?

Your post said “If they’re poorly they make you REALLY poorly”.

AF, mild heart failure and heart murmurs are not normal (aka poorly), but don’t make you REALLY POORLY.

You said poorly, not life-threatening.

You seem to know best. Therefore I'll comment no further.

Yes. I deal with SARs in my Trust. Its the formal (and only) way to request your information.

I don't know best. The consultant cardiologist knows best. That's very much my point.

Wtf! 😡

Make an appointment with your GP and ask for first your ecg directly face to face. Then you will get a sensible answer.

My ecg is my nhs app

I’m a GP and I find this very strange. If one of my patients came to reception wanting a copy of their ECG, the receptionist would pop down to my room and say “Mrs Smith wants a copy of her ECG, am I OK to print it” and I would say yes. Whole thing sorted in less than 5 minutes.

Thanks for responding. So am I correct in thinking that I have a right to a copy? Perhaps I’m getting unlucky with the admin people I’m getting through to. I’ll see if it’s possible to talk to a GP directly. I’m wondering if I should go there in person, but I don’t know if that would be interpreted as aggressive…

The NHS is just a basket case. All they have to do is provide you with a bit of paper and you will save them the time of a consultant appointment ..crazy

anyway. I would suggest that you also get yourself a Kardia monitor. It allows you to do a 12 lead ECG in conjunction with your phone, which you can email to your consultant. It doesnt solve the issue of the original ECG tracing, butyou can record a new one whenever you feel a bit dodgy…which is when you are more likely to be having aberrant heart issues..and then the consultant can look at it. Heart problems have a very annoying habit of going dormant as soon as you set a toe in a doctor's office, so a little device you can keep in your purse and take everywhere solves that problem. You can buy it on amazon..get the 12 lead one,and I hope you get a good diagnosis soon

in the meantime, take the full rda of magnesium every night before bed. Most people are deficient and it can impact heart function

OP, I am sorry you are getting some unpleasant responses. Of course you want to follow the advice of the consultant.
GP practices differ enormously. I have worked in many.
It is frequently the case in Gp and hospital that phone calls are a complete waste of time. Emails often don't work either. As a pp suggested, type and print a letter explaining exactly what is required. Include dates and times of phone calls and names of who you spoke to. Address one to your gp and one to the practice manager. Get the correct names from the practice website.
Post recorded delivery.
There is a saying in the nhs that I was told nearly 50 years ago. " If it isn't written down it didn't happen". Still true today.

Some needlessly horrible responses here. Ignore them OP.

I have some heart issues and I know how scary it can seem. I don't know if you're anywhere near London and not won't help now but for anyone else reading this thread London Private Ultrasound do a heart health package where you get an echocardiogram, ECG and consultant appointment for about £400ish. I used them once because I was told I might have a dangerous issue just before I was going on holiday and didn't want to spend the whole time worrying until my follow up appointment 2 weeks later. Got a same day appointment and was reassured. There are other similar clinics in London but I used this one and was impressed with them.

The NHS is bonkers though about medical records. One of my DC is disabled and gets some testing done once a year - it takes about 4 hours. They are then meant to send the report to the hospital consultant who sends it to the physiotherapist. I get a copy from the physiotherapist. One year we had waited 6 months for the report from this test (not that unusual) but needed it before DC had a surgery. The test lab said they'd sent the report 4 months ago but neither the hospital nor the physio had it. Test lab said they would email it to the hospital again. Hospital still say they haven't got it. I ask test lab if they can just email it to me or even straight to the physio or just cc me. But no that's not allowed. They told me I had to do a FOI request before they could send it to me. That would have been too late for the surgery. It's absolutely bonkers.

That’s utter rubbish. It blatantly your data. It’s information about you. And medical information is specifically covered in the GDPR.

Who “owns” the information is not relevant. I can, for instance, request CCTV that has me in it. Regardless of who owns it. I can ask my financial services company for all the information they hold about me. They hold that data and own it but it’s about me so I can request it and dictate to an extent what they do with it. Who owns it and whose data it is are two different things.

I know it’s ludicrous. Blood tests done by my GP I can see immediately online. If I have a blood test done by the hospital I’m not “allowed” to see it (like I’m some sort of child) until the consultant has seen it and sent me a letter or I’ve had an appointment. Which can take weeks. I fought with a hospital for ages over it as I wanted the results ahead of the appointment so I had time to consider them and think of questions. Honestly you’d have thought I was asking them to time travel or teach monkeys to write Shakespeare. It was ludicrous. They also wanted a SAR which would take them a month to respond to! It’s my bloody data. I really don’t understand why the need to gatekeep it in this way. So infantilising. And the endo gad the utter cheek to call me “anxious” about my results. I gave him short shrift about that. I was very sick and they were utterly shit on top of this issue so I just left them and went private and now have complete access to my results.

Having said that I did have a.similar issue with a private hospital in the past who refused to give me my private scan results which I’d bloody paid for! That also infuriated me but was also too unwell for a battle at the time.

I'm a dr - those people who are saying that the ECG from months ago is irrelevant are wrong - it gives information aboout what the changes were when it was done. Someone else has already used the example that I often use when explaining it to patients - the ECG is like a photo that captures exactly what was happening at that time. I often look at previous ECGs when notes arive - it can be helpful to know if the changes are there all the time, or have altered since the last ECG.

If you have an ECG now and it's normal, then it doesn't mean that your previous ECG was normal. The cardiologist has asked for the old ECG for a reason.

I echo the other people who work in the healthcare system that an SAR is appropriate, although I would be reminding the GP that Good Medical Practice requires the sharing of information with appropriate people, and a dr who is also seeing the patient would certainly qualify as an appropriate person. You might wish to quote this section of Good Medical Practice:

"Contributing to continuity of care
65Continuity of care is important for all patients, but especially those who may struggle to navigate their healthcare journey or advocate for themselves. Continuity is particularly important when care is shared between teams, between different members of the same team, or when patients are transferred between care providers.
You must promptly share all relevant information about patients (including any reasonable adjustments and communication support preferences) with others involved in their care, within and across teams, as required." (https://www.gmc-uk.org/professional-standards/the-professional-standards/good-medical-practice/domain-3-colleagues-culture-and-safety#contributing-to-continuity-of-care)

If the cardiologist has written to the GP then they should be responding in line with GMP.

Yes, I can see all my notes on NHS app... (separate issue, a pharmacist had recorded me as having a heart condition... I don't 😀)

Thank you so much. This is super helpful and makes me feel it was worth writing the original post - despite some of the madness it generated! I appreciate you taking the time to reply.

This thread just demonstrates how many people come onto Mumsnet full of firmly offered advice, whilst not actually having the skills or knowledge to reply to the OP accurately. Glad you’ve had some excellent explanation and advice now OP.