hi just looking at my GP records and especially documents and whilst was impressed by something called a e-RS letter which is sent with the referral letter the GP sends out (I guess) and includes every key medical issue since birth plus other bits, they missed an important bit.
they missed off my single most significant diagnosis (in my mind) of my congenital heart defect. I remember going in and handing in my angiogram report as it was handed to me by cardiologist after angio for my GP. I did have the angio at a different hospital / trust (that the GP can’t send or receive letter / reports).
But it just doesn’t appear anywhere and they’ve sent off a referral to a sleep clinic consultant to another hospital in another trust)without mentioning it at all! As the congenital heart defect causes restriction of blood flow it might have some bearing.
I will call them to make aware and get it fixed tomorrow morning,
“ Slightly fuming” as it’s not great if the sleep consultant doesn’t have the right information whether they see it as relevant or not. But I’ve got 40weeks at least to get it rectified as that’s the waiting time. 😊
but also means the cardiologist I’m seeing later this week also has incomplete information 🤨 I shall take copies of all missing docs to appt.
My myocardial bridge has been missed off reports before as well, especially A&E reports where they state there is no myocardial bridging despite them seeing it on my angiogram 🤦🏽♀️
I think it’s that entire issue of it being considered benign, they just choose to completely miss it off. It is frustrating when they do that, especially when we feel that it is such a key piece of information about our health.
Glad you’ll be on the phone to them tomorrow to sort it.
Sorry to hear that, that’s frustrating and dismissive of them to not note it at least. Yep I aim to be the “You are Number 1 in the queue” person when I phone. 😁
if you hang on in there for long enough you might very well be.
I agree they should put everything in your notes. What is more it is probably some’clerk’ who I puts things onto the computer and not a doc and so the decision to leave it out might not be taken by a medic
I was about to comment with the same thing - that it's considered benign by so many doctors, they hardly deem it worth mentioning 🙄 Even though we know that once symptomatic, it's far from benign!
I noticed that a period of several years where during my teens I kept fainting and was referred for various tests was completely missing from my records when I requested the details to provide to PIP.
Unfortunately for me, they couldn’t find the root cause in my teens and told me to eat more salt and carry things like TUC biscuits or a chocolate bar at all times to boost my blood pressure in “an emergency” 😂🙄
I sympathise with your frustration, especially when you feel it’s something of value to be raised.
Sending best wishes for your visit to the sleep clinic, even if it’s 40 weeks away 🙂
Soap
Hello
I always check and I am always phoning up because several things have been wrong before
Also it is quite interesting the notes they put on your records both Secretaries and Doctors pit on mine anything they feel like putting and not what has actually been said again I phone up and let them know not that it makes much difference
I bet it was a shock for you but good that you picked up on it and an now get it rectified and have time to do it to x
I agree and its true.Doctors record what they want which is not always the exact record of my consultations.I have asked for addendums to be put in my records where they are untrue.assumptions etc.
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Hello
It is amazing what gets put down sometimes isn't it ?
Well at least I know it is not just me that has this problem and I am glad you put them right when they mess yours up
I hope otherwise you are keeping well x
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Hello Bekind-28
I was only able to put a few right.I am not great because gp is not taking everything seriously and is fixated with IBS when i have never presented with it IBS symptoms.
This the latest assumption re unaddressed and undiagnosed abdominal distension,allegedly from a gastroenterologist to GP -"you have had extensive investigations "and " there will be no further investigations or hospital appointments"(going to take this to the top)and you can tryRifaximin which is to do with bacteria in the small bowel "(not exact words)and no investigation done re this,I googled this med to see what it was and it said:-
Rifaximin is used to treat traveller's diarrhea that is caused by a bacteria called Escherichia coli. It is also used to prevent hepatic encephalopathy, which is a condition that occurs when your liver does not work normally. This medicine is also used to treat irritable bowel syndrome with diarrhea.
How can GP say this when recent abdominal CT Scan was said to be normal-nothing to say liver was not workng normally and NOT tested and again assumption of IBS I have never had.
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Hello
A lot of the time when they do not know what is wrong they say IBS
My Surgeon actually was on about when she was tested as she was having troubles and they just said IBS to her she actually then swore in our conversation we were having about them saying that to her and said they say that when they don't know what it is !
How Doctors can do a lot of things now a days I will never know I think quite a few of us are having problems with that one
I am sorry you are gong through this I know how it feels when something is wrong and you feel you are getting fobbed of not nice at all but I hope it gets resolved somehow and meantime you can always come and talk with us
Have you or are you a member of the IBS Community on here even though you don't feel yu have it a lot have felt the same on there maybe worth posting or having a look
I will pop you the link on if you have not seen it x
Hi ,no I am not a member of the IBS community,.thank you I will join up.It all started when my CA125 tests for ovarian cancer -around 2009 -11 -were negative and gp from that assumed IBS but did not inform me he assumed IBS.
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Hello
I am so sorry to hear this but they have a lot of experience I think on that Community and they just might have some answers to help you
I feel your pain - the records are appalling: I know of several people on the vitamin B12 forum who have checked theirs and also found them to be inaccurate.
Several of us had apparently been given "smoking cessation advice", despite having never smoked, because the surgeries get points, and therefore funding, for doing that so they add it to random patient's notes!
That's all very well but I feel it is important that anyone dealing with me knows that I do everything I possibly can to be as healthy as possible and I'm still ill despite my best efforts.
I did however find out that I was diagnosed as Coeliac when I was 3 and, apparently because a nurse was dismissive about it at the time, my mother didn't do anything about it and I was never told! 95% of my health issues now could be as a result of it so I've asked for it to be investigated! I just wish that when I have presented with many linked conditions over the last 5 decades, someone might have looked and considered it, so potentially I could have been spared decades of suffering and lots of now permanent damage!
Several vital things that have been investigated and diagnosed/ruled out are missing from my records too. When I asked to have them put on they, rightly, said I'd need documentary evidence - like you have - to get the notes ammended, but I was relying on my GP records to have them so can't get anywhere.
Another thing I have been frustrated by is the moving goalposts regarding access - sometimes you are allowed to see them and other times you're not - and the inconsistencies have increased my mistrust of the system, which I know is flawed and not as confidential as it's supposed to be.
you are entitled to have copies of your medical records free of charge.you will need to complete an SAR and return it to your GP or hospital if you want your hospital records.
Just read this about the smoking thing. My discharge notes after mechsnical valve and aorta replacement surgery says I am a smoker-may have tried a cigarette twice in my life as a teenager-how does that make me a smoker ? I was really taken aback by this. It is like saying 'you caused your heart problems because you smoke' when I was born with a severe congenital problem. Frustrating
It's an awful feeling, isn't it!I totally sympathise. At least you know it's only because they are desperately trying to claw every bit of funding out of the system that they can but it's still horrible when it's at your expense, isn't it.
Sometimes such omissions or inaccuracies are due to poor systems in place, but often getting it right comes down to individuals and their thoroughness and attention to detail. Unfortunately - in my view - that’s often lacking…
think you are very right, the receptionists are the least friendliest I’ve ever come across bar one. They don’t smile, make no eye contact and you have to repeat everything several times. You have to talk to tops of heads. I’m not surprised now.
It can be different dependent on where you are but I use the NHS App and the GP surgery have to set up something / do something initially so best to start with speaking to your surgery receptionists. Good luck.
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Hospital records - contact the PALS service for your hospital trust and they will be able to help.
Just to make them sit up you need to ask if they are aware of your heart transplant and take a few seconds before admitting you are joking. As you say, omitting the congenital heart defect seems a bit basic.
As others have mentioned sometimes their findings aren't mentioned on reports if they are classed as benign which can be frustrating if you become symptomatic or if your trying to find out what the root cause of the heart condition is. Also if it's mentioned on your notes then this may help with further investigations or rule out other test causing delays in treatment and cost etc. My angiogram results came back stating all was ok apart from me having a congenital heart defect which I never knew about but no further information or call to explain it. I had to call the BHF to get some clarification on what it is which I then found out might be causing me the problems I'm experiencing.
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definitely frustrating it’s hard enough, with clear and accurate records. The report in question shows my congenital defect is symptomatic so very frustrating . Hope you find answers - they are just as important as treatment, to be acknowledged and understood. That’s what I’ve learnt over the last year or so.
Sign up for Emis and then you get all your results online. It is a bit fiddly to set up but a good techy person,not me ,did mine. Then you get scans,blood tests x rays and most other things.
Good morning fishface101 and all our club members. The system is broken! I sympathise as I had a routine two year check up ECHO back in 2021 and have never seen any results on my records. Does anyone else have the same problem as I have? I go onto the NHS app to view any test results, which are quite detailed, but if you go onto Patient access then very often the results don’t match up, ie: quite a few results are missing from the patient access site! I would love to think that they were the same in both sites! Am I missing something? Hope you get it sorted out.
no not missing anything, someone isn’t managing information management well.
I don’t always look at GP records but noticed my sick note was available online to download and then noticed the missing report / letter and inaccurate referral letters as a result. hence I’ve learned my lesson now.
I always check my on line record. I always smile to myself when it states "patient informed" because I never am. I think it is wrong of my surgery to assume that I check my own records. Some of my friends don't even know about on line access. I wish you well.
there is a lack of info (no pun intended) and my surgery particularly assume everyone is happy to be in the dark / wait to be told and they are surprised when you ask for more information. They don’t promote access. Wish you well too!
Hi.I am under Southampton General Hospital after my emergency aortic dissection and open heart surgery plus aortic valve replacement. I recently had a mini stroke and follow up echocardiogram + a 6 day heart monitor at the Royal Bournemouth Hospital. When I asked if the results would be sent to Southampton I was told no as they are in a different authority, but they can request the results if they want them! (Not sure how if they don't know about the stroke!).
Anyway, I took it on myself to send copies of my stroke discharge document, echocardiogram result letter and the letter re the 6 day heart monitor to the Cardiac Dept at Southampton. I feel this is vital for them to be updated as this could be an issue in view of the dissection and related problems!
Can I also add that a couple of years ago, Boots Opticians asked my dr to refer me to an Ophthalmic specialist, which they did. However, Boots were never sent a copy of the Opthalmists report - again I gave Boots a copy of it! Surely they should have had this info sent to them by the drs as it was Boots who asked for me to be referred!!!
Is it just me or does common sense disappear when dealing with health authorities?
it disappears definitely. I’ve been making calls today to see how I can provide missing docs to the two consultants in question! But having read your response, I know realise my local cardiologist won’t have the images of my angiogram as the angio was done at a different hospital. Luckily I had got a cd for my records but I’ve overlooked getting it to the local cardiologist 😒
Hi Fishface101, first time contribution to this forum. I have also been told I have a myocardial bridge found on angiogram. I seem to be experiencing similar responses regarding this in that it's sometimes mentioned as a possible cause of my chest pain when just sitting and other doctors seem totally dismissive of it. I had a myocardial perfusion test but haven't had results, but have a cardiology appointment at the end of the month. Hoping for more info on what is causing my chest pain but at the moment not very optimistic.
hello welcome to the forum as it’s your first post and welcome to the lonely hearts club called myocardial bridges, your experiencing what we all with bridges have and that’s lack of knowledge and assumption benign on the part of many doctors. If you look at my profile I think you’ll see my previous posts and responses and there is information in there if you’re interested. Or do a search of posts. Come back if don’t find. 😊
Because little is known, you have to educate them. It may not be the cause but it shouldn’t be assumed it’s not as should be excluded if especially nothing else obvious and especially if you have unobstructed arteries. Microvascular issues can be at play too (with and as a result of or without the bridge) and that too is hard to get diagnosed as many will tell you on here. Good luck I hope you get answers.
I can't even get online records. Last week I needed a copy of a consultant's letter and some test results. I was told he only way I could do it was to fill in a form on their website, provide a legal photo for ID and take it in in person. They do not automatically put records online. I haven't tried the NHS App because I don't use a phone for Apps. It's too small to see. Anyone know if I can use the NHS One on a laptop?
I am going to say yes you can because even though I called it an app I actually use website on iPad. Search for website called nhsapp.service.nhs.uk. It should work.
I think there is no consistent approach to records access and varies between geographical area and within it. Thought it was one NHS😉
Yes, looks like it depends on each GP surgery what they allow you to see. I found it- it looks very involved with photos and/ or pass codes from GP to actually sign up. Not even sure i have a photo they'd accept. Driving licence looks nothing like me ; have no passport, bus pass is long out of date. Maybe blue badge
Though I have Patient Access it seems only for blood results and prescriptions, so doesn’t include referral letters from or to Gp surgery…you have the chance to query what your Gp has written before you see the specialist clinician. Last two times I saw a consultant ( one private on zoom), the referral letter from Gp was so inaccurate I wondered if they were reading someone else’s notes ( or just making it up with symptom ‘clues’ that ticked boxes to guarantee getting a referral…one was to Sleep Apnoea clinic….because there were no appointments I did tests privately via Hope2Sleep charity).
Very inconsistent what we all have access to. I don’t get to see referrals beforehand but I’ll give my GP his dues he sends them very quickly - albeit Some info missing! Sleep apnea - I’m going to have to wait for NHS! 😊
OMG so many replies and surprise surprise there seems to be a theme 😡 inaccuracies and omissions. My surgery has not even participated in putting notes on any of the patient or nhs apps. I only have my notes from a litigation issue 5 years ago. However I found a comment a nurse put on there from my younger years as quite off offensive and totally one side opinion.
just doesn’t feel like we have a say even though it’s about us! 😟
I find the online system very useful and also very stressful. To get the full effect of the nhs app you need to be signed up to your doctors surgery as well. However I don't see any of the hospital tests or records, I had a full blood test two weeks ago which the cardiologist asked for but I carnt see it. Of cause I saw the letter from Barts about a heart transplant. That sent me to another planet. However we cleared that up two weeks ago. She has to look into all possibilities, but thats possibly for the future. She then said you look well I will see you in a year. Of into the big wide world I go. Trouble is I have got to perform better on the next cardio stress test. I thought I done ok last time. 7 minutes. I am trying to find out what the maximum they put the bike up to. And the stages it goes up in. Trying to practice. Practice make perfect. Or is that cheating. But if the body will not go past 7 minutes then so be it.
Yes like you I find it useful. I order my repeat meds and signed up to surgery one also. But they have elected not to put patient info on any site !! Does make you wonder why 🤨🤨 particularly when nurses are allowed to make personal comments on them !! But seems there is no cohesion between hospitals and GP info anyway let alone with us patients 🤣🤣
Yes it is a system which is useful, many times I send my doctor messages. Saves phoning up, if I just want some information. But I would like to see my hospital information. It was like when I went to A and e. I got the report which was sent to the doctor. But on it the report it said I had anxiety and deaf. So I though that's not me, but what happened was many years ago my firm sent me, via my doctor, to have my hearing checked out. Any way he said at the hospital I was either born with partial deafness at a particular frequency. Or I could have got glue ear when young. But I carnt see the report. But at least I can go back to 1971 for my tonsils.
SAR is a subject access request under General Data Protection Rules but may apply to England and Wales maybe????? Guaranteed to have your own Scottish version - might be called Data Protection Rules. So your the subject as the records relate to you and your making a request to access them.
If you were to contact the operator for the hospital you attend they might be able to help with who deals with getting copies of your records?
PALs is patient liaison service like when people want to make complaints but also tend to deal with records as well.
Hi how weird is your post I've linked my son's gp records to mine to manage his health and have also found that they have not added one of his two heart conditions. The one that the consultant feels is of the most concern at the moment. I'm waiting for GP surgery manager to call me back. Its very strange as it is clearly stated on the letter from the hospital. Good luck getting it sorted 👍🏾
it is definitely worth getting it sorted because when I had mine updated as result of above my sleep study appointment came through for April 2023 rather than November as they’d previously said would be a 40 week wait. I’m just guessing having now seen my congenital heart defect they moved me forward.
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Tests 
what happens if restriction on blood flow continues?
Cold hands and feet - any answers? 
