Having to wait for illness to reveal itself

[ebikeerwidnes]

This stuff about "previous" this and test results that are not mentioned

makes it clear that the NHS App (and the browser access to the same data) is really important

Via that I have been able to look directly at a lot of test results that I previously had to depend on the doctor to see and mention
They are clearly busy
but they do sometimes just not mention things that might be better if you knew about


I have an appointment to talk to our GP ina few weeks to go through several things - some of them are specifically about test results that I didn;t know about before

As some may know - but not everyone - the hospitals do NOT update the NHS app databae with test results they get
as a result - any important tests that I think I need I try to get through teh GP - so I CAN see them

there has been an announcement recently that hospital test results and details of appointments will go on the App "soon"

but having known people who worked in hospital IT departments - that could be a way off!!



but I would encourage people to look at the NHS App test results and check what the results mean - sometimes a result "in bounds" is not as OK as it sounds!!


I do worry about people who do not have the ability/knowledge/circumstance to check for themselves!!!

 

[presta]

I feel you. What can you say? Times and knowledge change. Medical knowledge increases. Individual GPs, medics differ and vary. Some keep up as a matter of course, others stick with what they know (knew). It's a lottery in the field innit?

But whilst it's all well and good to be philosophical, it sucks to be on the receiving end.

No, it's not a lottery, and it's not about knowledge changing either. When I was diagnosed with AF, they lied about that, too.

In August 2012 I was taken in to A&E by ambulance, ECGs were printed, marked with the diagnosis, signed by the consultant, and a letter written to my GP informing her. I have copies of the ECGs, and letter, and I also have an audio recording of the whole proceedings, from the paramedic knocking on the door right through to my discharge from A&E.

When I got to cardiology outpatients they repeatedly said that they had never seen anything wrong, never seen any abnormal ECGs, and that I had never been to A&E. I have a recording of the cardiologist walking into the room and saying "I am aware that you were taken to A&E", then denying the ECGs. When I asked why he hadn't fetched the ECGs from A&E, the then told me there was no record of me being there, contradicting what he'd said 17 minutes earlier. He turned to the computer and showed me a blank page as proof there was no record. I didn't know at the time, but I've been told since, that cardiology are on a different computer system to A&E, so the cardiologist knew that the screen he was showing me wasn't the evidence he was passing it off as. They wrote and told my GP this, I have copies of the letters, but she didn't challenge any of it, even though she knew it wasn't true.

I'd never have taken to recording them in the first place if I hadn't grown tired of a lifetime of being lied to. In the last 60-odd years I've been lied to well over 40 times by the NHS, I keep a list of them all.

 

[ebikeerwidnes]

No, it's not a lottery, and it's not about knowledge changing either. When I was diagnosed with AF, they lied about that, too.

In August 2012 I was taken in to A&E by ambulance, ECGs were printed, marked with the diagnosis, signed by the consultant, and a letter written to my GP informing her. I have copies of the ECGs, and letter, and I also have an audio recording of the whole proceedings, from the paramedic knocking on the door right through to my discharge from A&E.

When I got to cardiology outpatients they repeatedly said that they had never seen anything wrong, never seen any abnormal ECGs, and that I had never been to A&E. I have a recording of the cardiologist walking into the room and saying "I am aware that you were taken to A&E", then denying the ECGs. When I asked why he hadn't fetched the ECGs from A&E, the then told me there was no record of me being there, contradicting what he'd said 17 minutes earlier. He turned to the computer and showed me a blank page as proof there was no record. I didn't know at the time, but I've been told since, that cardiology are on a different computer system to A&E, so the cardiologist knew that the screen he was showing me wasn't the evidence he was passing it off as. They wrote and told my GP this, I have copies of the letters, but she didn't challenge any of it, even though she knew it wasn't true.

I'd never have taken to recording them in the first place if I hadn't grown tired of a lifetime of being lied to. In the last 60-odd years I've been lied to well over 40 times by the NHS, I keep a list of them all.

This concept of being in a hospital in front of a doctor
and that doctor NOT having access to ALL known medical information about you

is just horrendous to me

If I get taken to A&E due to something happening
I do not want then doctor to be working off half the data they need

for example - I had a stroke (TIA) just over a year ago

but not it looks like it isn;t

so if the same happens again - I need the doctor to know that it wasn;t AND WHY they think is was something else
if it is worse next time - and my wife is not with me for some reason - then they could end up treating me wrongly and hence not addressing the actual issue which may be nutrient levels and not a blood problem

It is rather pathetic when we have had computers for a fair while now and any business that had not got a centralised database would be bankrupt by now!

 

[yello]

No, it's not a lottery, and it's not about knowledge changing either

My apologies, I got the wrong end of the stick and was trying to be understanding.

 

[All uphill]

Are you confident your symptoms are indicative of a physical health problem?

Could you be experiencing physical symptoms resulting from mental health issues?

I ask because I experienced episodes of deep fatigue and chest pains in early 2025. At that time I had had a diagnosis of a life-threatening heart problem. I had previously spent years continuing to work despite traumatic events in my life.

Just a year ago the heart diagnosis was withdrawn, my heart is good for my age. I was horrified when my GP suggested I was suffering from years of trauma, and a lack of support, but she was right

I was fortunate to be able to get some help from a skilled psychotherapist and I'm glad to say the fatigue and chest pains have gone.

 

[nogoodnamesleft]

As some may know - but not everyone - the hospitals do NOT update the NHS app databae with test results they get
as a result - any important tests that I think I need I try to get through teh GP - so I CAN see them

there has been an announcement recently that hospital test results and details of appointments will go on the App "soon"

but having known people who worked in hospital IT departments - that could be a way off!!

I guess there are a wide range as to what constitutes a "Hospital Test Result". My personal experience is that GPs request tests and if they refer you on to a Consultant that consultant might request further tests.

Some time back now but Consultants I have seen have written a long form letter to the GP with their conclusions and the basis for their conclusions which has included summary of relevant aspects of test results.

Normally the consultant has cc'd me a copy of their letter so in practice I get to read the letter before my GP as GP doesn't get to see it until practice admin have scanned the printed letter and added it to my record, then alerted the GP who will have other people in waiting room before they get to read it.

When in a different NHS area caring for my Mum, I'd always ask the consultant to cc my Mum on any letters they send to her GP but for me where I live asking hasn't proved necessary.

On one occasion the consultant letter did include along the lines of "tests for <x> identified a small <y> though of a size unlikely to cause any issues" and rather than have a GP repeat the comment I called the hospital and requested a brief off-the-record phone call with a departmental specialist about that "small <y>" - the hospital was very helpful, booked a call time and they phoned me and sorted.

 

[yello]

@nogoodnamesleft that's given some thoughts, thank you.

My understanding is that fatigue can have so many causes that without a diagnosis or identified cause one person's experiences pprobably don't relate to somebody else's experiences.

Indeed it seems fatigue is a multipurpose symptom. It must be a minefield for a doc to even know where to start - at the beginning and chalk off the possibilities? And of course 'I feel like sh*t' doesn't actually help much either, even if it is succinct.

I'm going to guess there are people who can't be bothered chasing a diagnosis. Who just accept and put up with their problems. It's a balance and a personal call. Tbh, I am debating that - accepting I'll never know why and simply rolling with it.

 

[yello]

Could you be experiencing physical symptoms resulting from mental health issues?

It is entirely possible, and something I seriously consider. I am an anxious person so I'm sure that has some physical manifestations.

 

[ebikeerwidnes]

I guess there are a wide range as to what constitutes a "Hospital Test Result". My personal experience is that GPs request tests and if they refer you on to a Consultant that consultant might request further tests.

Some time back now but Consultants I have seen have written a long form letter to the GP with their conclusions and the basis for their conclusions which has included summary of relevant aspects of test results.

Normally the consultant has cc'd me a copy of their letter so in practice I get to read the letter before my GP as GP doesn't get to see it until practice admin have scanned the printed letter and added it to my record, then alerted the GP who will have other people in waiting room before they get to read it.

When in a different NHS area caring for my Mum, I'd always ask the consultant to cc my Mum on any letters they send to her GP but for me where I live asking hasn't proved necessary.

On one occasion the consultant letter did include along the lines of "tests for <x> identified a small <y> though of a size unlikely to cause any issues" and rather than have a GP repeat the comment I called the hospital and requested a brief off-the-record phone call with a departmental specialist about that "small <y>" - the hospital was very helpful, booked a call time and they phoned me and sorted.

Yes that can happen

My objection is based on seeing a Consultant about my Coeliac Disease
the blood test measures TTg (dunno exactly what it means) which should go from 0-6
mine was 128 - which is just the highest the machine displays

I got it down to 8 based on diet
then went to see the consultant who ordered another
then sent a message saying it was "OK"

but other people had said that 8 was the best I could get it to

so "ok" mean nothing

I had to get a test through the GP to discover that it was down to 1 - so I was doing what I needed to

but as I didn;t have the hospital numbers then I couldn't see what OK meant

anyway - sorry - waffling - I do that when I am annoyed by things!

 

[raleighnut]

No, it's not a lottery, and it's not about knowledge changing either. When I was diagnosed with AF, they lied about that, too.

In August 2012 I was taken in to A&E by ambulance, ECGs were printed, marked with the diagnosis, signed by the consultant, and a letter written to my GP informing her. I have copies of the ECGs, and letter, and I also have an audio recording of the whole proceedings, from the paramedic knocking on the door right through to my discharge from A&E.

When I got to cardiology outpatients they repeatedly said that they had never seen anything wrong, never seen any abnormal ECGs, and that I had never been to A&E. I have a recording of the cardiologist walking into the room and saying "I am aware that you were taken to A&E", then denying the ECGs. When I asked why he hadn't fetched the ECGs from A&E, the then told me there was no record of me being there, contradicting what he'd said 17 minutes earlier. He turned to the computer and showed me a blank page as proof there was no record. I didn't know at the time, but I've been told since, that cardiology are on a different computer system to A&E, so the cardiologist knew that the screen he was showing me wasn't the evidence he was passing it off as. They wrote and told my GP this, I have copies of the letters, but she didn't challenge any of it, even though she knew it wasn't true.

I'd never have taken to recording them in the first place if I hadn't grown tired of a lifetime of being lied to. In the last 60-odd years I've been lied to well over 40 times by the NHS, I keep a list of them all.

I've had a few, I have a problem in my neck ad the consutant wanted an MRI scan done but I told him I couldn't have one, he wrote a snotty letter to my GP saying I don't know who told me that but I have a large metal Implant (Intramedullary Nail) in my Femur, said consultant never asked me why I couldn't have a trip in the 'tunnel of doom' (MRI) but he simply hadn't read my medical history.
Consultants tend to concentrate on their own fields to the exclusion of other health issues.

 

[nogoodnamesleft]

Are you confident your symptoms are indicative of a physical health problem?

Could you be experiencing physical symptoms resulting from mental health issues?

It is entirely possible, and something I seriously consider. I am an anxious person so I'm sure that has some physical manifestations.

As a general comment (ie unrelated to OPs challenges, etc.) many talk about exercise releasing endorphins that improve mood. So in a non medical thought process lower mood -> no cycling -> no endorphin boost -> lower mood -> etc. but this is not based on medical knowledge, just me wondering out loud.

 

[ebikeerwidnes]

I've had a few, I have a problem in my neck ad the consutant wanted an MRI scan done but I told him I couldn't have one, he wrote a snotty letter to my GP saying I don't know who told me that but I have a large metal Implant (Intramedullary Nail) in my Femur, said consultant never asked me why I couldn't have a trip in the 'tunnel of doom' (MRI) but he simply hadn't read my medical history.
Consultants tend to concentrate on their own fields to the exclusion of other health issues.

That is just terrible

Imagine if you were unconscious - or had memory problems

when I had an apparent TIA they did an MRI
but when I went into A&E I could hardly remember my wife's name and was pleased to have remembered 2 of the 3 grand kids names

I could easily have forgotten I had a metal lump somewhere and in cases like that you reply on them knowing your medical history
especially if you are in the hospital that you normally go to

but they don;t!!!

 

[yello]

just me wondering out loud.

I encourage wondering out loud. It leads to interesting places. There's a time and a place for academic rigor too of course but simply chasing our own thoughts can tease out some threads to apply the rigor to.

 

[nogoodnamesleft]

Noting my experiences are all fairly historic as I've been fortunate and not seen a GP (or medic) for a couple of years.

Yes that can happen

My objection is based on seeing a Consultant about my Coeliac Disease
the blood test measures TTg (dunno exactly what it means) which should go from 0-6
mine was 128 - which is just the highest the machine displays

I got it down to 8 based on diet
then went to see the consultant who ordered another
then sent a message saying it was "OK"

but other people had said that 8 was the best I could get it to

so "ok" mean nothing

I had to get a test through the GP to discover that it was down to 1 - so I was doing what I needed to

but as I didn;t have the hospital numbers then I couldn't see what OK meant

anyway - sorry - waffling - I do that when I am annoyed by things!

I've become a bit sceptical about anything from GPs once your condition is at a level for referral to a consultant.

(Sorry, long anecdotal story) I was referred to a Consultant after a blood test requested by a GP was slightly out (and nobody knows quite why the specific test was requested as it was the wrong one in relation to my visit). At same time GP requested "whole body CT scan" and barium swallow tests. Saw consultant who examined me, looked over tests, discussed with me and said GP was wrong and I'm fine and nothing more needed and he wrote a polite letter to GP clearly stating "no further tests of checks required". But GP decided to start on more tests one of which was trivially outside "normal" so in the end I had to ask for a case review with a different GP to discuss "this has to stop and I have to be cleared" (I felt fine, original minor issue had cleared long ago). 2nd GP commented that the last test "outside normal" was at a level they'd normally ignore but "compromise I do the requested 2nd test then that will be all and nothing further. Presumably for one GP to cancel a test requested by a different GP (same practice) could mean admin, justifications, paperwork ....

I didn't raise complaints as weird thing was they were being OTT too thorough which I considered far better to just dismissing something serious without proper investigation.

 

[nogoodnamesleft]

That is just terrible

Imagine if you were unconscious - or had memory problems

Getting way off OP's question (sorry) but something I've done on my iPhone is to thoroughly fill in the emergency medical stuff (that anybody can access without unlocking phone. I'm sure Android must have similar systems.

I've included far more than contact, next of kin, admin ID'y stuff but added chronic conditions, some medication I must never be given (for non-medical reasons, just groups of medication I am not prepared to take for psychological reasons, etc).