Medical history/diagnoses

[JetTail]

I'm just wondering whether anyone is under different hospital trusts for different conditions?
My local hospital trust covers 3 London Hospitals and sharing within that trust is readily available between the hospitals (blood results/attendances at A&E/admissions).
However, I am also under a different hospital trust for exploration/monitoring of one diagnosis.
Obviously the GP can see all letters, but they are not necessarily proactive about joining the dots.
My concern is that on my list of diagnoses at the local hospital trust, one diagnosis is not recorded (as it was diagnosed following an admission to the other trust as the ambulance brought me there as nearest hospital was on divert) and they are indeed not aware of it even being investigated.
I wonder how things operate on that basis if anyone else is in a similar situation? I'm thinking along the lines of the importance of all diagnoses being available at A&E should I ever be unconscious on arrival?

I’m in a similar situation, although on the border between 2 U.K. countries so added complication because NHS Scotland and NHS England take ages to talk to each other and send notifications, but the conditions I’m monitored for at one hospital wouldn’t have life changing consequences if it took the other hospital a couple of days to find out. I do have them listed on my phone emergency screen, DH would hopefully be able to tell them or the admittance notification the GP gets would hopefully result in contact.

Is it possible the other conditions could be listed on your patient records? It’s been a while so I can’t remember what they ask on admittance.

Yes I'm in this position. I have a folder with all my notes for various conditions in, which I take to appointments but obviously that wouldn't help in an emergency. I've got my medications listed in my phone under the ICE section so I'd hope any medical professionals who might look at that would join the dots.

What you are describing is very typical of London!

Is the missing diagnosis something that A+E would absolutely need to know if you were unconscious? Because TBH that is a very serious situation which has a fairly standard emergency approach, some diagnoses might be v important to know but a lot would be totally irrelevant until a lot later.

@AnnaMagnani

What you are describing is very typical of London!

Is the missing diagnosis something that A+E would absolutely need to know if you were unconscious? Because TBH that is a very serious situation which has a fairly standard emergency approach, some diagnoses might be v important to know but a lot would be totally irrelevant until a lot later.

Well that's something that I do not know as the diagnoses is of something which is present and being monitored/examined but not really known to be causing anything currently. I'm not on any treatment for it as yet. I'm not really sure, whether the presence of these things (adrenal nodules) is anything of concern, because as yet it's not clear whether 'they' (or 'it' - depending on which letter you read) is benign or not. The other main issue that I'm under a consultant for at the local hospital - that team is aware of these other investigations as some of the symptoms could possibly be caused by either and/or indeed affected by one another. My concern is about A&E. I've tried to tell the doctors at my local hospital about the other thingy, but it has yet to be added to my records.

I'm just a little concerned that the doctors are not in full possession of records of all admissions, diagnoses, tests, results, A&E attendances etc. but that they think that they are.

So for e.g. last year, I had one admission to the hospital outside of my local trust.
I've also had a couple of admissions to my local trust. Abdominal pain would have been the main symptom for all admissions and abnormalities in bloods were found.

I just think it's a bit remiss that one hospital thinks that they have all information when they don't.

Having been diagnosed at the other hospital has been a headache from start to finish and I eventually had to change GP surgeries in order to get a doctor to follow up on the advice of the consultant (they had difficulty accessing the records from the other hospital and said that they hadn't received letters and a whole load of stress). When I changed GP surgeries in August last year, the new GP took me off a medication without informing me. The new surgery only got access to my full medical records in January. So a fucking shit load of stress was caused by this other hospital having been involved and the GPs dropping the ball. Both of them!!!

Once upon a time GPs usually had time to get across complicated cases and to act as a lynchpin. They are way too busy now fire fighting. Similarly hospital doctors are entrenched in their own specialties and busy catching up with all the missed work. .I think that it is now up to you as the patient to ensure that everyone has all relevant information.

I kind of thought that docs in A&E never know anything about your medical history except what they can diagnose themselves or what you tell them about. They can't look at any of your records without your permission, but more-over, the NHS has no way to tell them electronically.

Happy to be told I'm wrong. Was fairly sure that only GPs get to see the full record. Rest are flying blind mostly.

A+E docs can see anything from the hospital you are at, plus the minimal info that is on the Spine. In reality they are working fast and are not sitting down to wade through pages and pages of notes though. It's make a decision and move on.

Also they are well used to seeing patients they no absolutely nothing about who can tell them nothing and starting from scratch.

It looks to me like the Spine would have all recent prescriptions, but wouldn't have a lot of information about chronic conditions or anything merely advised on, or treated without prescriptions (like maybe nothing about physio or psychological therapy). Is that correct?

It's the fact that the A&E doctors believe that they have a complete history that worries me. It was news to one of the A&E doctors recently. I had been to A&E the previous night and asked him to check those as they couldn't get bloods from me (I'm notoriously difficult to get blood from). He came back and said that I hadn't been to A&E the previous night! I explained that I had but that I was brought to another trust altogether and he then exclaimed 'so you go to different A&Es???!!!!' I explained that the paramedics will bring you to the one with least time for handover, unless it's life threatening and then they have to bring you to the closest. He didn't know this at all.

@AnnaMagnani It's not the fact that they don't have a complete history. It's that they believe they have! So you're attending A&E repeatedly for the same condition but you're only brought to your nearest hospital 50% of the time, they think that the condition is not as bad as it is i.e. that you've only required hospitalisation 3 times, when in reality, in the preceeding 2 weeks, you might have been brought to hospital 6 times.

I don’t think A&E doctors even remotely believe they have the complete information. If you have a very critical need for information to be shared and/or you have a condition where you may be unconscious, I’d suggest a medic alert bracelet.
Please don’t panic, A&E are very used to treating people with limited to no information.

I'm not panicking. I'm merely stating that if the doctors do not know that they do not have full access to your records, then there is a problem!

If I was to draw an analogy. Say for example you're a teacher in a school and a new pupil is sent enrolled. You are given some information about their history or diagnoses for e.g. dyslexia/adhd/ being examined for autism spectrum, but you're not given all of the information. The information which you are not privy to is that this new pupil is allergic to peanuts and that their parents are not exemplary and the child was in fact frequently showing up with suspicious bruising. You therefore work on the assumption that you know all that there is to know. So when you report a new instance of bruising or something, you think that this is the first time?

Information sharing is possibly widespread within the school system, but it should be widespread within the NHS also.

I'm not concerned so much about the lack of information sharing. What I'm more concerned about is that doctors do not know that they do not have access to ALL YOUR RECORDS. They assume that they have.

I have been under the care of various hospital both in the same trust and different ones. Also different departments in the same building. I keep a separate folder for each condition and a spread sheet summary that I update regularly, print out and take with me to appointments. I give the doctor a copy to keep and they are always grateful. I also take copies of consultant's letters and tell them to keep them. It is the only way to manage several conditions.
I also request printouts of my blood tests, keep a list of medications and give anybody who wants one a copy. I also know all the potential drug interactions, which has been very useful on more than one occasion.
I have no idea how people who can't manage all this actually survive!

I have actually given the letters (photocopied) referring to the diagnosis from the different trust to paramedics to ask that it be added to my diagnoses. It hasn't been. My local hospital trust refuses to print out blood results as they say that when they try to print it, it spews out hundreds of pages. The other trusts will! Now, that may be nonsense or reality. They even seem to be reticent to give me specific results. Like for example they'll state, your inflammatory markers are quite high. I'll ask for the specific result. They won't have it! They'll tell me that they'll give it to me but they don't. I've requested my recent notes under GDPR and one of the statements from one trip to A&E and subsequent admission, states that 'pt very demanding of staff' or something similar lol. Now believe me, the only time that I bother nurses as they have to be the most difficult people to get hold of, would be if a doctor had prescribed a medication, or said that they would, such as pain medication, then I would probably ask on a half hourly repeat basis whether it had been prescribed yet and whether I could get it! As, often it's prescribed but the nurses don't give it to you! Also, when you ring the nurse's bell, very often it will be a HCA who can't do whatever it is that you need who responds.

Btw, I'm very impressed with your updated spreadsheet lol. I think A&E would call the psychiatric team if I rocked up with an UpToDate spreadsheet 😂

How do you do that? The ICE thing? I don't know what that is? Incidentally, I don't think paramedics know that they can access emergency contacts by pressing the side buttons on the phone simultaneously as they have asked me to do it for them when I was not really in a position to and I just said it's under the emergency contacts. They didn't know how to do it. Maybe it's not standard practice or something with so many variations of phones.

I'm in this position. I live on the border of two counties but have attended hospitals in 3 counties for various problems and the information at one hospital is not available to the others. I keep info about my diagnoses under ICE in my phone and have information cards from two medical charities in my handbag, which detail my two main medical problems.

I'm under 3 different hospitals across 2 areas
On my phone in the notes app I have a list of diagnosis plus meds and the health app filled in so that can be accessed with no passcode (iPhone)

This is what I have (not bothered about anyone seeing my medical things!) and I screenshot it and saved it as my phone Lock Screen so it's visible at all times

I have an iphone. Could you tell me how to do that please? I'm a bit tech-stupid though, so a step by step account would be good.

That's clever to have your history there but my concern would be all and sundry knowing my extensive list of ailments!

So settings, health, medical ID, and make sure it says sharing Lock Screen
That means people can access it but it's not saved on your Lock Screen
Then in notes I have everything typed up so I can just wave my phone at hospitals rather than talk through it all!