[Closed] NHS and summary care records - whats the point!

Summary care records are all about monetary value for selling your data not about improving care

A new income stream for the NHS then. Surely very welcome in these difficult times?

I don't know, the insurers and Boots aren't going to be happy if we're selling them dodgy data with incorrect addresses and names. What if they ask for their money back?

I was in my local A&E yesterday ...

Triage ask about allergies ... to which I never know what they want.

Do they mean IgE only or are they including other immunoglobulin responses?

The triage nurse doesn't seem to understand what immunoglobulin is... but surely they should start off with my medical records instead of asking me.  I have a bad IgE reaction to an anti-biotic .. which should be in my notes given the GP had to switch anti-biotics only a couple of years ago after a (very) bad reaction.  I can't remember what the antibiotic was .. I was hallucinating at the time... surely they can get this from my medical records?...

"Have you broken a bone before?" ??? seriously FFS  how can they not know this stuff? (Its only a year since I fractured the other arm) .. how can it not be in my records?

Anyway, they decided not to X-Ray as "it would hurt more than that if it was broken" ... so another 3-4 hours of my life wasted.

<div class="bbp-reply-author">tjagain
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Summary care records are all about monetary value for selling your data not about improving care

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Got any actual evidence for this?

And Friday I had a letter from the Hospital about booking my 12 month appointment with the shoulder consultant – guess which address that went too……… good job we still have our mail redirected.

they still use post as the primary form of communication? especially for communication after several years break. The mind boggles.

Stevextc - is it really that difficult to work out what information they want when the ask you if you have any allergies?  Or are you just being awkward for the sake of it?  If you have a drug to which you have a significant adverse reaction do you think it best to rely on the outdated medical records system or for you to find out (you can request your notes at any time).  Why would you assume that the notes available in that hospital are up to date, accurate and properly categorised so that allergies are highlighted rather than buried on line 23 of page 48 - when there is seemingly well informed individual sitting in front of you who can tell you not only about the treatment in those records but potentially treatment too new or too historic to be there or which was performed out of the country or perhaps where the patient took a medication at home and never reported the ADR to their doctor (obv only minor reactions, but sometimes they get worse, and even minor reactions are best avoided if possible!).

OP - the system is terrible, poorly joined up and you’ve assumed a level of communication that doesn’t exist.  You need to tell each specialist you have moved.

but surely they should start off with my medical records instead of asking me

No because your medical records will not be up to date, you my not have been to that hospital before, your medical history can change over night.

Its standard practice to always take medical history in any setting, especially A&E.

Triage ask about allergies … to which I never know what they want.

They want to know if you’re allergic to anything. People develop allergies over time, they also can stop being as sensitive to an allergy. It’s best to confirm there’s no changes. If you have an allergy may I suggest you find out what it rather expect the healthcare attending you to just know.

I fractured a finger last year and it was more convenient to use the hospital near my parents than our local one. They had my address down as my parents home which I had left 23 years ago and 6 moves around the country ago!

but surely they should start off with my medical records instead of asking me.

But but but... Haven’t you just highlighted how untrustworthy and potentially incorrect the notes could be? And you’re then suggesting that a clinician uses the notes rather than just asking you?!? Can you see why his might happen? If you’ve noticed how unreliable medical notes are, do you really think clinicians have not noticed? Best practice is to take your own history. It’s a simple primary vs secondary source thing, really.

Anyway, they decided not to X-Ray as “it would hurt more than that if it was broken” … so another 3-4 hours of my life wasted.

WHy was that 3 hours of your life wasted?? What did you want to happen? The doctor to stamp on your wrist so that you DID actually have a break?!
You went to A+E and waited for an assessment. Not necessarily a specific treatment or outcome; but an assessment.,

You got the assessment. Yes, you waited 3-4 hours, but you got the assessment.
Job done surely?

DrP

If nothing else, threads like this reveal what a lot of people think the NHS can do, vs what it can actually do.

Being in hospital right now.

yes is can be annoying being re-asked the same info a few times. But its infinitely better than dieing of penicillin allergy, because someone forgot to tick it along the way.

To answer the OP. When used properly, the scr is very useful when I’m doing out of hours gp sessions. When I ring the nursing home or wherever about the delirious 90 year old it means I at least have access to an up to date medication record.

Hospital IT systems seem to not work well with the national spine- they need to be updated manually when people uses services rather than primary care which updates pretty much in real time as everyone uses or at least is registered with a gp. For hospitals  this doesn’t happen because I suppose there is no registered list so no guarantee that any particular patient will ever use their services again.

Progress is being made but it is very slow.

Just to add; doesn’t matter how good the IT gets, we’ll still ask you if you have any allergies. Along with a whole host of other questions you’ve been asked ten times before. Even if we have no intention of giving you any drugs. They are fairly important questions, and a hard habit to break...

May as well just get used to it.

@docrobster - thanks for the post, very informative. I wrongly assumed that the SCR was held centrally by the NHS and could be accessed by GP's and Hospitals.

It’s a habit that does not need breaking.

Sorry dirk if I mislead you. Your assumption is correct. It (the scr) is held centrally. GPs and (some bits of) hospitals can look at it. Not everyone does though.

The difference is perhaps the way the centrally held data is used to update the locally held clinical systems. If I see a patient and there is a mismatch between what is on our system and the national spine I see a little red box which I click on to tell me what the mismatch is- different phone number, address etc. I then have to pick one which overwrites the system either changing our local record or the national one. Some things like eps prescriptions can’t be processed until these mismatches are resolved. This is completely separate from scr which I can view when working out of hours but can’t edit.

Stevextc – is it really that difficult to work out what information they want when the ask you if you have any allergies?  Or are you just being awkward for the sake of it?

Yep, I asked a simple question as to if they meant IgE mediated or any immunoglobulin ... it's a simple question to a medical professional.???..

(Using this bit twice)

If you have a drug to which you have a significant adverse reaction

I have adverse reactions to many of the coatings and packing/bulk on drugs as opposed to the active ingredients.  (So it's important to me but at this point I don't want to have to reel off a list of over 100 brand specific formulations... nor indeed can I)

If you have a drug to which you have a significant adverse reaction do you think it best to rely on the outdated medical records system or for you to find out (you can request your notes at any time).  Why would you assume that the notes available in that hospital are up to date, accurate and properly categorised so that allergies are highlighted rather than buried on line 23 of page 48 –

How many billion did they spend?  Largest IT project in the world... you'd think the allergic reactions should pop up pretty automatically right along side my GP's surgery etc. that they do have.

when there is seemingly well informed individual sitting in front of you who can tell you not only about the treatment in those records but potentially treatment too new or too historic to be there or

OK, fair point on pre-existing records, I'm reasonably well informed on auto immune disorders... but frankly strains of anti-biotic I have no clue outside the major ones... I was feeling pretty unwell at the time.. I'd at least expect this gets flagged in my local NHS... rather than rely on my memory of some rather exotic anti-biotic?  (Though at this point to get back after DrP's comment see **)

which was performed out of the country

Which is most of my medical history from 18-35 ... only since other countries have different diagnostic criteria they prefer to ignore it.

or perhaps where the patient took a medication at home and never reported the ADR to their doctor (obv only minor reactions, but sometimes they get worse, and even minor reactions are best avoided if possible!).

Again, there seems to be a great reluctance to accept patients word over clinical trails.  Not to mention surely no-one has a good reaction to some drugs... (even if the outcome is good surely everyone has a crap reaction to prendisone)

You went to A+E and waited for an assessment. Not necessarily a specific treatment or outcome; but an assessment.,

You got the assessment. Yes, you waited 3-4 hours, but you got the assessment.
Job done surely?

Well, I went in with a few things ... last time when I fractured my ulna on the other arm they ended up treating me for a whole load of things I wouldn't have bothered with... (or basically would just get in the shower and scrub the dirt out with a brush then pour over some antiseptic (depending which body part as KI is nice unless you need the skin exposed - then its obviously better to use something that stings more but doesn't dye your skin or hair)

This time it seems I went in with concussion, a sore wrist and a sore trachea.... as I can't remember the actual landing I've no idea how the trachea is so sore but then this morning I have a big bruise... I also lost a lot of skin but only mostly shallow...

I'm just a dumb MTBer but surely "I can't actually remember hitting the floor" is a clue I may have blacked out and have some short term memory loss???  I'll admit at my age my memory isn't what it once was... BUT I'd remember hitting the floor hard.

Despite this I kept pointing out it was my RIGHT hand despite the left hand having a lot of missing skin.. but they kept trying to X-Ray the wrong hand and say are you sure its the left hand as the right hand is missing most of the skin...

At this point I'd rather just get major stuff done, sure its more pleasant getting a professional to clean out the dirt but using an old toothbrush to remove any scabbing then pouring over some KI or electrical grade isopropyl works as well.

Anyway... as I say back to the basics... you'd think that if you decide not to believe a patient has a pacemaker for example (to they are having problems communicating) the scar would give it away... and you wouldn't try and stick them in a MRI .. whereas for my father I had to call the ex-head of imaging then retired (who was a personal friend of my father) to get him to explain he has a pacemaker and an MRI is not an optimum imaging technique.

However many billion and they can't even get this right?

Not to mention it was a Friday night he was rushed in from the nursing home.

The nursing home sent over all his medication all prepared and blister packed but the hospital can't use it as it must come from THEIR pharmacy which is now closed until Monday.

Back to the largest and most expensive IT project in the world...

If you have a drug to which you have a significant adverse reaction do you think it best to rely on the outdated medical records system or for you to find out (you can request your notes at any time).  Why would you assume that the notes available in that hospital are up to date, accurate and properly categorised so that allergies are highlighted rather than buried on line 23 of page 48 –

How many billion did they spend?  Largest IT project in the world... you'd think the allergic reactions should pop up pretty automatically right along side my GP's surgery etc. that they do have.

when there is seemingly well informed individual sitting in front of you who can tell you not only about the treatment in those records but potentially treatment too new or too historic to be there or

OK, fair point on pre-existing records, I'm reasonably well informed on auto immune disorders... but frankly strains of anti-biotic I have no clue outside the major ones... I was feeling pretty unwell at the time.. I'd at least expect this gets flagged in my local NHS... rather than rely on my memory of some rather exotic anti-biotic?  (Though at this point to get back after DrP's comment see **)

which was performed out of the country

Which is most of my medical history from 18-35 ... only since other countries have different diagnostic criteria they prefer to ignore it.

or perhaps where the patient took a medication at home and never reported the ADR to their doctor (obv only minor reactions, but sometimes they get worse, and even minor reactions are best avoided if possible!).

Again, there seems to be a great reluctance to accept patients word over clinical trails.  Not to mention surely no-one has a good reaction to some drugs... (even if the outcome is good surely everyone has a crap reaction to prendisone)

You went to A+E and waited for an assessment. Not necessarily a specific treatment or outcome; but an assessment.,

You got the assessment. Yes, you waited 3-4 hours, but you got the assessment.
Job done surely?

Well, I went in with a few things ... last time when I fractured my ulna on the other arm they ended up treating me for a whole load of things I wouldn't have bothered with... (or basically would just get in the shower and scrub the dirt out with a brush then pour over some antiseptic (depending which body part as KI is nice unless you need the skin exposed - then its obviously better to use something that stings more but doesn't dye your skin or hair)

This time it seems I went in with concussion, a sore wrist and a sore trachea.... as I can't remember the actual landing I've no idea how the trachea is so sore but then this morning I have a big bruise... I also lost a lot of skin but only mostly shallow...

I'm just a dumb MTBer but surely "I can't actually remember hitting the floor" is a clue I may have blacked out and have some short term memory loss???  I'll admit at my age my memory isn't what it once was... BUT I'd remember hitting the floor hard.

Despite this I kept pointing out it was my RIGHT hand despite the left hand having a lot of missing skin.. but they kept trying to X-Ray the wrong hand and say are you sure its the left hand as the right hand is missing most of the skin...

At this point I'd rather just get major stuff done, sure its more pleasant getting a professional to clean out the dirt but using an old toothbrush to remove any scabbing then pouring over some KI or electrical grade isopropyl works as well.

Anyway... as I say back to the basics... you'd think that if you decide not to believe a patient has a pacemaker for example (to they are having problems communicating) the scar would give it away... and you wouldn't try and stick them in a MRI .. whereas for my father I had to call the ex-head of imaging then retired (who was a personal friend of my father) to get him to explain he has a pacemaker and an MRI is not an optimum imaging technique.

However many billion and they can't even get this right?

Not to mention it was a Friday night he was rushed in from the nursing home.

The nursing home sent over all his medication all prepared and blister packed but the hospital can't use it as it must come from THEIR pharmacy which is now closed until Monday.

Back to the worlds most expensive IT project... and they can't get basic stuff like having a pacemaker or get his prescription ???

It’s a habit that does not need breaking.

There is a difference between asking to confirm and asking because the last 10 times you asked you didn't enter it into the system.

You can ask an unconscious patient but their response is not going to be very informative.

You can ask a patient with concussion and perhaps their response is diagnostic... perhaps their inability to remember the exact spelling of some drug indicates confusion???

It (the scr) is held centrally. GPs and (some bits of) hospitals can look at it. Not everyone does though.

The difference is perhaps the way the centrally held data is used to update the locally held clinical systems. If I see a patient and there is a mismatch between what is on our system and the national spine I see a little red box which I click on to tell me what the mismatch is- different phone number, address etc. I then have to pick one which overwrites the system either changing our local record or the national one. Some things like eps prescriptions can’t be processed until these mismatches are resolved. This is completely separate from scr which I can view when working out of hours but can’t edit.

But isn't that the least important medical information?

Unless there is a geographic outbreak of something how does getting the address correct help with anything but billing?

There is a difference between asking to confirm and asking because the last 10 times you asked you didn’t enter it into the system.

Yes the difference being that they may have since developed an allergy but not informed anyone.

You can ask an unconscious patient but their response is not going to be very informative.

**** me it’s Dr Kildare.

The NHS still use three different NHS Numbers in correspondence to me. Contacted them multiple times pointing this out, still continues...

rachel

Unless there is a geographic outbreak of something how does getting the address correct help with anything but billing?

It's literally in the OP of this thread:

only to find that the wonderful NHS system still has our old address, old GP’s details....

Oh and the records were still in her Maiden name – we’ve only been married 6 years….

And Friday I had a letter from the Hospital about booking my 12 month appointment with the shoulder consultant – guess which address that went too……

Yes the difference being that they may have since developed an allergy but not informed anyone.

Other than having this diagnosed abroad though how do they actually know they developed an allergy and to what?

The point I'm making is ...

It’s literally in the OP of this thread

only to find that the wonderful NHS system still has our old address, old GP’s details….

I'm less concerned about my geographic location than the "system" actually having my up to date medical information.

I'm not against supplementing it ... it's more about the fact it's start from scratch each time.

You can ask an unconscious patient but their response is not going to be very informative.

<span style="font-size: 0.8rem;">* me it’s Dr Kildare.</span>

So if it is necessary to reconfirm allergy information every time what the * are you going to do if the patient is unconscious or otherwise unable to communicate.

Taking my father's example... you'd think multiple bypass operations, pacemaker, Parkinsons, Alzheimers and cancer might be RELEVANT medical information....  but even if he wasn't having a crisis how do you get reliable information out of a patient with advanced Alzheimers...

He could tell you pretty much anything from up to the present century... he could probably still build a MRI but he couldn't tell you what happened last week or last year.

In the same way if I'm hit on the head trying to remember a very specific and somewhat exotic anti-biotic is not very likely...

The whole process seems to rely on the memory of people who by definition are not at their best..

I've never seen my medical records... and up until recently I was charged to even request a copy..(and to be blunt the whole focus of the medical community has for decades been to prevent people seeing their own medical records). so the way this works in other countries where you can carry them around just doesn't work.

Since I know bugger all about medicine I need a professional to tell me what is relevant and what I need to be able to tell them.  I don't have access to my information... I had a prescription... it got handed over .. none advised me to make a note in case I had an adverse reaction.

When I saw my GP with the adverse reaction she took away the antibiotics ... and I would hope made a note that pops up in flashing red every time anyone accesses my records... if this isn't the case surely she should have written it down for me and advised me to take a copy next time I am in need of medical attention...

In terms of priority for a £11,000,000,000,000 Project actually making relevant patient information that is required to treat them seems to me to be higher than checking my phone number didn't change.

I'm not saying keeping up to date contact information isn't needed ... I'm saying it's surely of less medical priority than relevant medical history.

You can ask an unconscious patient but their response is not going to be very informative.

This is true. But do you think that when presented with an unconscious patient, a clinicians first thought is ‘let me just check the pooter to see what allergies they’ve got’? The A in ABC is Airway, not allergy, lol.

What you are experiencing is the fact that clinicians know that the IT system is untrustworthy.

Other than having this diagnosed abroad though how do they actually know they developed an allergy and to what?

Errrr! You ask. I developed an allergy to micropore after years of using it at work, I didn’t know until I had some applied to me. I make sure they know when asked if I have allergies. Rather unsurprisingly they didn’t know I had an allergy to it until I told them.

So if it is necessary to reconfirm allergy information every time what the **** are you going to do if the patient is unconscious or otherwise unable to communicate.

Use the drugs and equipment with very low allergy risk. It’s almost like it’s been thought of.

I developed an allergy to micropore

ZOMG! How on Earth are you going to fix the ambulances now, when the satnav/mirror/cupboard door etc drops off?!? 😉

ZOMG! How on Earth are you going to fix the ambulances now, when the satnav/mirror/cupboard door etc drops off?!?

It’s the greatest Multitool in the world. We no longer stock it thankfully.

This is true. But do you think that when presented with an unconscious patient, a clinicians first thought is ‘let me just check the pooter to see what allergies they’ve got’? The A in ABC is Airway, not allergy, lol.

Airway and Allergy are not mutually exclusive though..

What you are experiencing is the fact that clinicians know that the IT system is untrustworthy.

Yep and I'm not criticising them for checking (when possible) .. I'm saying that updating the relevant medical information should be a HUGE priority above billing information.

The other alternative is not really worse but I don't see the NHS chucking away £11Bn... and just give patients a portable medical record they can carry with them...

It might just be text on a phone or it might be in a RFID chip you can have on a bracelet etc.

Moreover I don't disagree with the claim earlier that this is about selling on your data... (as well as billing the correct part of the NHS) ... Ive seen some great stuff... transmission of my X-ray to another hospital before I arrive.. which is all cool but I could have carried it with me (or attached to me)

New hospital though and non of the medical history (or allergies) just gets lost.

6 years ago my son spent 10 days in St. Thomas's P-ICU and had to be resussed several times...

Our then local hospital had the tests they had made before he was stuck in an ambulance from St Thomas's in the opinion of the attending doctor from St Thomas's about to die unless he intubated him right there and then.

The ambulance journey took 17 mins bed to bed... (including the intubation)

His tests and medical records had still not arrived 10 days later!  When they did arrive after he'd been put on the normal ward they were "doctored" (pun intended) ... to remove the mistakes and missed SLA's the Paediatric unit had made in Kingston.  Some of this was documented.... they claimed he was seen and treated in 4 hours and this is what the records said... I had a parking ticket for 9 hours... what do they think we were doing for the other 5 hours?  Others were missing tests that had been run and the fact the nurses had moved him to a room at the far end of the corridor because his attempts at breathing was disturbing them after the Paediatric consultant had left early!   His O2 stats were not even recorded ... my partner did query at the time but the nurse said the machine must not be working properly...

So I'm fully supportive of the medical records being unreliable ... which is why they should be updated live.

Screw the KPI's... in the case of the 8 hour wait and then not seeing the consultant there was actually a good reason and possibly there was a reason for the 2nd visit to A&E taking 6 hours before we saw a Jnr Doctor. (our reason for being there was because his GP had phoned for a consult and been instructed to send us to A&E) .. but really the point is that records need to be filled in and made live or at least given to a patient (or carer).

I might be cynical but it seems to me the current focus of correcting information seems to be more about accounting than medicine.

Airway and Allergy are not mutually exclusive though..

Correct but what difference will spending time accessing their notes give over starting immediate care?

The system is an utter shambles.

I’m having yet more treatment at the moment.

One hospital STILL has not uploaded 3wks of MRI’s CAT scans, blood work, lumbar punctures, bone marrow collections and more to the system.

THREE YEARS after being there.

They STILL have not sent this info to the previous GP, let alone the new one. (Well if you call 18mths new...)

They still despite 11 requests by the consultant have not forwarded it to him to cross reference degeneration with the current position.

Theres loads more too.

This ain’t about a central record - this is DIRECT requests to them for specific information.

so I now have certain tests that can’t be run until they know the level of damage they dealing with as they do not have a definitive timescale for how long/fast it’s taken for the current level of damage to have produced the symptoms I now have due to many being sudden onset caused by other underlying degeneration.

Right now the US/Spanish/etc system of being able to literally walk in carrying your medical files would be ******* useful!

Jeepers I thought the Lothian / Scotland computer system was poor!  We have TRAK.   All your records are on it.  All scans, tests etc are on it and there are no paper records.   Of course it's far from perfect.   Gps don't have access to it.  They have their own system that does not communicate with TRAK and have to rely on letters to tell them what happened in hospital or KIS (key information summary)  but all hospitals have access to your full record at all times and this automatically produces alerts for such things as allergies and anyone with access can see everything on the record

Go for a scan it's automatically put on TRAK for all to see

Blimey your GPs can’t accesss your Scan? How prehistoric I had an MRI last year, my GP could access it the same day. They still confirm allergies though.

Assuming they are stable then I'd expect you'd probably not want to start administering steroids they are known to have adverse reactions to... ??

But I'm not really following you ...

What I don't understand is whether a patients medical history is potentially relevant or not and if it affects the treatment.  Do you just shove the bloke with the pacemaker in the full body MRI regardless or do you assess if this is perhaps a non-optimal imaging technique?

Is it more important to know which part of the NHS gets billed or is it more important to know the medical history?

My experiences are more like those of regenisis....

I go to one specialist... they do some tests.

I wait weeks/months for those test results... none knows where they are.

I don't really understand but when the GP scheduled the urgent removal of the mole she seemed to think it was pretty urgent... 2 years later the results have still not arrived... so with my limited medical knowledge I guess that means it's no longer urgent as I'd already be dead.

But don't worry... because the hospital have my GP's details and know who gets billed for the test even though they never actually delivered any results!

Right now the US/Spanish/etc system of being able to literally walk in carrying your medical files would be ******* useful!

Yep, I know exactly what you mean.... except our system is set up to prevent us ever getting the medical files.

Last X-Rays I had in France, Spain and Italy (geez I'm accident prone) I was given a copy of the x-rays

I lived in France for years and every test you get the results.. pretty much any test that can be done the same day you get the results the same day on copy with the GP.  (Obviously some tests simply take longer)

About 7yrs ago I had to have a series of tests and after each I had to see the cardiologist.

My Dr scheduled the tests 6 weeks apart to give time for the results (90% of which were same day serology)

I turned up to the second appointment and specialist told me there is no point as the results didn't arrive yet!

Rescheduled then had more tests ... and these didn't turn up either....  meanwhile I'm not all that good and keep having tachycardia and passing out... but essentially what was a series of 4 appointments with the specialist and tests in France would have taken a week, (perhaps 2)... too the best part of a year.

So if it is necessary to reconfirm allergy information every time what the **** are you going to do if the patient is unconscious or otherwise unable to communicate.

Well some people with known life-threatening allergies wear a medicalert style bracelet/necklace for that situation, but otherwise exactly the same as if the patient has never been treated with that med before.

The other alternative is not really worse but I don’t see the NHS chucking away £11Bn… and just give patients a portable medical record they can carry with them…

I don't think anyone is suggesting the system is efficient, a sensible use of money or as good as it could/should be in 2018.  A portable record is great for those who plan to use hospital facilities especially if they are the right demographic to have the necessary tech - but may be less useful for unexpected use and/or those who live chaotic lifestyles or with dementia etc. (big users of the NHS).  Patient carried notes are used in some cases for patients moving between hospitals - but its not ideal either - it means the docs spend the first 10 minutes skimming through your notes, looking at scans etc.  With electronic transfer they can already have a treatment plan in place.

Yep, I asked a simple question as to if they meant IgE mediated or any immunoglobulin … it’s a simple question to a medical professional.???..

Since I know bugger all about medicine I need a professional to tell me what is relevant and what I need to be able to tell them.

Are you sure - it sounds more like you are trying to score points.  They have no idea you have some sort of immunology knowledge so just answer the question in lay terms.  Here's how the conversation normally goes:

Medic: Are you allergic to anything?
Patient: Yes, amoxicillin.
Medic: And what happens if you take amoxicillin.
Patient: I get a red rash over my whole body.
<span style="font-size: 0.8rem;">Medic: Has it ever caused you breathing problems?
Patient: No.</span>
Medic: When did you last take it?
<span style="font-size: 0.8rem;">Patient: about 10 yrs ago.
</span>

Other than having this diagnosed abroad though how do they actually know they developed an allergy and to what?

People who have think a drug has made them ill usually know.  If you aren't sure the "allergy" probably isn't serious enough to worry about.

I have adverse reactions to many of the coatings and packing/bulk on drugs as opposed to the active ingredients.  (So it’s important to me but at this point I don’t want to have to reel off a list of over 100 brand specific formulations… nor indeed can I)

Probably easier to tell them the actual ingredient(s) you are allergic to.  If thats really not possible and you have a list of 100 formulations you might want to bring it on a piece of paper.

But isn’t that the least important medical information?

Its used for a lot of rather important things, nothing to do with billing.  e.g. making sure they are actually talking about the right patient not a different "Steve Jones", sending you follow up appointments/advice, making sure the GP has the right patient when they tell them whats wrong with you, contacting you after you leave the hospital if a problem emerges (e.g. an unusual blood result, or a consultant radiographer spots something after a junior doc sends you home), or contacting family if you things go bad.  Its probably also a useful hint about: social support on discharge, head injuries, dementia etc.

Aye Drac it's bonkers

Hospital records fully computerised and accessible to all hospital staff anywhere but not to gps.  TRAK stops much of the nonsense talked about on this thread but it not being available to gps is utterly stupid

Assuming they are stable then I’d expect you’d probably not want to start administering steroids they are known to have adverse reactions to… ??

And if they’re not stable, as in the airway needing secured or just maybe treating the reason they’re unconscious. You brought up the unconscious patient theory into this so I was hoping you knew why.

Whole thing is rather crazy TJ it should have been sorted years ago.

I'm the same as allthegear, as in I have 3 different NHS patient numbers.  All at different addresses and they still send out post to each one!   Tried getting them amalgamated into one as I needed to have access to full records when applying for my C1 license and I ended up getting a copy of each, fetching each one from where it was sent then going down to the DVLA to explain that each one was in fact me.  They refused to believe me for ages.

Apart from that inconvenience it's a bit worrying that my lists of concussions (a few..) are split over 2 sets of records, the record of when I collapsed and stopped breathing from choking is on the one with only 1 concussion on and the details of my asthma and allergies are on the third!   I think there must be a 4th record somewhere as 2 hospital visits are missing, one for CO poisoning (working on an old car) and another from when I broke my ribs.

The NHS is a great institution but the reality of dealing with it on certain things is an unmitigated nightmare.  The delay in getting my C1 license meant I very nearly lost my job!

Apart from that inconvenience it’s a bit worrying that my lists of concussions (a few..) are split over 2 sets of records, the record of when I collapsed and stopped breathing from choking is on the one with only 1 concussion on and the details of my asthma and allergies are on the third!   I think there must be a 4th record somewhere as 2 hospital visits are missing, one for CO poisoning (working on an old car) and another from when I broke my ribs.

This is what worries me.... the address is inconvenient... it would be nice if they got it right but ...

What worries me is missing medical information that I'm potentially in no position to fill in.

I've no idea what happened to tests that just went missing... nor am I in any position to follow-up.

Just taking the mole as an example... I waited 3 days as instructed then phoned the surgery EVERY day for 2 weeks... after which they told me they would contact me when the lab work was returned... that's 2+ years ago (heck might be 3)

I didn't have any number of email for the hospital lab... the GP removed the suspect mole and sent it off.

My specialist has me on bi-weekly B12 injections and my GP decided to test if I needed more or less so decided to send for some tests... (seems a good move as I find it hard to attend due to work and for some reason they won't let me self administer an intramuscular injection)

Except the results didn't come back and its over 6mo... again I rang the surgery every day after the first week... gave up after a month or two as I was thousands of miles away for work...

My surgery seem to be able to text me appointment reminders... invitations for flu jabs etc. .. what I can't understand is why the can't track tests that THEY organise???

I've got a very long list of medicines I have adverse reactions to... which I've informed them every time based on what I can remember... however this is mostly not active ingredients and brand specific.

Every time they ask me what allergies... when surely it seems more logical to start off with the list and update it except they don't even seem to have seen my medical records.

Yes I may have new allergies but the formulations may also have changed...

But its the MAJOR stuff ... "Oh you passed out and hit your head... have you passed put before?"

"Yes"

"Oh ....what happened"

"Have you read my medical notes? Its got (or should have) all the answers to the questions you are asking me "

It's got ECG traces, a whole load of test results .... a whole load of which I can't tell you the specific details of or even understand the significance of some results and what it means, if its normal or not. I really can't tell you the exact value of that exact test or the exact date from my head... surely that is the point of having medical records...

So the idea of a single record for everyone... Simple really isn't it

First what needs to be in it, well some really quite confidential information, some of which could be extremely compromising to people.

Right then Who needs access to it, well everyone really, probably includes insurers too, and anyone with an medical interest

How far back do we go? Well as far as we need to isn't it? I've seen rooms and rooms of paper records and x-ray films that should probably be on your records. The digitisation aspect is massive

It's probably one of the most complex and challenging projects going.

Hospital records fully computerised and accessible to all hospital staff anywhere but not to gps.  TRAK stops much of the nonsense talked about on this thread but it not being available to gps is utterly stupid

Oddly I know my GP can SEE x-rays taken at hospital digitally.  I don't know how they can do that or if it uses TRAK but could it be that some GPs are more switched on (either physically or metaphorically).  What I don't think is possible is for the hospital to see the GP's notes!

But its the MAJOR stuff … “Oh you passed out and hit your head… have you passed put before?”

“Yes”

“Oh ….what happened”

“Have you read my medical notes? Its got (or should have) all the answers to the questions you are asking me ”

It’s got ECG traces, a whole load of test results …. a whole load of which I can’t tell you the specific details of or even understand the significance of some results and what it means, if its normal or not. I really can’t tell you the exact value of that exact test or the exact date from my head… surely that is the point of having medical records…

They are not mutually exclusive though.  One of the issues people have with increasing use of digital tech in healthcare is the risk that the doctor forgets to actually talk to the patient.  It sounds like your notes will be reasonably lengthy - imagine sitting with the Doc for 15 minutes, him not saying a word but flicking through screens on his computer, when you could have told him the more relevant information in 60 seconds.

Well some people with known life-threatening allergies wear a medicalert style bracelet/necklace for that situation, but otherwise exactly the same as if the patient has never been treated with that med before.

Poly, that my point...

It's like there is a reset button each time...

I don’t think anyone is suggesting the system is efficient, a sensible use of money or as good as it could/should be in 2018.  A portable record is great for those who plan to use hospital facilities especially if they are the right demographic to have the necessary tech – but may be less useful for unexpected use and/or those who live chaotic lifestyles or with dementia etc. (big users of the NHS).  Patient carried notes are used in some cases for patients moving between hospitals – but its not ideal either – it means the docs spend the first 10 minutes skimming through your notes, looking at scans etc.  With electronic transfer they can already have a treatment plan in place.

I think we are agreeing.... but the technology doesn't need to be really high tech... we manage it with pets and I'm not suggesting everyone gets injected with a chip 😀 ... but it could be on a medical bracelet...

My lifestyle is pretty chaotic and I'd probably not wear it all the time... but for example it would be smart to put it on before hitting a DH trail... but mostly it could be more like wearing a watch...

Emergency response can scan and get basic medical history, any prescription drugs you are on etc. .... transmit the ID to the hospital they are taking you to... before you arrive who can then see the more detailed scans/tests that may be relevant.

Probably easier to tell them the actual ingredient(s) you are allergic to.  If thats really not possible and you have a list of 100 formulations you might want to bring it on a piece of paper.

Well, presently that's the case... which is why I'm saying what's the point in care records if I have to carry a ecap of paper?

TRAX sounds like being halfway there North of the Border...

Just back on the list ... I get issued a paper prescription drugs by the hospital and presumably that should be recorded...I get them at the hospital pharmacy... Two days later my vision is like I have someone waving a pair of glasses in front of me and I have severe nausea ...

I get an adverse reaction but I am not a doctor... I have vision problems and hallucinations so I think it's my infection...I see the GP who knows about this STUFF ... she quickly looks at the BOX and has to look up the rather exotic anti-biotic...(I'm fine with common stuff.. if it was penicillin or deviates but his is some "exotic" one according to my GP)

GP issues a paper different antibiotics and takes away the others for disposal.  I'm feeling distinctly unwell... certainly not in my right mind but pick up the prescription .. pharmacist keeps the prescription paper...

What I'm suggesting is at what point should any paper be necessary.  

I've had imaging results 'magically' transferred but not the reason for the images ... a prescription seems beyond the possibilities? "Ah we have your X-Ray here... what is it for"

Are you sure – it sounds more like you are trying to score points.

Perhaps ... I'm really just trying to make the point....

They have no idea you have some sort of immunology knowledge so just answer the question in lay terms.  Here’s how the conversation normally goes:

"It would hurt more if was broken"

"I have very little feeling in my extemities"

"Why is that"

"I have a condition"

"Do you know the name of the condition"

"Yes"

"Well what is it"

"The peripheral neuropathy is a symptom of the condition"

....

See that's where it goes and at this point I'd like to direct them towards the dexa scan results....

"I have little feeling in my extremities and a variable bone density"

"Why do you say that"

Not to mention even before I had neuropathy I had multiple broken bones that mostly I was advised "It would hurt more than that if it was broken"

or a consultant radiographer spots something after a junior doc sends you home

Except that doesn't seem to happen.. what seems to happen is Jnr Doc sends me home... 3 weeks later I'm still not able to walk properly and go back... <span style="text-decoration: underline;">by chance</span> (luck of the draw) I see the consultant who <span style="text-decoration: underline;">using the same X-Rays</span> spots 3 broken bones in my foot and ankle but my this time after being told to walk on it have also got a loft of soft and connective tissue damage.

To me this seems pretty basic stuff for an £11Bn project.

HMRC and DVLA seems to mostly manage - they don't issue me a paper tax disc or not identify me from my driver number or registration... the passport office doesn't seem to have a problem finding my records..  If I fail to renew or SORN early I get a warning etc. my MOT is digital... the paper copy is just a secondary copy...

The English NHS system seems to literally have digitised a paper process... that is they didn't redesign the process for digital data but literally put some "digital" bits in...

If there isn't a big button for Allergies or a classification system to allow them to quickly locate the relevant medical history then the whole design is wrong.  If they can't hit a button for "current medication" then the design is wrong...

but mostly the problem (from reading what those who use it have said) seems to be the inability to update ??? There seems some disconnect between the way records should be maintained in a digital system vs a paper system... and no-one trusts the digital system (perhaps leading it it not being updated)

The question of what is the point of summary care records ... the point I'm trying to make is if they can't be trusted then there is no point.

What’s the point of a summary care record when it’s fairly obvious that the NHS’s computer system doesn’t work.

Don't really want to waste time weighing in on this thread because it's immensely complex, but the statement from the OP above is fundamentally flawed because there is no "NHS computer system". There are many hundreds of systems (possibly thousands). Interoperability is a major challenge.

“The peripheral neuropathy is a symptom of the condition”

Are you an alcoholic?

Are you an alcoholic?

Sadly I can no longer really tolerate alcohol.. 🙁

I've no idea why or if its even related to my other health issues but I can't really drink enough to get merry (2-3 pints) without paying for it for 2-3 days.. so I usually don't bother.  (It's not like I can go and have a few pints with my mates and if I do go out I usually volunteer to drive)

The question at the surgery is always how many units do you drink per week ... which is a bit of nonsense for me as most weeks the answer is zero but I'm not teetotal or anything and have a glass (sometimes 2) of wine as I can't drink beer anyway 🙁 . (I had 3-4 glasses last week)

Sadly I can no longer really tolerate alcohol..

Well I guess it not kidney disease either then, we could be here all night.

Don’t really want to waste time weighing in on this thread because it’s immensely complex, but the statement from the OP above is fundamentally flawed because there is no “NHS computer system”. There are many hundreds of systems (possibly thousands). Interoperability is a major challenge.

£11Bn + overspend went into creating a system .. which does indeed seem to be many hundreds or thousands of non-interoperable systems... but recognising this surely what they need to do is fix the interfaces and processes to update the system.

How can the system of issuing NHS numbers even create duplicates so people have multiple unique ID's?

If these are inherited then why is there no priority to clean them up and prevent new ones??

I can't imagine HMRC or DVLA having the same problem ...even if its not 100% due to fraud?

How can my surgery be able to SMS me... and be able to set appointments and tests at the hospital but the results get returned by post (or in my case often never returned ???)

If you take DVLA they have completely switched from a paper based process to a digital process... road tax/SORN, MOT... but they still manage to allow you to apply by post or queue at the nearest DVLA if you want to...

How can the prescription process (for example) not be digital from start to end?  It's 2018... FFS!

NHS records are many levels of magnitude more complex than dvla

I think some of you really have no idea how complex and huge the databases need to be

NHS records are many levels of magnitude more complex than dvla

I think some of you really have no idea how complex and huge the databases need to be

Compared to DVLA they might be complex and large but compared to a lot of scientific and industrial systems and databases they are not especially large or complex.

Imaging seems big... but try oil and gas seismic ..

Patient records seem complex but try a oil well... from its planning to drilling to production and maintainance to abandonment.  Each well will produce GB per day or hour... each seismic survey is 100's of TB before it is even processed into multiple versions... and of course they use MRI and CT ... but the data is tiny compared to most of the data sets.

There are some State owned companies (I can't name for obvious reasons) that are running digital copies of their previous paper based processes even today... they have duplicate ID's... semi paper processes etc.

It is actually the paper process that cripples them... or more accurately the digitisation of their existing paper process to try and create digital process.

The NHS seems to function on paper.(or film).. even if that paper is also transmitted digitally...

I remember asking a friend who was RPO for a major trust why they still use film X-Rays and subject patients to high and un-nessassay levels of radiation (a decade ago) and he said because they need to store the films...

It looks to me that the NHS has digitised a paper process ???

It's not just about the size and complexity of the data. There are very complex considerations around data security, legitimate access, patient safety, care pathways, government regulation and reporting, to name just a few.

One area not yet discussed is that the summary record, or indeed the entire record, is only as good as the person who readcodes the conditions/results/consultations makes them. The possibility of any individuals record being comprehensive and accurate........

one of my current roles working in two GP surgeries involves both readcoding/scanning paper based communications from hospitals ( and there are a surprising number that still come in paper form) and readcoding electronic communications. I also summarise new patient records that come into the practices which involves reconciling the paper records with the electronic record that (should) have come via the GP2GP electronic transfer.

it is quite eyopening/shocking how many of the records that come electronically are incomplete or non-existent.  By incomplete I mean significant events that are in the paper record have not been coded.for example allergies, significant diagnoses such as TIA's or dementia or operations such as hip replacements. This often happens to people who move surgeries regularly for whatever reason and the paperwork catches up (eventually ) but has not been added to the transferred electronic record. Also some of the systems used are not very compatable so the records are degraded. Patients that come from Scotland or Wales to England often don't have an electronic record that is compatable so it has to be recompiled from the paper records ( which can take months to arrive) and this new record is of necessity usually only the significant events, not individual consultations. It Is this stage that is often done poorly. I would estimate one record in four that I summarise requires modifying

regarding the comparison with oil well seismic records. Are there approximately 50million records being updated in some cases on a weekly basis?

Stevextc

Sorry dude but you really don't understand the level of complexity

I don't really know how to describe it but I use TRAK daily

Each patient record has many sections often with multiple subsections.  Data entered in one section will often automatically be entered in another.  Each data entry has to have a full audit trail and all previous entries must remain accessible

Different staff groups have different levels of access and permissions

Many entries will create alerts and prompt actions

For example: I admit a patient

I am prompted to fill a series of questionnaires to assess infection control risk 12 questions in three sections.  Depending on the answers it will then prompt actions.   Say it shows MRSA risk. It will prompt me to run an MRSA screen.   So I go and take the three test swabs.   Once I have these I go back into TRAK to order the tests. After completing another questionnaire with a series of prompts I order the relevant tests and it produces Barcode labels for the swabs. Simultaneously TRAK will alert the lab that the swabs will be arriving, put an alert on the patients results page.

If the swab is positive it will alert infection control. Put a warning signal on thir demographic page which is then duplicated on the header of every page of their record

This is for one routine test for one patient and this is a simple part of it

Everything has to be searchable horizontally, vertically and over time

More levels of complexity

Not only are there multiple levels of access i. e I can read all of it.  I can write in some parts. I can order some tests but not others etc and there will be 30+ levels but also if I attempt to access people s recordd I do not have a need to that access request will set up an alert.  For example accessing my families record or a patient not in my service area that will set off an alert.  The lists of allowable access is individual to every user

Adding another voice and a 'you don't understand the level of complexity' note agreeing with TJ.

I work in NHS Informatics, and deal with this sort of stuff on a daily basis. What people get wrong, as I did before I started, is thinking that 'the NHS' is a single, big, coherent organisation. It's not, it's lots of little organisations that fight with each other all the damn time, that all came from different places and different bases, and that all think they know just how everyone else should operate. I see this first hand every damn day.

A case in point when it comes to systems. We're lucky, as a city, that our GP's only have one of two systems they use, EMIS or SystemOne - when I started, I think there were there were 9 different GP systems in the city. On top of that, because GP practices are independent businesses, they can choose to buy any additional hardware and software they like - ECGs, blood pressure monitors, etc - but the software doesn't always talk to the main GP system, or needs admin rights we don't grant, or a software update to a core system kills a loophole the 3rd party stuff has been using. Or, the one I've had fun with recently, the third party hardware needs a serial port connection to operate, and doesn't work over USB, so when you replace the ancient PC for a modern one the hardware can't be connected. And this is just in-house: the main Hospital trust we work with have approximately 100 different computer systems across 5 or more sites and however many departments, because each department holds their own budget and can choose their own systems. And that might mean the same department in two different sites (say, two A&E units) use completely different systems. Those systems - both the similar and the wildly different - don't necessarily talk to each other, because a lot of them are old and were never designed to. Some don't talk to the Spine, some are entirely standalone. Bed booking systems like PAS are completely separate to treatment systems, which are again separate to things like the pathology and radiology systems. The degree to which they'll talk to GP systems is it's own minefield - we can get pathology results through electronically, but not necessarily radiology. And when pathology's hardware fails - a system through which we push 10,000 blood tests a day - and it takes over a month to get the hardware repaired and the system up again, the blood tests get outsourced to other local hospital trusts who use completely different IT systems so results can't be transmitted electronically, and have to be sent on paper and manually input. Deep joy.

Someone else touched on coding, and that's another minefield. Those two GP systems I mention use two different coding sets, so your record in one system had to be 'translated' if you change from a GP on one system to the other. Theoretically that will all change when we move to SNOMED coding in the near future, but that had a completely different hierarchy structure, so all our coders will have to retrain and start from scratch - at point one of our system providers was talking about not having a dual-run period, it was going to be an instant switchover. You can imagine how much joy that would be. Even in just two code sets, GPS and practices code differently, even when we've given them a recommended coding schema.

Someone higher up than me, and with a better understanding of it all, gave the estimate that our city, between Primary and Secondary care and all the auxiliary and tertiary functions, generated in the region of 400 terabytes of data per day. And that's a conservative estimate of a single city.

So, you talk about £11bn like it should reform a whole national 'system': £11bn wouldn't even get our city onto a single unified platform, because you'd have to replace pretty much all the existing hardware and software across the board, and then find the time to train every single member of staff across, in my case, 103 GP practices in 135 locations in Leeds, plus a Hospitals trust over I think 5 or 6 sites, plus Community Healthcare across, again I think, 3 or 4, plus an Ambulance trust, plus, plus... And that's before you add in the complexity of our northern-most sites who tend to refer to Harrogate hospitals, or deal with systems interaction with the private healthcare providers, or any of the GPs and private companies operating under the Any Qualified Provider (AQP) contracts - who strictly should be using their own equipment and systems, not ours. And it would be an immensely political game, not just at the Westminster level, because to politicians of a'll parties the NHS is just another bargaining chop with the public. At a local level every lead GP, every practice manager, and every department head would have to have their say on what a system should do, what it needs to provide, how it needs to do it - some of them because of a preference and knowledge, some because a good friend of theirs just happens to be the Chief Exec of a company that makes things great piece of software... And none of them would agree with the others, because they've been partners in the past and fallen out, or because they have differing ideas, or just because they plain don't like each other, or because, or because. The final chosen system provider themselves, should it ever get as far as a tender stage, would then have their say on whether it can or can't be done, and how - as an example, one of our system providers was trying to tell us that they wouldn't support coding for the Accessible Information Standard, and that's a legally mandated thing. And then they'd have to mandate the level of support, both hardware and software, nationally. Not outsource abroad, preferably.

Stevextc, you talk about the NHS being on 'digital paper', and you're right, it is. Because a private oil company, if it's doing well, can afford to sink some of it's profit into a new company-wide system. The NHS cannot, because the money is simply not there. Why do you think WannaCry last year hit sites and trusts still running Windows XP? Because the funding wasn't there to upgrade those systems.

So, going back to the original question about summary care records. The reason they don't do what you think they should do is that they're still in their infancy, half of the systems don't talk to them, and every city and trust argues about what should and shouldn't be held in the record, never mind who had a right of access. The emergency level stuff - allergies and medications - is a good start, but is coded to differing degrees of accuracy and still needs to be checked to the best of a staff member's ability each time because litigation culture is taking over, and if they don't ask and you suffer, people stay trying to sue. There are projects in the works to try and improve these things but they're geographic: We have an input into a Leeds Care Record, held by the hospital trust, and the comms is generally there to get probably 85% of the systems city-wide to talk to it. But that's just for the city, the complexity of scaling it up to, say West Yorkshire wide is another exponential step. Convincing staff members to access it and use it - both at GP and Hospital sites - is another battle, and one that can't be won simply....

...aaaaa breathe...

At least in Scotland we don't have the fake competition and all hospitals Co operate. Gps are still independent though

I find even within the same GP practice the records are not available, not made or lost. A number of times I've mentioned the previous visit for something and they've got no idea what I'm talking about, and that's using whatever computer system they've got (in the last couple of years).

Hospitals though. I've been given paper records and CD of x-rays to take to my local hospital because they don't communicate and told me they don't trust sending it in the post. Local hospital seems to do most stuff on paper in big files and struggled to find my records for a while at fracture clinic (that's after struggling to even find a doctor in a busy clinic with no doctors). Send the stuff to my GP in the post. Not sure they got it, but previous hospital visits the records have been lost.

If the summary care stuff actually makes this work then I can see the point but not sure it does and it seems it's a different system in each area. It sounds also like it's not necessarily used even if available as I guess old habits die hard.

Complexity of integrating systems I can understand. Not that I know much about NHS systems, but coming from the software world doing integration work, I understand the complexity of even seemingly simple integrations. Worse when each client install with the same system have them set up in such mind bogglingly different ways that it's practically a custom integration for each one.

To clarify, because a couple of people have made comments about x-rays etc.

SCR won't hold imaging stuff, it's designed so a minimum dataset is there holding the stuff any clinician treating you in an emergency might need to know. Only the stuff that might genuinely save your life

From NHS Digital's own page:

"At a minimum, the SCR holds important information about;

• current medication
• allergies and details of any previous bad reactions to medicines
• the name, address, date of birth and NHS number of the patient

The patient can also choose to include additional information in the SCR, such as details of long-term conditions, significant medical history, or specific communications needs."

The stuff I've italicized is it's because that's in the extended record, it's is subject to it having been recorded or coded properly at your GP practice, and is also subject to having a GP who knows how to use SCR properly. NHS-D boast that 98% of practices are now using SCR, but the stats for input and views are fairly low - as they say, creation of the record is automatic, viewing of it isn't mandatory and a lot of GP's don't bother. If the practice has your full record why would they glance at a 1 paragraph summary?

Person Held Records, now they might make more difference in the long term. Ask a GP whether you can have access to your Detail Coded Record on their system and watch them cringe...

To be fair, I think there's a few valid reasons they might cringe - firstly, a lot of it probably won't make a lot of sense to the layman (I'm a layman who works in practices every day, and a lot of it don't make a lot of sense to me!), but it'd be easy to read things without a full understanding and reach an incorrect conclusion. Secondly, in a similar vein, there might be things in your record that a practice might validly not want to release to you - if you were a victim of domestic abuse, for example, and had visited your GP about it, if you then subsequently requested access to your record, there might be concerns that you may have been coerced into requesting it to find out if you'd been speaking to anyone about it. Thirdly, historic data occasionally contained colloquialisms written in an age before electronic data sharing was even a possibility - I doubt if much of it would have been summarised into the electronic record, but I can imagine there might be issues if you requested your record then the practice had to explain what FLK, GLM, NFN, etc, meant (funny-looking kid, good-looking mum, normal for Norwich).

Your first two are dead-on Pondo. We've also had queries from it Safeguarding teams about the right of access of parents to their child's record, if the child is coded as vulnerable or if there's any suspicion of abuse. Particularly if said child has things like contraceptive pills on their record etc.

The third point unfortunately is irrelevant, the electronic record you can get a hold of won't contain any free text input, only the details that are clinically coded, so the acronyms and the doctors opinion of you won't be listed unless they've coded you as, say, hypochondriac, which you'd hope they wouldn't be adding in without a formal psychiatric diagnosis.

Aaa, ok - so that PHR thing is purely what's been coded? Interesting - although I bet you're finding some GPs are honking about not having their personal, professional opinions included, in a "that Read code doesn't tell the whole story" kind of way! 🙂

Yup, and you can bet they're also the ones who code/ask for things to be coded at the highest point of the hierarchy, with the minimum level of detail, to save time. Because they can view the free text...

All of the transferable systems run on coding details only - aside from hospital referral letters, which might contain text detail if a GP wrote them themselves. If they left it to their secretaries, it will be minimum detail and coded detail only.

Stevextc, you talk about the NHS being on ‘digital paper’, and you’re right, it is. Because a private oil company, if it’s doing well, can afford to sink some of it’s profit into a new company-wide system. The NHS cannot, because the money is simply not there. Why do you think WannaCry last year hit sites and trusts still running Windows XP? Because the funding wasn’t there to upgrade those systems.

Weirdly it's the cost drivers when they are not doing well that drives the progress.  (Most have been looking at 50% redundancy over the last 5 yrs not because of automation but costs and have been forced to do things right)

I've seen it all... and some State Owned Companies are ahead of private ...and hence I recognise the digitise the paper process not rewrite the process for digital then create the systems to support it.

What I see base don comments is what the NHS has done...  trying to digitise a paper based process is not only ultimately pointless but costs more and takes longer.

A company I'm currently writing a report for just rewrote processes across a whole part of their business specifically to move it into digital. This will create an island initially but one with interfaces... and I'm currently writing up the plan for 2nd part of the business.... (literally right now)...

They previously started digitizing paper process... luckily only in one area of the business...

What happened is someone with enough power (Vice President) simply said "rewrite the processes"

DECADES of process was completely rewritten in about 3 months... with only 10 people because they just had the VP rubber stamp and tell all the moaners to shut up or find another job.

Its a huge success with those on the ground floor and those at the top level... lots of middle managers are pissed because they now have to do actual work... and are held to account when they used to just delay by not signing physical bits of paper

Problem is that model doesn't work for the NHS, they're like a conglomeration of thousands of independent companies all in the same industry, all funded in similar ways but ultimately independant. My area's Primary Care and Pyro touched on it earlier talkingvabout clinical systems, used to be eight or ten to choose from, there's still four in England (although Microtest are only in a handful amd INPS are shrinking) but no-one can go to a practice and say you must now use Emis/SystmOne/made-up interlinked new system.

And that's just one aspect of hundreds of systems in thousands of practices - my knowledge of secondary is limited but what I've seen of that makes Prinary Care look like an artisan baker compared to Warburtons.

The complex picture painted above is my experience but also doesn't take into account the motives of people and organisations involved  Just for example where CSUs (could be other NHS organisations) choose different or bespoke systems compared to near neighbouring NHS teams, all makes them and their teams a little more indispensable. When you are talking about all the disparate provides opening up to (ahem) "frictionless" interoperability then obviously there is the conflict that they want to protect their customer base.

One way forward is for aggregators to provide the ability for patients to choose to share their complete record as and when with the clinicians they want to and this is being done in some NHS areas and overseas:

http://www.patientsknowbest.com/

I would bet that TRAK is one of the biggest and most complex systems worldwide

There are complexities unimaginable to anyone who does not use it

All paper records have been scanned onto it. Every test from wound swabs to mri scans are on it in full. Images in HD.  That is Every test in the last ten years.   Every note made in every patient notes.  I will try to find out the size

TRAK is a bought in system used in a lot of places but customised for us

Is that NHS Scotland -wide, TJ, or specific to your trust? It's not one I've heard of, but I'm in Primary Care Informatics so not hugely familiar with hospitals systems. We do a lot of work with our local hospital trust, though, and I'm always a bit bemused by the sheer number of different systems they have.

We had a handful of GP sites on INPS, on three different versions of EMIS, and on a free others I can't remember now, but we're down to two and it's an 80/20 split, and getting closer to 90/10. Another local PCT (as-was) 'encouraged' all their practices onto a single system by funding it for the first few years, but GPSOC means we can't really do that. Pedlad's comment is even more complicated for us, the CSU failed so we're with a private company won who the tender, and frankly they're not great. Data that has to remain in the NHS for processing goes to a neighbouring CSU (North East), but the failed unit covered the whole of West and South Yorkshire and Bassetlaw. Now we're covered by a private company that win the support tender, pretty to their negotiations and top-up fees, and it's a ballache.

Synergy, Premier, Ganymede, might be three of the others, INPS until recently I think had a couple of different solutions. 🙂

Of the two remaining big players, one has a reputation for being very unhelpful when it comes to playing with others.

Pyro

It's NHS Lothian that I know for sure.   We don't have the competing trust nonsense in Scotland and I think it's also Scotland wide or is being rolled out Scotland wide.  It's only hospital tho and community nursing.    Not gps