I spotted this in the Guardian, probably a not unfamiliar story, about coroners who have raised concerns about unnecessary deaths due to the way NHS shares medical records ( or more often doesn't).
IT problems, out of date, poorly maintained systems, different systems that dont communicate with each other due to compatibility problems. So different trusts might use different systems, there is no single joined up method.
It also reminded me that we have many NHS patients who still cant fully access their medical records. So its not just medics that are struggling to access vital data but also patients.
To a much lesser degree, NHS records only contain NHS data. Any other info is not included.
For example, when we get blood tests done by the NHS it's usually only TSH and occasionally freeT4, but many of us get them done by other companies so that we can get freeT3 and other tests as well. These are not recorded on our NHS records. Also if we get private prescriptions these are not recorded on our NHS records. Result - when I went into hospital in the spring they didn't know that I take levo and liothyronine. It took me several days to get them prescribed.
I keep a spreadsheet of my blood test results but the hospital only has a record of the TSH taken at my annual bloods. I was in hospital again recently and was told that my thyroid meds were too high. I explained that the suppressed TSH was due to my taking liothyronine as well as levo. They clearly didn't know what I was talking about so I said I would mention it to my private doctor.
There are many other treatments which don't get onto our NHS records. Such as osteopaths, physiotherapy, etc. etc. Personally I keep a summary of my medical history with dates. It makes it easier to answer questions such as 'When did such and such happen' and I can show it to any new doctor I see.
I recently went into hospital for knee replacement. Took in my T3 and I had as predicted the ‘discussion’ with the people dishing the meds. Apparently it’s not on my records despite being prescribed by my local hospital endo. I had said it would be a problem and he’d assured me they’d be on my records! Anyway I managed to persuade the nurse that I’d take it and divided my dose. Thankfully they didn’t test my TSH which has been low for 20 + years.
However I did get a chance to talk to the hospital pharmacist and educate him on poor conversion, low TSH and splitting T3 doses!
I thought I had got used to this particularly when being referred out of my home Trust, but this week an Endo.out of Trust found old records going back over 22 years, by interrogating a number of databases, that those inside my Trust never found…proving on diagnosis I was indeed ‘overtly hypothyroid’ and years of me complaining about symptoms had been subclinical hypothyroidism , that he said should not have been ignored. His unsatisfactory explanation was to do with paper medical records at GPs, I can only presume he got into lab.records somehow.
That’s very interesting. When I was diagnosed about three years ago I requested my medical records and hospital records. An MI twenty years before and all the tests and interventions were available. I have all the copies. However when I recently requested a cardiology appointment, the hospital records had disappeared. Cardiology had no history to reflect on. This is ‘normal’. The records had been expunged because they were over twenty years old. However I also had the results of a thyroid test done at the time by cardiology. Knowing what I know now, the lab had also done a T4 test. They only did that then if the TSH was shown to be dodgy. So ‘they’ knew then I was likely subclinical. Nothing done. Nothing wrong with me. However the MI followed after being assured in no certain terms that it would not. Again a note in hospital file another 16 years later found to be fully hypo. I was still not informed until another three or so years had passed. This is is a massive problem for the NHS. It’s incompetence knows no bounds.
I was getting a blood draw the other day. The phlebotomist was under pressure. Getting blood from a stone - that’s me. This was a private blood test. However I had to stop the phlebotomist in his tracks. He was about to pierce me in an area not swabbed with alcohol. I was brave enough to stop him (I have no idea how important this is). I don’t trust anyone ‘medical’ now.
I can’t believe how ‘brave’ I am becoming. A bit late but ……
I think that living patients records should not be expunged. You never know when they might be needed. I suppose it lets them off the hook on many instances.
Yes, it seems very odd to remove med.histories just because they are 20 years old. Unfortunately the endo.the other day was doing everything so quickly I couldn’t exactly follow what he was doing, he had tilted the screen for me to see…. got the impression the database he was on went back further than that, and confirmed figures I had already noted from 2002 ( when I now know subclinical hypothyroid), the new info. re. overt hypo. was from 2006, so 18 years ago. I remember asking if records went back further, as I wondered if I had got thyroid problems related to twin pregnancy in 1991 but nothing there for that, but I suspect that could also relate to another GP surgery not bothering to test for it! Instead of just destroying old histories they could at least ask patients if they want to collect the records themselves!
We are the only country in Europe to ha e stopped swabbing before injecting. Recently there was a woman who died as a consequence. Thr coroner said NHS practises should be reviewed. I've started swabbing again for my b12 jabs....have to buy my own due to the no.policy on the nhs.
Didn't realise that about being only country not to. I've been concerned since restarting b12 injections that my arm isn't wiped anymore, so I wash area thoroughly with an olive oil based soap beforehand.
I too read that recently about a lady who'd tragically died after a b12 injection due to Strep A, I believe, having not had arm cleaned first. It seemed to state research showed wiping first didn't help, but have no ides the extent of that research, and if other countries still are, that's a worry!
My understanding is that it is not proven that it's unnecessary to swab thr area. More cost saving than anything....words from a GP. I don't know if the lady who died was immune supressed. I just feel it's not worth the risk even if its low. I self inject B12 so bought my own swabs. They are not expensive.
To me it seems madness we go to phlebotomy and they're taking blood no swabs are used yet there will be people there who are not well or their health is compromised.
I had to stop a nurse once too, because she wasn't going to wipe the blood draw spot. I insisted. She thought I was weird but so what. I live in Poland now, it's normal here to swab first (and they always tell you to press down on the spot for at least 5 minutes after to prevent bruising.) (I never heard that in the UK.) Stay brave and get bolder! We need to educated the 'educated'!
Yes, NHS Scotland even worse as they don't use the NHS app. My daughter has just finished Uni and had tests there in September. Can't get the results until she goes back in person as practice refuse to email.
Another issue is that even the NHS records that do exist and are accessible to a GP (for example) will trivialise patients' problems. If the patient describes something from their medical history doctors will often assume that the patient is lying and/or exaggerating because the medical history summary doesn't mention the severity of problems.
Quite agree! After getting the NHS App few months ago, I'm surprised about the lack of info about how we're actually feeling that gets recorded really. I can say a myriad of symptoms when going for b12 inj's, to find 'patient well' recorded on app. Instead things like 'wore gloves' & countless others that seem unecessary.
If a Dr decides to review these cases in future, its not going to help! I have written letters in past when fighting for diagnosis to have on notes as evidence, but been advised now Drs don't have time for occasional letters-make an appointment. Trouble is, to see same Dr it's often a months wait!
Good news: you are not alone. We have the same disorder and incoherence over here in the States. Occasionally one “Trust” (our “improved” version 🙄) will have a database hack to read records in a disparate competing system (three cheers for the efficiency of competition and free choice), but in 99.3% of instances of patient interaction, there’s too much data to browse and they just ask the patient to explain (over and over ad nauseam), “Why are you here? What’s going on?”
Under our vastly superior system, It’s essential to be able to recite a lifetime medical history and spar verbally (but politely) with overworked fried-brained medical professionals. It helps to bring another person to the interactions for advocacy. Hard copies of clinical research publications, lab results and other diagnostic data sometimes earn a glance from the doctor.
I once had a specialist take the published articles I bought and read through them hungrily. A bright spot.
“To err is human. To survive is awesome.” — RockyPath
Sounds very familiar.....except the doctor bird is a rare species rarely seen in the UK. Very shy camouflages itself by hiding in the bullrishes but may be tempted to talk at far distances for short durations. It's favoured communication though is the alarm call of text messages that require no direct response so you must stay quiet if you receive one. 🤣😂
That's the doctor bird everywhere these days. They prefer telephone consults but if live, hide behind their computers. I recently was at a specialist who had the patient's chair set up at least 2 metres from the desk. I started to move it closer and he asked me to leave it. Probably didn't want me to see him working off his diagnostic algorithm on his computer. Hardly any doctors actually diagnose anymore - they just punch in a few symptoms and pick something that comes up, give you the suggested prescription and say come back in month (or if they don't want to see you again, usually the case, they don't say anything.) The medical system has gone to the dogs everywhere!
Or print off a page from Dr Google and hand it to you. " gee thanks Doc, you shouldn't have, really you shouldn't have". I know a lot of people are concerned about AI but sometimes I feel I'd rather deal with a computer than some of the doctors I've come across. Better artificial intelligence than no intelligence.
Ha, and doctors are so sarcastic when they think we are consulting "Dr. Google"! At least if I inform myself online I can make decisions or check things out further. AI might be the way of the future (or even the present) but every time I get the AI assistant online or on a company phone I am amazed how frustratingly daft they are. AI unfortunately comes with the bias (or limitations) of the one who programmed it. However, if it helps... BTW, great name. We should all be sparking sunshine to those around us.
IT bod here 👋 There's a balance. But once that genie's out of the bottle there's no going back.
Yes, the systems should be able to talk to each other but they also need to have the controls and security in place. That includes not being able to access records through the back door, avoiding “when and where records were snooped on” (from the Guardian article).
Fujitsu staff were able to dial into the Horizon system. Test systems with test data should be used but, in practice, this isn't always the case. Are you happy with that? I'm not.
Security isn't a one off exercise. The company I work for has a team dedicated to trying to hack us. I would be surprised if the NHS does. If the data's stolen, it can be accessed by anyone. Are you happy with that? I'm not. Would anyone with, say, HIV/AIDS, mental health problems, history of suicide attempts, abortions ... anything that may have a stigma attached be happy with that?
Palantir was awarded the contract for the Federated Data Platform. They're not the most ethical of companies. Here's the BMJ's view: bmj.com/content/386/bmj.q1712
And just because companies are collecting medical data, it doesn't mean they're trustworthy: bbc.co.uk/news/articles/cz7...
On data sharing, I've opted out. It's a personal choice. The pseudo-anonymisation could still identify me. I would want to continue to be able to do that.
The Guardian article mentions the tragic case of the three year old who died of a streptococcal infection. Why didn't his mother mention his Downs Symdrome?
Yes I've opted , the NHS I'm afraid, like nearly all public services goes for the cheapest options, they wont stump up the cash to pay for the best contracts, whether IT or otherwise. They wont pay for the best programmers or IT security experts.
There have been too many data breaches in the news for my peace of mind. Plus Palantir can take a running jump. There are too many politicans who think all our health infrastructure problems will just be cured by more digital improvements and AI. It smacks of desperation.
Actually my trust in the nhs is irreparably broken. The nhs has been taken over completely by management and business. The nhs has strict policies that completely ignore and over rule clinical needs....even from their own specialists and top consultants. The business model is in charge.....our GP surgeries are run on profit models (how the partners are paid from profits they make.....usually 3 or 4 of them in each practise). They can and do refuse shared care and can refuse any medication at any point and change their minds. Patient rights are often ignored.
How can one have faith in the nhs when statins are now promoted to be treated on mass....alledgedly as preventative. Or huge sums of money will be spent on fat busting drugs that don't resolve underlying metabolic problems? And pose dangerous side effects.....or even death!
Or when management over rules proven clinical need from their own doctors.
Or when GP surgeries having never met you send out letters as their first point of contact stopping critical to life meds leaving you without.....because they have the option to choose not to prescribe....& are not allowed to discuss ure medical needs with you before you register so you find out afterwards!!
That the nhs has the largest legal department in the UK.....its huge!!
Then the nhs expects us to think that their organisation can manage and keep secure our private personal health data??? Nope!! Not a chance!
I've opted out of sharing too.
Infact I'm keeping my contact with the nhs minimal these days to keep me safe from harm.
I get everything that you are saying and don’t disagree. It’s all being done on a shoestring with no-one, it seems, with a true overview. Maybe one person with an overview is impossible for this massive organisation. However if this is the case, it should very intelligently be split in such a way that a competent group of individuals can communicate with each other and be truly responsible and accountable. Not in competition with each other. Are there such selfless, competent, intelligent people available willing to be extremely well paid? I should think they are in very short supply.
I was a bit disappointed in Darzi’s report. It still never seemed to get to the root of anything.
Whenever I was involved in IT I found that IT consultants were not nearly interested enough in what the people who were destined to use the blooming stuff were saying. They were not listened to, or not nearly carefully enough. This ended up with huge gaps in what needed to be done by the systems. Workers input was not valued and presumably the IT people just wanted to ‘complete’ their contracts, get paid and get out, especially when they had not designed the systems themselves and were only implementing poorly designed systems.
As you say in your reply. Politicians, short ‘termism’, lucrative contracts, pals etc etc.
Yes it is very disappointing. I think there's so much wrong with the nhs that I doubt it's fixable in its . I've no idea how you can do that and suspect Lord Darzi brief didnt cover that. He didn't have much time to investigate before he reported. Unusual for a government led investigation. To me it feels like it was more a political move made to look like the new government is focused on sorting the nhs out.
Below is a link to the New NHS England report May 2024 showing its progress of reform. See if you can make any sense of what has been put in place and done to improve the nhs.
I totally agree with what you say re: the Darzi report. I can understand the pressure to be hoping to help but just not given the time and restricted issues. Ignore those limitations and try to do something or alternatively do nothing? An impossible choice for someone genuinely attempting to help.
Unfortunately I also agree on the political manoeuvrings.
One of the main problems is that there are no consequences when someone makes a decision and it is the wrong one. Wales chose a different IT system to England as it was cheaper. Turned out they were charged to add/change/delete anything. Was the person who made the decision repremanded - nope!
We had a way of ordering repeat prescriptions on line, it was a bit cluncky but it worked. The powers that be then cancelled that and said to use the NHS app. That is not working here. I tried, even reluctantly uploading my driving licence but when it asked for a photo taken by my computer, I backed out fast. I wrote demanding my driving licence photo be deleted. Crickets. We now have to "drop a note into the surgery" which is 7 miles away with no public transport. I have asked who made this decision and get blank looks.
"Lessons will be learned" is not true. Carry on as normal, forget the pesky patients!
I recently was admitted to hospital with a bladder infection. I needed extra antibiotics after having had IV ones to make sure the infection was gone. A young doctor came to my bedside with the antibiotic & thank goodness I was "with it" again & asked what she intended to give me - it was an antibiotic which would have killed me due to a very bad allergy in the past. It was put on my notes that I should never have it again, as just one tablet could kill me. Obviously my notes were not shared or read! That said, I did have a red arm band on which she failed to take a look at!
Yikes!! How scary!! Glad u felt well enough at that point to stop the doctor.
I don't know if this is off help re bladder infections.......sorry you've probably tried it. I take high strength cranberry tablets after i found a piece of research that showed it prevent bladder infections by making the bladder inhospitable to their survival. . I buy 12000mg Cranberry with vit C. It works. Not had an infection since starting them 2 years ago. (My GP was going to put me on a low strength antibiotic as my bladder infections kept recurring. )
Oh crikey. So sorry to hear this. Surely they should be investigating why ure immune system is compromised like this? Have you tried the high strength cranberry tablets I mentioned? I only take one per day now....but u can take 2. I was skeptical tbh but I didn't want to go onto taking antibiotics everyday. I was amazed.
Oh I am so sorry to hear this. The nhs is a jungle I'm afraid. And rarely does anyone join the dots together.....to a specialist they just see a little piece of you.....rather than the whole you.
I'm not sure who you would need to see but maybe a starting point would be getting someone to look at your immune system...... as you are on thyroid uk what treatment for your thyroid do you have. Is it optimal?
If its not optimal Jilly that's what I'd focus on. Under treatment can affect people in mutiple different ways. So I'd also check that ure vits and minerals are optimal too. If it were me that would be my next step. Have u got ure latest blood tests TSH, Ft4 & Ft3. Plus vit D, b12, folate and ferritin.?
I've just had all my blood tests done & all my results are all good, except Ferritin which is low, but I can't get that to rise. My red blood count was slightly too high, so I don't want it any higher & don't think there is a way to raise just Ferritin.
Yes. This I have been told too many times. Not for UTIs, something else. But it comes to an impasse. No worries there is no comeback on them, just the patient, so that’s OK.
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Online Access to Medical Records - Six months to go
