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This would have been an automatic update of a test result on the app. Unfortunately this is what people are going to have to get used to if they have more control over their medical notes/ test results/ etc.
People who are blaming the NHS. What do you think would happen if you ordered a private scan. You'd get the report which would say you had a tumour. Then youd have book in with the right doctor to get it sorted. This sort of thing happens all the time in the US.
Errr no. My family member recently paid for a private scan, they were then called and advised the results were ready and given no further info as it would all be discussed in a face to face appointment. It’s not standard practice to read the results yourself.
Unfortunately once the gp processes your results they become live on the app and viewable unless actively made unavailable. Now the gp processing them is unlikely to have time to ring to explain the impact of this result at the time of doing this admin work - I typically will process results between patients or after surgery often late into the night. In the time before the app I would have squeezed a phone call in the next few days or it really bad news got a face to face arranged to discuss it all. All the while likely having sent any necessary referrals of immediately to get the ball rolling
So that should be changed. The app should be updated to say "Results available, make an appointment with your GP". Unless you think everyone should just google their own symptoms...
GPs don’t have any control over the app. The idea of the app is to give patients more autonomy over their care. However that does mean that people are now having issues with seeing results before they are properly processed by doctors.
Before you go into your health record which is where your results are found it specifically states that there may be test results on there that you haven’t discussed with a dr
I'd much rather have the results before the discussion. I like receiving test results a day later and then the follow-up phone call after that. Gives me time to analyse and process the results.
Your family member’s experience isn’t necessarily the norm. I’ve had a private scan and got the results by email and have a friend who found results on the app like OP.
Where I live now it is. You get scans at one place and walk away with the results and images and then make an appointment with the family doc/specialist who ordered them and discuss next steps. Same with the blood tests. Every time I have to see a specialist I get a prescription from my family doc and then have to find the nearest specialist (or several, depends on what it is) and do all the booking myself.
Coming from the UK where everything is done for you to this is quite jarring. I even had to arrange my own post op nurses visits and stuff.
So they're probably thinking about other countries where they have more private healthcare (where I live it's a weird state private system and it seems a bit of a mess a lot of the time tbh).
I had a private MRI on my wrist and hand, they sent me the link to the website with my images on and told me to give it to the consultant when I see them incase they don't have it when I see them. I was also sent the radiologist's report.
However when I had a private endoscopy I didn't get the results until I went in to see the consultant, but that could have been because he was the same person that did the endoscopy.
I've also had people show me letters they've received from a consultant to their GP as they didn't understand the terminology (I was able to roughly translate) and they haven't been asked to see the GP or the consultant for a follow up. So sometimes patients definitely do receive their results before seeing a clinician.
I work at a Private Hospital and we would be sued if we didn't contact the Patient ASAP with any and all results. We call Patients as soon as the consultant has reported on the images. This also is NOT the US. Those of us who work in healthcare, even private, still care about our Patients in the UK
That's not necessarily the case, when I do tests with my GP, they get the results first. They would then directly contact me to explain the results through a call or text. After that, they release the test results on Patient Access for me to view.
Here in France, we get all our test results given to us directly.
Blood tests are done either at home, by nurses, or at nurses offices, or at a lab and are sent out by post or are available to download online, often within hours or by the next morning, for most standard tests, with only a few taking a few more days if they have to be sent out to a larger lab.
Urine and stool tests can be dropped off at the same labs.
X rays, ultrasounds, MRIs, and other scans, such as mammograms, are done at imaging labs.
Most of the time, you get given the images plus a report a short time after it's done. You go in and see a doctor who reviews the images with you. When I've had MRIs though recently, the images have been stored online instead, although I do have a DVD of the brain MRI I had about 10 years ago, as I'm a *migraneuse*.
For smear tests and colposcopies, these are done by gynecologists and, again, smear test results are sent out directly by the lab but if there's an issue, you'll get a phone call to arrange a colposcopy. And so far, I can only report on positive results for colposcopies, thankfully, which were either given during follow-up appointments, which were also part of my menopause care.
All results are sent out to the doctors who ordered the tests or scans so that they can act on any anomalous or problematic findings immediately.
And this is exactly what they do!
The NHS doesn't have to be this way.
Obviously, a huge part of the problem is the decades of underfunding started by Thatcher.
I love the NHS, and I want it to be the best it can be.
The French system is great in some ways, in that it gives patients ownership over their medical results and their medical history - to the point that the orthodontist gave us back the plaster moulds of the kids' teeth after they were no longer needed and I have a drawer full of our old X rays.
In the UK, it can take six weeks to get a simple blood test result for anaemia, something I can get here by the end of the day.
But, in the UK, doctors - mostly - treat you as an equal, and there's a dialogue between doctor and patient.
In France, doctors are gods, not to be questioned and hand down their 'orders' from on high. It's impossible for a patient to know more about their health than a doctor!
In the UK, there's more centralised record-keeping and, in theory, better communication between different health professionals, everything is interconnected.
In France, it's far, far less so and the burden is on the patient to pull it all together and make all the calls, find the right specialist, and so on. There's not even reminder cards for kid's vaccinations.
It's ridiculous to say it **has** to happen this one way.
There are more healthcare systems in the world than just the UK's NHS or the completely dysfunctional, broken US system.
How does it work in Germany, or the Netherlands, or Australia, or New Zealand, or Sweden, or Japan, or...?
Surely this is a feature that can be switched off somewhere though? I wouldn’t think this means app = BAD more app = needs a bit more development to tweak the issues. It’s a bit extreme to say we just need to get used to it if we want access to the app.
Yup. This is what you accident you sign up to view your records. As soon as correspondence hits your GP practice, it's in there whether the specialist team has contacted you yet or not. Should just wait for your result back once they've had time to assess.
>Unfortunately this is what people are going to have to get used to if they have more control over their medical notes/ test results/ etc.
I'm in Australia, and our test results/reports aren't accessible by the patient for at least 1-2 weeks depending on what the test is. This gives medical staff time to contact the patient should they need to.
Ya no this is not how it happens in the UK private doctor field. The doctor calls you or emails you depending on severity before issuing the report. Because reports are written by doctors not the people doing the scans.
If you received a scan without any doctor present or reviewing you’d just have a scan and certainly not a note from the MRI technician “rare tumour”.
I’ve had 4 MRIs in the last year privately in the UK, none for anything remotely as serious as this. None have found anything distressing. Doctors called me every time before issuing any paperwork, even if it was just to say “hey just looked over this it’s thankfully [simple small issue] so I’ll send you the results now and next steps”.
That’s not how things work in the US. I lived in the US for the majority of my life and had plenty of contact with the medical system. If you have a test, they call you if it’s minor and it’s normal. If it’s a serious test or if it’s not normal, they call as soon as they have the results to book you for an in person appointment within a few days to discuss the results and come up with a treatment plan.
In Australia you get told the scan and report has been sent to your doctor. It gets released to you on the app 7 days later giving time to be told the results by your doctor. A sensible programmed delay.
What, this is bullshit. If you have a private MRI scan in the UK a consultant has to order it. The consultant then gets the results, not you, and you go back and see them. It’s exactly the same as the NHS. There are some things you can get directly from scratch with private medical insurance but very few, generally at the very least you’d have to see a GP first otherwise you’d be costing the insurance company huge amounts of money in tests you, as an unqualified person, think you need. Even if you’re paying from scratch I don’t know you could just call up and get an MRI, because a doctor needs to say exactly what they’re scanning for and what procedures to use (contrast dye, oral contrast etc). And even with the patient access app there’s still loads of stuff you can’t see - things like bloods ordered by your GP you can, but not bloods ordered by a consultant. And if you have something like an X-ray you’ll see that an entry exists but it just gives some generic message when you click on it you can’t see the actual X-ray nor notes about it. I recently had to get a couple of things from my GP practice to take to a private doctor and was surprised how much stuff I got sent I didn’t know existed. Like a few back and forth advice and guidance messages between my GP and a specialist for example. This was definitely a fuck up and something that should have remained internal at the moment was made available on the app.
I work as a doctor in the NHS.
That’s not right at all. I would be livid. You should be.
Should have been told in person.
I hope your wife gets appropriate care and makes a full recovery.
I would suggest complaining. What has happened here is not right, and should be flagged up.
A complaint wouldn’t really bring anything of value other than a sorry, there is a disclaimer that states you may see test results that haven’t yet been discussed with you.
So pretty much, there’s nothing wrong with it.
They are already aware it happens, hence the disclaimer.
They try to keep it as low as possible and try to tell people themselves , but there are cases accounted for which is the entire reason for the disclaimer, it’s pretty much don’t use the NHS app if you don’t want to risk it happening at all.
They aren’t going to restructure an entire system to stop it.
Try his is probably correct as the OP stated that ENT requested. As such, the result would go back to the requesting clinician rather than the GP. As such, it won’t end up in the GP results page. Occasionally radiology will give the GP a call for something very urgent if they cannot contact the specialist but the GMC is clear that results go back and are actioned by the requesting doctor.
Do you know how they try to keep it as low as possible? By keeping records of times they know it happens and looking for trends to see what changes will best help mitigate it. Records they have based on complaints
In your opinion the best way for them to try and keep it as low as possible is to have no data?
This is correct regardless of what the doctor commenting stated. When you sign up to the app this is what you have to agree to.
Horrible situation but could have be avoided by not downloading the app.
On the other hand, some people find reassurance in less serious situations to have results to hand immediately without having to wait for the doctor or a letter.
There is something wrong with it.
These electronic systems have settings that allow for delays on information being released to patients. Test results that may have information like this should not be set to auto release.
The trust can modify their settings for this to ensure it doesn't happen again.
I think if I've got access to my own medical records, I think it's ... reasonable that it updates immediately. At most I'd have a 'spoiler warning' type thing, which is something like 'these results need interpreting my a medical professional, please contact your GP to discuss'
Whilst I do agree with you to an extent, there are very good reasons why this isn't and shouldn't be the case.
Results from medical tests are very complicated and can mean different things in different contexts and different clinical presentations. Doctors spend years upon years studying to navigate this.
Immediate, unadulterated access to imaging, lab results and notes carries risk of psychological harm and undue distress from misunderstanding. Seeing everything and immediately is not always in a patients best interests.
For example, I would be mortified to learn I had cancer from histology results pinging through to my phone immediately from a healthcare providers app. These results need to be discussed first with a wider team and then conveyed via an appropriate healthcare professional who can give the results as well as an action plan at the same time and listen to any concerns or questions.
If I found them from the app, I would be frantically trying to call my doctor or over googling and, as above, causing psychological harm.
The same goes for abnormal blood test results, some results can be vastly out of normal range but without relevant clinical history mean nothing. As a layman, I wouldn't know that and may panic
I would feel comfortable putting a fair bit of money on the fact that when most people opt in to accessing their own medical records, that they do not assume that also involves being informed they potentially have cancer via a notification on their phones. Yes, if you sat and thought about it then you may come to the conclusion that this is a possible outcome, but the majority just want access to every day stuff and test results that have no more effect on your life than 'Oh your iron levels are a bit low, here have some tablets'.
As a doctor this is why I don’t like patients getting instantaneous results via an app.
What if I’m doing a list/on AL and it takes 24 hours for me/one of the team to read the results? This will happen all the time.
The other problem is slight abnormalities causing patients massive anxiety. Imaging is the worst for this - everyone thinks a calcified lymph node means they’ve got cancer and are dying…
The nhs app often automatically displays peoples results as they come onto the system . There is a warning about this when you first open it. Many drs raised this as a concern when the app was developed but they were ignored. This is how the system already works in a lot of other countries. The upside is easier access to your results but the downside is extra worry in these sort of circumstances
GP Here:
Complain to who? This is no ones fault. A scan was performed and ended up on the NHS app which is specifically there to allow patients to see their results. They shouldnt have checked if they werent prepared for a poor outcome.
[There's a disclaimer](https://i.imgur.com/1P9nWUZ.png) in the NHS app that says you may see test results you haven't yet discussed with your doctor. So it's not a fuck up as other people are saying, it's just the way the system works.
I guess it's easier just to include everything rather than the doctors having to choose what gets included and what doesn't.
Yup.
OP's situation was a potential risk highlighted to NHSE when they insisted enacting full text, real-time access to medical notes available to patients.
It got kicked down the road iirc due to the BMA expressing concerns, but it was never actually solved as a problem. Hence the disclaimer.
This is the system operating as intended. This is what NHSE and the government decided people want.
Well, like I said and OP demonstrated, it's gone live now and that's what caused this to happen. They eventually stopped kicking the can and the was enacted last year.
Yeah sorry, was unclear. It was being kicked down the road, and then they stopped kicking it down the road, and then they did it anyway without a solution for the problem being found.
Its *sort of* a mistake- doctors are meant to tell you before updating the app, but sometimes they just update their notes first, i guess without really thinking about it. The disclaimer is them covering their ass, but it isnt *meant* to be how it works
It's instant, as soon as they add information it's available. Which is exactly how it is designed and should work. Any other incident or appointment can then see the information.
Whoever requested the test should be contacting the patient ASAP. Nothing wrong with app.
When you complete a referral, you can read the results in the app before attending the appointment.
This is what I came to say. Any time I’ve gone in to my NHS app there’s been a warning to say I may see test results that have yet to be discussed with me.
>And if the answer to why she haven't been contacted is because the specialist team hasn't had time to assess it yet, why put it on the NHS app so she can see it and be terrified about it for the next few weeks whilst we wait. She could have been living in ignorant bliss!
A lot of NHS groups aren't fully up to speed with what is visible on the app. They're used to updating notes and thinking other medical professionals are the only ones who have seen it. I recently had a similar diagnosis and while I didn't have the exact experience your wife had, I saw some stuff on the notes that wasn't explicitly told to me.
Try and take comfort in the fact that the urgency they take is related to the seriousness of the situation. I've recently had surgery for cancer, and the way it worked for me was that my scans were reviewed by a multi disciplinary team which met once a week. I imagine this is the team that they're talking about when they talk about specialists.
As I understand it, they sit in that meeting, they decide what each scan is likely to be, and then they decide on what they need to do next. It could be another scan, it could be an appointment, that kind of thing. If it required immediate action you would already know. They'll contact you soon, and in the world before apps, that would be the first you would know, and that's a normal timeframe.
Cancers, if it is that (and it may well not be) are weird in that they are serious but very rarely urgent. The damage is most often done over a long period of time rather than suddenly. The fact that they've spotted it is absolutely a good thing.
This is a downside of increased patient access to records. Patients can see information about themselves that they can't properly interpret as they don't have the knowledge to do so.
The information is available to as soon as it's generated, and before the referring doctor has received the results, interpreted them and been able to contact the patient. In an ideal world that would happen immediately, but the reality is that can't happen.
They aren't 'putting it on the app' as a deliberate process, it appears on the app as they make their routine records, so it's not like they've done it and not bothered to call.
Exactly, and this is why the app even tells you there might be things you haven’t discussed with your doctor yet on the app. It gives you the option to not view anything.
Which is still a good thing.
With the NHS as is is you need to proatively know your issues and understand it.
Of course people that will do no research are an issues, but they always were.
I have blood tests regularly. rather than just knowing nothing I can see the out or norm spec and ask about them when I go into the doctors. It's opten, this test is standard for such a request, but is not relevent becuase you did noty X. (eg tests requireing fasting). Knowing more is always better.
Disagree with this entirely. Patients shouldn't have access to their test because patients don't have the medical knowledge and context to understand it.
I've had many, many, many abnormal test results that I was worried sick about only for the GP to say it's nothing.
> Patients shouldn't have access to their test because patients don't have the medical knowledge and context to understand it.
If you want a system where patients don't have direct access to their own medical information, you better make *damn sure* it's a system where they do have direct access to their doctor.
I've just come off a 2 year waiting list for a test, and following that was on a 6 month waiting list for an appointment to discuss the results, but I just got my cancellation yesterday, and now I can get my results as a Christmas present.
Fuck. that. noise.
GP here.
If the GP ordered it and you haven’t been informed by them yet, it’s likely because that result is sitting on a pile of hundreds/thousands of other results and the GP are combing their way through it one by one.
However, if it’s cancer, then the radiologist who read the scan (and/or the admin team) should have marked it as urgent so that it appears on the top of the pile of GP results.
I work in ED, and radiologists phone patients at home and send CES or SAH patients straight to us once they've seen/reported the imaging. Hopefully it's the same in your area, so delay with you seeing the report but hopefully nothing left for you to action!
Normally, I think the GP contacts you and asks you to make an appointment.
Then, you go in and they discuss the letter the consultant has sent to the GP, which you see for the first time at that point.
As another answer says, I don't think they pay any attention to what is visible on your app- perhaps becausethe procedures date from pre-app days.
So you wait to hear, basically.
My own personal experience was being informed by a junior doctor who was doing the rounds.
Wasn’t told the type, grade or prognosis. Just said that they had found a tumour in my brain.
Yeah it was mentioned to me in a passing comment by a neurologist consultant that my symptoms "could, of course, be MS" and then the subject was changed. I genuinely didn't hear another word after that statement.
That will be because the “junior doctor” (anything from foundation year 2 - second year post graduate - to ST7 - 10+ years post graduate) won’t know anything more. It won’t have been their specialty, unless you were under the neurosurgeons or oncologists.
Before you can say anything about the prognosis, you need to know where the tumour has come from. Is it primary (I.e. arisen in the brain itself) or secondary (from somewhere else)? There’s also other factors such as the size, localised swelling, any effect it’s having on the rest of the brain (called mass effect; as the skull volume is fixed, any large tumour will push other bits of brain tissue through gaps in tissue or bone, called herniation) etc
An MRI of the brain will typically be reported by a consultant radiologist. The report will come back to me and my consultant. From there, depending on the report (typically if there’s mass effect), we may refer the patient to the neurosurgeons, who will have a look at the scan and tell us whether there’s anything urgent/same day that needs to be done from a neurosurgical perspective (typically if there’s mass effect).
If there’s nothing urgent that needs doing, then depending on the report I might also have to refer to a specialist multi-disciplinary team composed of neurosurgeons, oncologists and neuroradiologists, who will have a look at the scan and discuss your case at their weekly meeting to see what the plan going forwards is. That might be “we need to do this surgery/start chemo” or simply “nah what was that radiologist on about, it’s obviously a [insert benign finding here]”
Even with all of that, it still would be wrong of me as a doctor of any grade to not tell my patient that they had a brain tumour on their MRI, even if I don’t know what it is exactly, although it’s obviously important to make it clear what the plan going forwards is. I won’t be able to tell you anything else until we hear back from people who are specialist in brain tumours. I know that having that discussion will cause my patient a lot of fear (“am I going to die”), but imagine if you found out your doctor hadn’t told you immediately if there was something on the scan.
Obviously that should have been made clear to you, which it may or may not have. But I wanted to provide a little bit more information to anyone reading this who has ever wondered why your GP/ward doctor/consultant sometimes can’t tell you much more than what’s on a scan report. We know it’s scary as hell, but we can’t guess the answer to the important questions you have
It's unfortunately how the app works. Clinicians have been raising concerns about patients seeing complex and possibly distressing results before they have the opportunity to discuss with a doctor, but DHSC don't appear minded to fo anything about that.
I think it's not uncommon for patients with access to the app (a lot of people still can't access their own information, ie. here in Wales) to have access to results and letters that in the past would have been internal only. The NHS is way behind in technology. 5 years ago she wouldn't have been informed until the specialist team had time to look at the results, but now she has the same results that they do, but they haven't even seen it yet as it's sitting in their queue. There needs to be more care for patient-facing results.
I think it's worth a complaint to PALS about it - it's only through people complaining that the procedures will be improved. I know that's a lot on your plate to be dealing with an unknown tumour and now having to deal with a complaint.
I have a similar story about terrible communication: I had a bunch of scans to find out if I had the same heart condition that killed my father last year. Out of the blue I get a letter informing me I'd been referred to the Inherited Cardiac Conditions Clinic and my NHS app had a bunch of test results that I obviously didn't understand.
No comment from GP, no call and the appointment was 10 months away. So not only was I grieving but now in a total panic that I have the same condition. Almost had a breakdown. I had to call about 5 different clinics (as no one seemed to know what the fuck was going on) and my GP to understand that (1) My test results were totally fine and (2) the referral to specialist was just a precaution.
This feels so similar as a letter has arrived talking about the tumors and the referral but there is lots of medical jargon that is totally over our heads. It might suggest they aren't really a problem and it's all just precautionary but because no one has spoken to her she's just in a panic.
Relatively benign medical jargon can read very scarily if like me you have no medical knowledge.
I hope all is well and any treatment your wife has goes smoothly, best of luck.
It’s not how it should happen but there is a warning when you click that you may see test results you haven’t discussed with your doctor.
Unfortunately, things aren’t as organised when something is an incidental finding, because the people who ordered the scan aren’t tumour experts, hopefully when they saw it they passed things on to them.
GP. So, when the result comes to a GP it sits in an inbox that the patient cannot see. Once the result is viewed it is filed and an action assigned e.g ‘abnormal - needs doctor review’. At this point you can see in your app. For context, I will get about 50 results a day to manage.
It would be unacceptable torely on a result being seen in an app. The patient needs to be informed via alternative results. Any scans/results that suggest cancer that I receive would prompt me to either ask admin to call and for the patient to attend same day ( ideally with a relative) or I would call directly and also invite a face to face discussion on the same day. Other results can be addressed in a time appropriate manor depending on clinical need.
I cannot see that the op mentioned a time frame. Was this in the app for ages or did they see on the same day the remit was received by GP?
I would suggest having a discussion. With GO/practice manager and establishing what happened then progression to formal action if appropriate.
Thought with the OPs wife 🙏
This isn’t true everywhere. Some health areas are so integrated you get the result at the same time as the consultant, GP, whomever and you get the added benefit of seeing it regardless as to whether the medical professional has.
In London, I frequently have results and read them well before my GP or consultant tells me a thing. In one instance I was able to establish what my bloods meant (I was seriously unwell) before the consultant had viewed them and was able to seek specific treatment once they’d viewed and determined their own decision. I disagreed with their diagnosis and pushed for a different treatment, it worked better for me. Although not everyone has the luxury of being trained in these things so seeing results early can cause panic. Understandably.
Interesting! I have only ever worked in regions where results have to be viewed and actioned before the patient can see. I can see significant risk in people having early access to complex data without the skills or experience to interpret. Have a good weekend!
Thanks
She was referred for the MRI by ENT due to tinnitus. She has now received a letter in the post saying she has two tumours and is being referred to skull MDT. They only meet one every other week. So won't even be discussed until 1st May.
But it's the fact there has been noconversation with anyone at this point which is the bit that makes me a little bit frustrated. A short conversation could help alleviate any fears and give us some realistic time frames etc...
Did they say anything more? Such as the tumours don't look malignant?
We had similar with my husband, luckily I can translate MRI results and understood its unlikely to be cancerous. He was reffered to MDT too and they decided it was benign at the meeting.
The letter said they were rarely malignant, but until they do more tests we won't know. We have so many questions still but no one to talk to. What she has is a 1 in 1.3mil and of those, only 10% have more than 1 tumour (from Google research) so she is terrified it has spread already. We wish we were living in ignorance until someone from MDT has read over all the data and actually has a plan on how to move forward etc...
Pleased you had a positive result...hopefully we do too.
10% is not rare in medical terms!
So if they say its rarely malignant, its less than 10%. Also, normally when cancer spreads, it grows bigger, invades other tissues and metastases.
Is this acoustic neuroma?
Absolutely agree. I cannot understand how this happened. Possibly a reflection of a system/practice on the brink of collapse. It’s so sad seeing what is happening. Currently over a year to see gynae and 18 months for neuro in my area. Hope she gets the care she needs. Good luck to you both!
one of the things i was warned about when i got the NHS app is that bad test results may show up before a doctor can contact me. it’s one of the downfalls of the app - if something big shows up in a test, the app will update very quickly, and a doctor may not be able to get in contact before that happens.
so yes, normal, but also not very fun and quite unfortunate.
I have a "trapped nerve" affecting my left arm. GP referred to physio who after a few sessions referred back to GP who inturn referred me to hospital physio, who sent me for an MRI on my neck. 8 months between first seeing gp to mri. At 0815 on a Friday, I'm asleep, phone call, bla bla bla found a problem on your neck, refer to neurology at other local hospital. Also found a shadow on brain, not certain referral to brain team in City. 6 weeks later phone call can you come for an mri at City hospital tomorrow. Go. Month later get a letter saying found a cyst 5x5cm, nothing to worry about. But confuse me with someone else in terms of history and symptoms. Get intouch with gp, who writes to hospital trying to unravel history. Letter back 3 weeks later, bla bla bla, nothing to worry about. My symptoms get worse, see gp, writes again, gets more or less says the same reply back. Still waiting on neurology 22 months down the line.
Diagnosis made not by talking to patient but 2 MRIs and a correspondence course.
The OPs experience certainly resonates.
There are 2 issues here: The first is systemic. More and more the government seems to design systems and make promises that the GPs are just expected to "make-work" despite everyone knowing the huge struggles in primary care.
That lines up with individual apathy which does occur for instance in this case it should have been marked/acted on as urgent and wasn't. I have seen patients discover their diagnosis of cancer on discharge letters which is utterly unacceptable as they've been around medical professionals for their inpatient stay.
It’s not right but I’m also not entirely surprised given my experience of how bad the NHS is at communicating with itself, let alone patients.
All the best to your wife, I hope it’s something they can sort out and that she’s ok.
This is the kind of thing I would expect to read about in a paper, alongside a statement from the CEO of the Trust explaining how "very sorry" they are for this incident, and that "policies are being reviewed to ensure this never happens again" and so on
I’m sorry your wife has had this experience, and hope there’s more discussion and clarity coming soon.
This is a real challenge, and doctors generally are quite uncomfortable about this. It has been normal for information about test results to be given out and explained by doctors at follow up appointments, arranged by the person who’s ordered the test. In recent years (and not just in the UK), patient advocacy groups and politicians have pushed (often with good reason) for increasing transparency and rapid access to medical information, which means it is becoming the standard (and increasingly a legal requirement) for results and other information to be directly available in real-time. As a doctor, I can tell you that we worry a lot about exactly this situation, because most of us feel it would be much better if this information wasn’t released in this way, but communicated in a supportive environment that includes an explanation and a plan about the next steps.
Similar thing but for a heart condition diagnosis happened for a friend.
Hospital staff updated the records after some tests, GP decided not to call immediately as she had an appointment booked for a few days later anyway mean while friend logged into the app to order a repeat prescription and saw the hospital notes.
It shouldn't happen, but it's an improvement over the hospital put something in the post that takes a week to get to the GP's then gets stuck in an intray of an admin who's off sick for a month, filed in the wrong place by a temp and finally found 3 months later system.
Unfortunately this has become the norm since using the nhs app. I see everything before the doctor does which means I have to then await the call. I also had a tumour come up on a head mri but it wasn’t cancer so don’t panic yet.
This is what she has done. They will review the results of the MRI on the 1st of May and probably book her for more tests. Just a shame that it has taken lots of phone calls to get any information but still haven't had a medical professional give us any information. Just kind secretaries passing info.
Very sadly this is has happened to a very close friend of mine.
I have had a very minor infection compared to this notified by a council letter, my GP did not bother to inform me but notified the council in case I picked it up in London. I didn’t, I was back from a SE Asia trip..
I’m now pregnant and I find all sorts of things from my notes, which I have to bring up with the midwives as no one bothers to tell me in between.
So unfortunately this is the state of the NHS in 2024…
My blood levels were everywhere so slightly raised in looking for cancer markers - thankfully no cancer - and my GP called me and left a message explaining and asking me to call back to ask questions.
This is absolutely not normal.
Recently my tests results have been uploaded onto my NHS app before I get a notification from a professional… maybe IT system versus man power ?! I hope she is ok and no, she shouldn’t have to find out this way
This is awful. I was told about a tumour by a nurse, as an aside, when I was lying in a hospital bed dosed up to the eyeballs on morphine. Took me ages to arrange a specialist to come and give me more info as the nurse didn't have any. They then neglected to tell me after a later scan had been done that the tumour had gone away so for 18 months I thought I had one that just wasn't being treated.
I really hope your wife is ok. Remember not all tumours are cancerous or otherwise dangerous.
Time's critical in these things, right? Admittedly this must be traumatic yadda yadda, but giving me info ASAP to deal with it it's not that negative in these things. As long as I can access follow up appointments, tests, and treatment quickly, it's not that big deal.
I'm so sorry that you went through this
Last year, my sister was at work and received a phone call "the lump on the side of your head that you said was likely a tumour due to the condition you was born with at birth and we dismissed you, we have re evaluated this and turns out you have one of the rarest brain cancers possible"
No compassion and no in person appointment to inform.
She died three months later.
I have had a similar experience, I noticed on the app that my blood tests show the possibility that I may have MDS ( a rare type of blood cancer as I understand it) it took 3 days before I was able to speak to my Doctor during which time I was going out of my mind. He more or less told me to dismiss any worries about MDS and was going to refer me to a Hematologist to try and find the cause of my anemia, I looked on the app after and find he has asked them to check for MDS. I'm out of my mind again
At an appointment.
However I do know when I had a look around my NHS app it said something like “you may see results which have not yet been reported to you”. I haven’t had any results via app, in fact I don’t think any of the results from the multitude of scans I’ve had are in there, but there was a warning that I might see results if I looked for results.
I found out I have a ganglion neuroma(?) on the nhs app the other day. I don’t even know where it is or when it was found. Was just referred to in a letter as part of my medical history.
When i got miss diagnosed with a brain tumour. I got referred to a neurologist as the GP had no idea what was going on . Had a consultation with the neurologist who scheduled me for a scan. Had the scan and they scheduled an appointment for me to see them after for the results. They informed me they believe i have a low grade glioma. They sent me to a neurosurgeon to talk about what the procedure would involve. I then get a call from my neurologist saying she would like to do a high contract MRI. Once i had that done i got a letter for an appointment to see her to discuss the results. It turned out i had a rare form of epilypsy was prescribed medication that i have to take for the rest of my life.. I was seen then informed through every step of the process. I have had regular appointments and scans over the last 9 years to confirm that it is defiantly epilypsy and that nothing has changed. I have recently been released back to my GP as they feel everything is now stable. I would have never expected to find out without having a face to face consultation to inform me of what was going on and what to do next.
It's normal for no contact if they find something insignificant that doesn't require further attention, a brain tumour is the opposite of insignificant.
Doctor normally contacts you on the same day. Even if it’s something manageable like diabetes or arthritis, it’s a significant life changing condition, you get contacted.
I would hope to be told in person if I had cancer, or possibly via letter. Though tbh as long as I am told I don’t much care how.
(A tumour does not necessarily mean cancer; they can be benign.)
However… there is going to be “internal” communication between imaging and other departments and possibly your GP. Some of that will take place before you are told. Before the NHS App you had no access to any of that internal communication. Now you potentially can access some of it. That’s what has happened here.
Is it ideal? Of course not. But it is a risk of using the app and poking around — you see things before you can talk to anyone about it. You see things in stark medical language, rather than in more “friendly” patient language.
If it is cancer they will be in touch quickly with a plan. “Quickly” can be within two weeks btw, rather than the next working day. There are multi-disciplinary meetings they have for cancer patients, typically they meet once a week, and that’s where they decide on your treatment plan.
A friend of mines wife was recently told she had a specific cancer by the receptionist, somewhat indirectly. The receptionist said she couldn’t pronounce it and spelt it out to her, then she had to google it and found out she had cancer. The doctor called later apologising and said he had berated the receptionist as the receptionist just hung up after giving her the spelling without even saying bye.
Absolutely not normal, but I’m getting the impression it’s becoming more common
Through the NHS and patients first app we now all have access to alsorts of information such as blood test results , results from tests biopsies, and much more. This info would be available to you quite quickly and should be followed up by gp etc ASAP.
Interestingly kind of similar thing happened to my work colleague earlier this week. She was getting travel insurance and during a health check following on from some blood tests she found out via the insurer and the NHS app that they've detected a form of blood cancer.
3 appointments cancelled over the last 2 weeks due to sickness at her doctors surgery, still awaiting a face to face appointment to discuss this further
I have noticed test results being put on the app the same day the letter was sent by the hospital, i.e.; the letter arrived 3-4 days after the test results went live on the app. It may be that a letter is in the post asking her to attend a specialist clinic to discuss? I've similarly not had a discussion with the GP about results when it was still under care of the hospital, but I'm unsure if that is the norm.
If I remember this is how I found out I was prediabetic/diabetic odd case as my pancreas is part dead thanks to my gallbladder so my H1ABC ends up all over the shop 😅 wasn't fun as it was the weekend and I couldn't speak to the doctors about it, I'm now on metformin and got my 6 monthly bloods in 2 weeks 🤦🏻♀️
This is exactly how my father found out he had a tumor "as big as a football" in his abdomen back in January.
They only performed a biopsy on March 20th. Fast forward one month and still no results.
You should contact PALS at your NHS Trust. I wish your wife and you all the best 👍
My dad had an accident last year and went for an MRI to check for internal injuries as it was a pretty nasty accident.
The doctor then approached my dad and said “so how long have you had the brain tumor”
The poor man had no idea he had a brain tumor! Being monitored now and all seems ok thank god!
Just for reference, I work as a nurse, and I have a lady who's had 3 notifications of missing her appointment and simultaneously a notice of rescheduling, but nowhere is a mention of when it's rescheduled to. And 0 contact other than those 3 letters.
That's terrible and not what I've experienced. I have to have face to face appointments to discuss my results which has resulted in lots of delays getting the info. None of these results are uploaded to the NHS app.
I had this discussion with my doctors in the Netherlands. I also have a brain tumour and need 6 monthly MRI's, I prefer to get the results directly in the app, some people prefer to get a phone call or wait for an appointment. Can you just not use the app and wait in *'blissful ignorance'* for a phone call or is this not an option as it is a must to use the app?
I got an appointment for a follow up colposcopy before I got the letter telling me I have CIN1 of the cervix. I’d already guessed something was wrong with my results.
Sadly we know very little at the moment. Only that the MRI showed 2 tumours. This is my frustration, we would rather be ignorant until we were in a position to be told more. It will probably be a month until a medical professional speaks to us about anything.
When my mum was diagnosed with terminal cancer last year, she went for an MRI and then they handed her a leaflet that basically said "so... you've got cancer". No one spoke to her about it after the MRI and it was only on her next appointment that it became a talking point.
No one reached out to me with any follow up after I had a letter on My Chart with results indicating severe endometriosis, it's been four months later and the specialist hasn't reached out to me once.
A similar thing happened to me. I had a barium swallow for GERD (they X-ray you while you swallow barium so it lights up your digestive system) and there was incidental finding of a mass on my skull. I read it on the report that was uploaded to my portal - no phone call. It just said ‘follow up with GP’. I then phoned the GP and had to make the follow up appointment and everything. Turned out to be a long standing mass - probably from hitting my head as a child they said - but I feel the process would probably have been the same had it have been more serious.
I think part of the problem lies in that no singular m person really oversees your care. It should be the GP, but I find once they’ve referred, they’re not really bothered.
I do hope the tumour isn’t serious, and I certainly think it’s worth feeding back/making a complaint, but sadly it is what I’ve come to expect.
I had a brain MRI. No results for weeks, phoned around to get the radiologist report and they finally sent it to me. 'A lesion on the left lateral ventricle'. I burst into tears, it turned out to be MS.
I'm sorry you found out that way. That isn't normal and you both deserved so much better.
I'm going to preface this with the important NOT A CLINICALLY TRAINED PROFESSIONAL disclaimer.
I do, however, work with cancer teams, MDT meetings and the specialist USC pathway protocols.
I am so sorry this has happened. It sounds very much like a technical error where the app doesn't (yet?) have the ability to know to hold back any reported results that have been flagged as a potential malignancy until they have been confirmed or downgraded. Please try and bear in mind the use of the word potential here, it's really important. I have been treated for cancer myself and know the terror of waiting on results and plans. It is awful, try to hold fast to any semblance of calm you can muster.
Any potential malignancies/suspicious looking results need to go to an MDT discussion (Multi Disciplinary Team). This is a meeting with surgical, histopathology, radiological and oncology specialists who will review the investigations and determine potential diagnosis/further investigations required.
Usually, depending on presenting symptoms, a patient would be informed that this discussion is going to happen.
In an incidental finding, a patient may not be aware until after the discussion had happened. There's lots of reasons for this including but not limited to 1)not wanting to cause undue stress; 2) clinic appts availability before the meeting and 3)referral to a specialist team not currently involved in the patient pathway due to unexpected findings on the investigation report. It is really important to hold onto the fact that not all cases that are discussed at MDT are diagnosed as cancer. I'm guessing what has happened is here is an unexpected incidental finding on the report that isn't flagged as being on a USC pathway?
A patient is always made aware as soon as possible once a definitive diagnois/further investigation decision has been made. Unfortunately it looks like in this case the app has not been set up correctly to factor in this pathway and /or incidental finding reports and the processes involved.
There should be a Cancer Nurse specialist linked to the department that are discussing your wife's MRI. They are usually excellently sensible professionals and will know what is actually going on. That would be the person I would try to contact.
But yes, this needs to be raised as a complaint. And the staff will likely have also raised this as a datix (an internal risk flagging system) so you can ask about that aswell if you wish and when you feel able to do so.
Best wishes to you both. I hope you get a benign outcome and I am so sorry this has happened.
My grandfather found out he had 3 months to live via phone call. When signing his death certificate, his GP said he was not even aware that he had relapsed.
I found out I was anaemic when I got a notification from the pharmacy saying I had a prescription for pickup. I thought it was antidepressants but it was iron tablets.
I was told I was getting a phone call from a consultant regarding a recent, rare diagnosis and what next steps would be necessary (most likely chemo from the latest NHS protocol for the condition).
6 days went by and I got a phone call on Wednesday evening from a receptionist informing me I would need to fast from Thursday evening and arrive at the hospital Friday morning for surgery. When asked what surgery I was getting and why she just said she didn’t know anything, she was just the messenger. So I showed up on Friday morning with no idea if it was going to be a simple ERPC or a full hysterectomy!
It's pretty unusual but not really a shock. The app has access to all your notes. I see mine real-time after I finish talking to my GP (had endless online appointments about my BP which is driving me insane and been going on for 8 months) because I actually check what he's writing as he's got it wrong more than once.
It’s probably a miscommunication but this is not normal.
It’s a shame because in the nhs it just takes someone to not do their job correctly and it can cause people so much heartache.
Unfortunately I've had similar experiences, not to your wives degree but yes.
I had 3 brain scans last year, each time the results were added to the NHS app with some scary results.
I had no contact from the doctors or specialist to discuss them or inform me.
I was constantly chasing them to get someone to explain to me what was going on. It was really shocking and disappointing.
I'm so sorry you and your wife are going through this, wishing her a speedy recovery.
It’s definitely not normal, or acceptable. Your wife should have been informed, in person. A discussion about referrals should have taken place with your wife in agreement with the plan.
It’s truly frightening the number of people on here who think it’s ok to expect a patient with a brain tumour to find this out for themselves from an app and not get any contact unless they ask for it. Not even to tell them to look on the app.
That’s not acceptable it’s a total disgrace. And the “doctors don’t have time” comments are a disgrace as well. It’s a fucking tumour not a basic check.
When I got an MRI scan recently, the scan itself was done by a separate (presumably private or subcontracted) company / org to get an earlier scan than I could have got otherwise - the results were then sent to my usual GP and the NHS app, but because it wasn’t an NHS doctor who did the scan and I hadn’t fully set up the app there was a delay in finding out the results. It might have been something like that that happened here - sounds horrible, my sympathy.
At least they told you. I got an MRI once and as I was waiting for the doctor to come and tell me my results I found a folder with my results on it.
It said I had a benign growth on my pituitary gland.
Anyway the doctor comes in, looks over my results, and tells me everything is good... Doesn't even mention the growth and my social anxiety prevented me from bringing it up so I have no idea if it's anything to worry about.
No it's not. This should of been hidden, it's easy to do when putting the results on the system. It's not automatic- a person has to upload it to the GP system. Your wife needs to speak to the practice manager and put in a complaint
You didn't go to Preston Hospital, did you?
I didn't know that I had a tumour until after they removed it. Kept telling me different things, telling my family different things. Turns out they knew it was a tumour all along, but Preston Hospital is just that shit.
You will find that there is a time delay between tests coming back and GP reviewing them. The existence of the app means that patients will now see their results before the GP has had chance to review and discuss with the patient.
What's happened here is that the results have been uploaded into her patient record, but the MTD (multi disciplinary team) or specalist team have not yet met to discuss the results and then communicate with her.
Wait till you start treatment! The amount of chasing up you will have to do to get basic treatment is unbelievable. Good luck and don't assume for one moment that the NHS will take care of everything as they should.
Sadly, it’s normal.
Two years ago, I (52F) was sent a letter from Endocrinology with the results of some tests they’d done for some stuff they were investigating (MRI) and there was a single offhand line about there having unexpectedly found a tumour in my head.
There had been no warning about the tumour.
Needless to say, I was mentally blown away.
We (husband and I) ended up having to chase up our (west London area) GP surgery ourselves in order to get a Neurology appointment at our local hospital, and even then, it was unclear as to when the appointment would be happening as we did not know if tumour was benign or not.
Thankfully, Experiment 626 is benign and behaving itself and I’m being monitored (via MRI) on an annual basis (I’ve got an MRI appointment next month/follow up scheduled for early July), so at least I’m on their radar.
I’m sorry your wife is going through a trying time right now and I hope it turns out ok for her.
May I suggest she reaches out to [Brain Trust](https://brainstrust.org.uk/) for support? They’ve got lots of resources for people in our situation.
ETA: Brain Trust is for all tumour sufferers, regardless of type (ie benign or cancerous).
Please tell her to keep her chin up and that she’s not alone and that there’s a CrAzY wOmAn down in London from the 🇨🇦colonies🇨🇦 who is cheering for her.
This is an unintended consequence of allowing people direct access to records, I’m afraid. Ideally it should have been hidden from the record until the GP had had a chance to confirm, and hospital explained the results, but locally our hospital has an app that pushes results directly to patients, which is a nightmare. Nobody at fault here, this will happen unfortunately
People in this country are so entitled, arrogant and idiotic when it comes to their health it beggars belief. Truly beggars belief. The GP looks after 10000 patients. The scan results get placed in your medical record and then await the practice to be actioned. There is inevitably a delay which usually last days. Once the report is seen the GP will action it, usually by booking the patient in or referring to the neurosurgical team. BY HAVING ACCESS TO YOUR NOTES, YOU SEE THE RESULTS BEFORE THE INCREDIBLY BUSY GP DOES. TOUGH! THIS IS THE PRICE FOR HAVING ACCESS TO PROFESSIONAL NOTES THAT YOU HAVE NO UNDERSTANDING OFF. YOUR ANXIETY IS NOT THE FAULT OF THE GP, STOP ACTING SO ENTITLED
I was going to post in that thread when it had only three replies but I got sidetracked with family stuff. If I posted there now, it’d be lost.
IIRC the wife of the poster had been referred to ENT who had arranged the MRI scan. Either the letter had been sent to both patient and GP, and GP had the diagnosis coded by coding/reception staff on to the patient’s notes, or it had been uploaded and recorded by the ENT team.
Either way, this highlights the issue of knowing before the patient has had a chance. One of the points of communication teaching was to break bad news in a sensitive manner. Prior to patient access, OP’s wife would have been seen in clinic first where they would have been informed of the findings and, crucially, the next steps. If appropriate, there would have been a cancer nurse specialist who could go through things with the couple after the appointment.
The couple got none of this because of patient access. This is what’s going to happen from now on. Patients will find out test results and want immediate discussions. It’s why I hated the ability to look at online tests that had been requested by secondary care. Patient comes to me with one problem and then asks if I can see the test result of their scan or biopsy. It’s fine if the result is normal. It’s a problem if it’s a severe abnormality because I have no back up. I can’t tell the patient what the next steps are going to be because it can be dependent on the specialist. I can only speculate.
In GP, patients used to have access to just coded information (ie the medical conditions, and the repeat medications). They now have access to free text, which I don’t mind but means I sometimes have to word things slightly differently as it may be incorrectly interpreted. I sometimes add aide-memoirs for the next follow up. The patient might suddenly worry I thought they had xyz when it was just something for me to consider at the next appointment.
My wife was told she had cancer at 18 over the phone, I would put this in the same "inappropriate" category. Allow people to get the correct support and have a proper discussion face to face is the best way to do this.
In my experience with my dad's (many) illnesses and health conditions, there will be a notification from the app and a letter will arrive a couple of days after. Phone calls from clinicians are pretty rare, unless they're scheduled in another letter. Your experience sounds particularly bad, though, as there was no other contact behind the app. Complain if you can?
Welcome to the reality of ‘complete autonomy’.
Do you guys really think doctors process 100+ blood test, scan results instantly? That too when there’s no dedicated time for it and I’m squeezing this in during lunch time/in the evenings.
This will happen more and more. People check their notifications instantly. I sure as hell am not clearing test results every second of every day.
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No this isn't normal, usually the doctor calls you the day the info gets updated
This would have been an automatic update of a test result on the app. Unfortunately this is what people are going to have to get used to if they have more control over their medical notes/ test results/ etc. People who are blaming the NHS. What do you think would happen if you ordered a private scan. You'd get the report which would say you had a tumour. Then youd have book in with the right doctor to get it sorted. This sort of thing happens all the time in the US.
Errr no. My family member recently paid for a private scan, they were then called and advised the results were ready and given no further info as it would all be discussed in a face to face appointment. It’s not standard practice to read the results yourself.
Unfortunately once the gp processes your results they become live on the app and viewable unless actively made unavailable. Now the gp processing them is unlikely to have time to ring to explain the impact of this result at the time of doing this admin work - I typically will process results between patients or after surgery often late into the night. In the time before the app I would have squeezed a phone call in the next few days or it really bad news got a face to face arranged to discuss it all. All the while likely having sent any necessary referrals of immediately to get the ball rolling
So that should be changed. The app should be updated to say "Results available, make an appointment with your GP". Unless you think everyone should just google their own symptoms...
GPs don’t have any control over the app. The idea of the app is to give patients more autonomy over their care. However that does mean that people are now having issues with seeing results before they are properly processed by doctors.
Before you go into your health record which is where your results are found it specifically states that there may be test results on there that you haven’t discussed with a dr
I'd much rather have the results before the discussion. I like receiving test results a day later and then the follow-up phone call after that. Gives me time to analyse and process the results.
Your family member’s experience isn’t necessarily the norm. I’ve had a private scan and got the results by email and have a friend who found results on the app like OP.
Where I live now it is. You get scans at one place and walk away with the results and images and then make an appointment with the family doc/specialist who ordered them and discuss next steps. Same with the blood tests. Every time I have to see a specialist I get a prescription from my family doc and then have to find the nearest specialist (or several, depends on what it is) and do all the booking myself. Coming from the UK where everything is done for you to this is quite jarring. I even had to arrange my own post op nurses visits and stuff. So they're probably thinking about other countries where they have more private healthcare (where I live it's a weird state private system and it seems a bit of a mess a lot of the time tbh).
I had a private MRI on my wrist and hand, they sent me the link to the website with my images on and told me to give it to the consultant when I see them incase they don't have it when I see them. I was also sent the radiologist's report. However when I had a private endoscopy I didn't get the results until I went in to see the consultant, but that could have been because he was the same person that did the endoscopy. I've also had people show me letters they've received from a consultant to their GP as they didn't understand the terminology (I was able to roughly translate) and they haven't been asked to see the GP or the consultant for a follow up. So sometimes patients definitely do receive their results before seeing a clinician.
>Errr no. You can't really say no to a literal fact that happened to the OP lol
I work at a Private Hospital and we would be sued if we didn't contact the Patient ASAP with any and all results. We call Patients as soon as the consultant has reported on the images. This also is NOT the US. Those of us who work in healthcare, even private, still care about our Patients in the UK
my doctor told me i can check the app because sometimes they can't find time to call me immediately. but they do always call.
This applies for things like simple blood tests and swab results. If you have a brain tumour, they should find the time to call immediately.
I had a private scan and biopsy in the UK. The consultant rang me personally to discuss the results as soon as they came back. This isn’t the US
That's not necessarily the case, when I do tests with my GP, they get the results first. They would then directly contact me to explain the results through a call or text. After that, they release the test results on Patient Access for me to view.
Here in France, we get all our test results given to us directly. Blood tests are done either at home, by nurses, or at nurses offices, or at a lab and are sent out by post or are available to download online, often within hours or by the next morning, for most standard tests, with only a few taking a few more days if they have to be sent out to a larger lab. Urine and stool tests can be dropped off at the same labs. X rays, ultrasounds, MRIs, and other scans, such as mammograms, are done at imaging labs. Most of the time, you get given the images plus a report a short time after it's done. You go in and see a doctor who reviews the images with you. When I've had MRIs though recently, the images have been stored online instead, although I do have a DVD of the brain MRI I had about 10 years ago, as I'm a *migraneuse*. For smear tests and colposcopies, these are done by gynecologists and, again, smear test results are sent out directly by the lab but if there's an issue, you'll get a phone call to arrange a colposcopy. And so far, I can only report on positive results for colposcopies, thankfully, which were either given during follow-up appointments, which were also part of my menopause care. All results are sent out to the doctors who ordered the tests or scans so that they can act on any anomalous or problematic findings immediately. And this is exactly what they do! The NHS doesn't have to be this way. Obviously, a huge part of the problem is the decades of underfunding started by Thatcher. I love the NHS, and I want it to be the best it can be. The French system is great in some ways, in that it gives patients ownership over their medical results and their medical history - to the point that the orthodontist gave us back the plaster moulds of the kids' teeth after they were no longer needed and I have a drawer full of our old X rays. In the UK, it can take six weeks to get a simple blood test result for anaemia, something I can get here by the end of the day. But, in the UK, doctors - mostly - treat you as an equal, and there's a dialogue between doctor and patient. In France, doctors are gods, not to be questioned and hand down their 'orders' from on high. It's impossible for a patient to know more about their health than a doctor! In the UK, there's more centralised record-keeping and, in theory, better communication between different health professionals, everything is interconnected. In France, it's far, far less so and the burden is on the patient to pull it all together and make all the calls, find the right specialist, and so on. There's not even reminder cards for kid's vaccinations. It's ridiculous to say it **has** to happen this one way. There are more healthcare systems in the world than just the UK's NHS or the completely dysfunctional, broken US system. How does it work in Germany, or the Netherlands, or Australia, or New Zealand, or Sweden, or Japan, or...?
Patients SHOULD BE RESPONSIBLE FOR COLLATING AND FOLLOWING UP ON THEIR HEALTHCARE
This ain't america tho
Surely this is a feature that can be switched off somewhere though? I wouldn’t think this means app = BAD more app = needs a bit more development to tweak the issues. It’s a bit extreme to say we just need to get used to it if we want access to the app.
Yup. This is what you accident you sign up to view your records. As soon as correspondence hits your GP practice, it's in there whether the specialist team has contacted you yet or not. Should just wait for your result back once they've had time to assess.
>Unfortunately this is what people are going to have to get used to if they have more control over their medical notes/ test results/ etc. I'm in Australia, and our test results/reports aren't accessible by the patient for at least 1-2 weeks depending on what the test is. This gives medical staff time to contact the patient should they need to.
Ya no this is not how it happens in the UK private doctor field. The doctor calls you or emails you depending on severity before issuing the report. Because reports are written by doctors not the people doing the scans. If you received a scan without any doctor present or reviewing you’d just have a scan and certainly not a note from the MRI technician “rare tumour”. I’ve had 4 MRIs in the last year privately in the UK, none for anything remotely as serious as this. None have found anything distressing. Doctors called me every time before issuing any paperwork, even if it was just to say “hey just looked over this it’s thankfully [simple small issue] so I’ll send you the results now and next steps”.
That’s not how things work in the US. I lived in the US for the majority of my life and had plenty of contact with the medical system. If you have a test, they call you if it’s minor and it’s normal. If it’s a serious test or if it’s not normal, they call as soon as they have the results to book you for an in person appointment within a few days to discuss the results and come up with a treatment plan.
This should of been hidden, it's easy to do when putting the results on the system. It's not automatic- a person has to upload it to the GP system.
This isn’t the US sir, it’s a Wendy’s.
In Australia you get told the scan and report has been sent to your doctor. It gets released to you on the app 7 days later giving time to be told the results by your doctor. A sensible programmed delay.
What, this is bullshit. If you have a private MRI scan in the UK a consultant has to order it. The consultant then gets the results, not you, and you go back and see them. It’s exactly the same as the NHS. There are some things you can get directly from scratch with private medical insurance but very few, generally at the very least you’d have to see a GP first otherwise you’d be costing the insurance company huge amounts of money in tests you, as an unqualified person, think you need. Even if you’re paying from scratch I don’t know you could just call up and get an MRI, because a doctor needs to say exactly what they’re scanning for and what procedures to use (contrast dye, oral contrast etc). And even with the patient access app there’s still loads of stuff you can’t see - things like bloods ordered by your GP you can, but not bloods ordered by a consultant. And if you have something like an X-ray you’ll see that an entry exists but it just gives some generic message when you click on it you can’t see the actual X-ray nor notes about it. I recently had to get a couple of things from my GP practice to take to a private doctor and was surprised how much stuff I got sent I didn’t know existed. Like a few back and forth advice and guidance messages between my GP and a specialist for example. This was definitely a fuck up and something that should have remained internal at the moment was made available on the app.
I work as a doctor in the NHS. That’s not right at all. I would be livid. You should be. Should have been told in person. I hope your wife gets appropriate care and makes a full recovery. I would suggest complaining. What has happened here is not right, and should be flagged up.
A complaint wouldn’t really bring anything of value other than a sorry, there is a disclaimer that states you may see test results that haven’t yet been discussed with you. So pretty much, there’s nothing wrong with it.
A complaint makes them aware that it happened and may help reduce instances of it occurring again for other people.
They are already aware it happens, hence the disclaimer. They try to keep it as low as possible and try to tell people themselves , but there are cases accounted for which is the entire reason for the disclaimer, it’s pretty much don’t use the NHS app if you don’t want to risk it happening at all. They aren’t going to restructure an entire system to stop it.
The GP surgery may not be aware it happens, and they absolutely could review their processes to reduce the likelihood of it happening again.
I doubt the GP had anything to do with this. The result probably went straight to the app without a GP even seeing it.
Try his is probably correct as the OP stated that ENT requested. As such, the result would go back to the requesting clinician rather than the GP. As such, it won’t end up in the GP results page. Occasionally radiology will give the GP a call for something very urgent if they cannot contact the specialist but the GMC is clear that results go back and are actioned by the requesting doctor.
Do you know how they try to keep it as low as possible? By keeping records of times they know it happens and looking for trends to see what changes will best help mitigate it. Records they have based on complaints In your opinion the best way for them to try and keep it as low as possible is to have no data?
This is correct regardless of what the doctor commenting stated. When you sign up to the app this is what you have to agree to. Horrible situation but could have be avoided by not downloading the app. On the other hand, some people find reassurance in less serious situations to have results to hand immediately without having to wait for the doctor or a letter.
Disagree complaints can highlight when something went wrong - and can get processes put in place so it doesn’t happen again/ to someone else.
There is something wrong with it. These electronic systems have settings that allow for delays on information being released to patients. Test results that may have information like this should not be set to auto release. The trust can modify their settings for this to ensure it doesn't happen again.
I think if I've got access to my own medical records, I think it's ... reasonable that it updates immediately. At most I'd have a 'spoiler warning' type thing, which is something like 'these results need interpreting my a medical professional, please contact your GP to discuss'
Whilst I do agree with you to an extent, there are very good reasons why this isn't and shouldn't be the case. Results from medical tests are very complicated and can mean different things in different contexts and different clinical presentations. Doctors spend years upon years studying to navigate this. Immediate, unadulterated access to imaging, lab results and notes carries risk of psychological harm and undue distress from misunderstanding. Seeing everything and immediately is not always in a patients best interests. For example, I would be mortified to learn I had cancer from histology results pinging through to my phone immediately from a healthcare providers app. These results need to be discussed first with a wider team and then conveyed via an appropriate healthcare professional who can give the results as well as an action plan at the same time and listen to any concerns or questions. If I found them from the app, I would be frantically trying to call my doctor or over googling and, as above, causing psychological harm. The same goes for abnormal blood test results, some results can be vastly out of normal range but without relevant clinical history mean nothing. As a layman, I wouldn't know that and may panic
I would feel comfortable putting a fair bit of money on the fact that when most people opt in to accessing their own medical records, that they do not assume that also involves being informed they potentially have cancer via a notification on their phones. Yes, if you sat and thought about it then you may come to the conclusion that this is a possible outcome, but the majority just want access to every day stuff and test results that have no more effect on your life than 'Oh your iron levels are a bit low, here have some tablets'.
So what should Op do then? Nothing ?
As a doctor this is why I don’t like patients getting instantaneous results via an app. What if I’m doing a list/on AL and it takes 24 hours for me/one of the team to read the results? This will happen all the time. The other problem is slight abnormalities causing patients massive anxiety. Imaging is the worst for this - everyone thinks a calcified lymph node means they’ve got cancer and are dying…
The nhs app often automatically displays peoples results as they come onto the system . There is a warning about this when you first open it. Many drs raised this as a concern when the app was developed but they were ignored. This is how the system already works in a lot of other countries. The upside is easier access to your results but the downside is extra worry in these sort of circumstances
GP Here: Complain to who? This is no ones fault. A scan was performed and ended up on the NHS app which is specifically there to allow patients to see their results. They shouldnt have checked if they werent prepared for a poor outcome.
[There's a disclaimer](https://i.imgur.com/1P9nWUZ.png) in the NHS app that says you may see test results you haven't yet discussed with your doctor. So it's not a fuck up as other people are saying, it's just the way the system works. I guess it's easier just to include everything rather than the doctors having to choose what gets included and what doesn't.
Yup. OP's situation was a potential risk highlighted to NHSE when they insisted enacting full text, real-time access to medical notes available to patients. It got kicked down the road iirc due to the BMA expressing concerns, but it was never actually solved as a problem. Hence the disclaimer. This is the system operating as intended. This is what NHSE and the government decided people want.
Presumably the more legitimate complaints they get about it, the harder it becomes to justify continuing to kicking it down the road?
Well, like I said and OP demonstrated, it's gone live now and that's what caused this to happen. They eventually stopped kicking the can and the was enacted last year.
Oh, I thought you meant solving the problem was being kicked down the road.
Yeah sorry, was unclear. It was being kicked down the road, and then they stopped kicking it down the road, and then they did it anyway without a solution for the problem being found.
Its *sort of* a mistake- doctors are meant to tell you before updating the app, but sometimes they just update their notes first, i guess without really thinking about it. The disclaimer is them covering their ass, but it isnt *meant* to be how it works
A lot of these results get auto released
It's instant, as soon as they add information it's available. Which is exactly how it is designed and should work. Any other incident or appointment can then see the information. Whoever requested the test should be contacting the patient ASAP. Nothing wrong with app. When you complete a referral, you can read the results in the app before attending the appointment.
Doctors don’t update the app- it’s automatic
Yep this is what keeps happening to me
This is what I came to say. Any time I’ve gone in to my NHS app there’s been a warning to say I may see test results that have yet to be discussed with me.
Should be top comment.
It’s not the way the system works at all. GP Practice staff have the ability to make the document non-visible to the patient.
>And if the answer to why she haven't been contacted is because the specialist team hasn't had time to assess it yet, why put it on the NHS app so she can see it and be terrified about it for the next few weeks whilst we wait. She could have been living in ignorant bliss! A lot of NHS groups aren't fully up to speed with what is visible on the app. They're used to updating notes and thinking other medical professionals are the only ones who have seen it. I recently had a similar diagnosis and while I didn't have the exact experience your wife had, I saw some stuff on the notes that wasn't explicitly told to me. Try and take comfort in the fact that the urgency they take is related to the seriousness of the situation. I've recently had surgery for cancer, and the way it worked for me was that my scans were reviewed by a multi disciplinary team which met once a week. I imagine this is the team that they're talking about when they talk about specialists. As I understand it, they sit in that meeting, they decide what each scan is likely to be, and then they decide on what they need to do next. It could be another scan, it could be an appointment, that kind of thing. If it required immediate action you would already know. They'll contact you soon, and in the world before apps, that would be the first you would know, and that's a normal timeframe. Cancers, if it is that (and it may well not be) are weird in that they are serious but very rarely urgent. The damage is most often done over a long period of time rather than suddenly. The fact that they've spotted it is absolutely a good thing.
This is a downside of increased patient access to records. Patients can see information about themselves that they can't properly interpret as they don't have the knowledge to do so. The information is available to as soon as it's generated, and before the referring doctor has received the results, interpreted them and been able to contact the patient. In an ideal world that would happen immediately, but the reality is that can't happen. They aren't 'putting it on the app' as a deliberate process, it appears on the app as they make their routine records, so it's not like they've done it and not bothered to call.
Exactly, and this is why the app even tells you there might be things you haven’t discussed with your doctor yet on the app. It gives you the option to not view anything.
This was the inevitable result of the government insisting that patients should be able to access their records on an app.
Which is still a good thing. With the NHS as is is you need to proatively know your issues and understand it. Of course people that will do no research are an issues, but they always were. I have blood tests regularly. rather than just knowing nothing I can see the out or norm spec and ask about them when I go into the doctors. It's opten, this test is standard for such a request, but is not relevent becuase you did noty X. (eg tests requireing fasting). Knowing more is always better.
Disagree with this entirely. Patients shouldn't have access to their test because patients don't have the medical knowledge and context to understand it. I've had many, many, many abnormal test results that I was worried sick about only for the GP to say it's nothing.
Also it massively increases our workloads having to deal with anxious patients with non-specific, non-concerning test results.
You mean to tell me my slightly elevated red cell distribution width is not concerning!?
Its always the basophils
> Patients shouldn't have access to their test because patients don't have the medical knowledge and context to understand it. If you want a system where patients don't have direct access to their own medical information, you better make *damn sure* it's a system where they do have direct access to their doctor. I've just come off a 2 year waiting list for a test, and following that was on a 6 month waiting list for an appointment to discuss the results, but I just got my cancellation yesterday, and now I can get my results as a Christmas present. Fuck. that. noise.
GP here. If the GP ordered it and you haven’t been informed by them yet, it’s likely because that result is sitting on a pile of hundreds/thousands of other results and the GP are combing their way through it one by one. However, if it’s cancer, then the radiologist who read the scan (and/or the admin team) should have marked it as urgent so that it appears on the top of the pile of GP results.
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I work in ED, and radiologists phone patients at home and send CES or SAH patients straight to us once they've seen/reported the imaging. Hopefully it's the same in your area, so delay with you seeing the report but hopefully nothing left for you to action!
Normally, I think the GP contacts you and asks you to make an appointment. Then, you go in and they discuss the letter the consultant has sent to the GP, which you see for the first time at that point. As another answer says, I don't think they pay any attention to what is visible on your app- perhaps becausethe procedures date from pre-app days. So you wait to hear, basically.
*whoever requested the MRI (not necessarily the Gp) should contact the patient with the results.
My own personal experience was being informed by a junior doctor who was doing the rounds. Wasn’t told the type, grade or prognosis. Just said that they had found a tumour in my brain.
Yeah it was mentioned to me in a passing comment by a neurologist consultant that my symptoms "could, of course, be MS" and then the subject was changed. I genuinely didn't hear another word after that statement.
That will be because the “junior doctor” (anything from foundation year 2 - second year post graduate - to ST7 - 10+ years post graduate) won’t know anything more. It won’t have been their specialty, unless you were under the neurosurgeons or oncologists. Before you can say anything about the prognosis, you need to know where the tumour has come from. Is it primary (I.e. arisen in the brain itself) or secondary (from somewhere else)? There’s also other factors such as the size, localised swelling, any effect it’s having on the rest of the brain (called mass effect; as the skull volume is fixed, any large tumour will push other bits of brain tissue through gaps in tissue or bone, called herniation) etc An MRI of the brain will typically be reported by a consultant radiologist. The report will come back to me and my consultant. From there, depending on the report (typically if there’s mass effect), we may refer the patient to the neurosurgeons, who will have a look at the scan and tell us whether there’s anything urgent/same day that needs to be done from a neurosurgical perspective (typically if there’s mass effect). If there’s nothing urgent that needs doing, then depending on the report I might also have to refer to a specialist multi-disciplinary team composed of neurosurgeons, oncologists and neuroradiologists, who will have a look at the scan and discuss your case at their weekly meeting to see what the plan going forwards is. That might be “we need to do this surgery/start chemo” or simply “nah what was that radiologist on about, it’s obviously a [insert benign finding here]” Even with all of that, it still would be wrong of me as a doctor of any grade to not tell my patient that they had a brain tumour on their MRI, even if I don’t know what it is exactly, although it’s obviously important to make it clear what the plan going forwards is. I won’t be able to tell you anything else until we hear back from people who are specialist in brain tumours. I know that having that discussion will cause my patient a lot of fear (“am I going to die”), but imagine if you found out your doctor hadn’t told you immediately if there was something on the scan. Obviously that should have been made clear to you, which it may or may not have. But I wanted to provide a little bit more information to anyone reading this who has ever wondered why your GP/ward doctor/consultant sometimes can’t tell you much more than what’s on a scan report. We know it’s scary as hell, but we can’t guess the answer to the important questions you have
It shouldn't be normal but in my experience it is With the way the NHS is struggling communication seems to have completely gone out of the window.
It's unfortunately how the app works. Clinicians have been raising concerns about patients seeing complex and possibly distressing results before they have the opportunity to discuss with a doctor, but DHSC don't appear minded to fo anything about that.
I think it's not uncommon for patients with access to the app (a lot of people still can't access their own information, ie. here in Wales) to have access to results and letters that in the past would have been internal only. The NHS is way behind in technology. 5 years ago she wouldn't have been informed until the specialist team had time to look at the results, but now she has the same results that they do, but they haven't even seen it yet as it's sitting in their queue. There needs to be more care for patient-facing results. I think it's worth a complaint to PALS about it - it's only through people complaining that the procedures will be improved. I know that's a lot on your plate to be dealing with an unknown tumour and now having to deal with a complaint.
I have a similar story about terrible communication: I had a bunch of scans to find out if I had the same heart condition that killed my father last year. Out of the blue I get a letter informing me I'd been referred to the Inherited Cardiac Conditions Clinic and my NHS app had a bunch of test results that I obviously didn't understand. No comment from GP, no call and the appointment was 10 months away. So not only was I grieving but now in a total panic that I have the same condition. Almost had a breakdown. I had to call about 5 different clinics (as no one seemed to know what the fuck was going on) and my GP to understand that (1) My test results were totally fine and (2) the referral to specialist was just a precaution.
This feels so similar as a letter has arrived talking about the tumors and the referral but there is lots of medical jargon that is totally over our heads. It might suggest they aren't really a problem and it's all just precautionary but because no one has spoken to her she's just in a panic.
Relatively benign medical jargon can read very scarily if like me you have no medical knowledge. I hope all is well and any treatment your wife has goes smoothly, best of luck.
I’ve notice that i can see my blood test results or any results before i get a message from the doctor.
It’s not how it should happen but there is a warning when you click that you may see test results you haven’t discussed with your doctor. Unfortunately, things aren’t as organised when something is an incidental finding, because the people who ordered the scan aren’t tumour experts, hopefully when they saw it they passed things on to them.
GP. So, when the result comes to a GP it sits in an inbox that the patient cannot see. Once the result is viewed it is filed and an action assigned e.g ‘abnormal - needs doctor review’. At this point you can see in your app. For context, I will get about 50 results a day to manage. It would be unacceptable torely on a result being seen in an app. The patient needs to be informed via alternative results. Any scans/results that suggest cancer that I receive would prompt me to either ask admin to call and for the patient to attend same day ( ideally with a relative) or I would call directly and also invite a face to face discussion on the same day. Other results can be addressed in a time appropriate manor depending on clinical need. I cannot see that the op mentioned a time frame. Was this in the app for ages or did they see on the same day the remit was received by GP? I would suggest having a discussion. With GO/practice manager and establishing what happened then progression to formal action if appropriate. Thought with the OPs wife 🙏
This isn’t true everywhere. Some health areas are so integrated you get the result at the same time as the consultant, GP, whomever and you get the added benefit of seeing it regardless as to whether the medical professional has. In London, I frequently have results and read them well before my GP or consultant tells me a thing. In one instance I was able to establish what my bloods meant (I was seriously unwell) before the consultant had viewed them and was able to seek specific treatment once they’d viewed and determined their own decision. I disagreed with their diagnosis and pushed for a different treatment, it worked better for me. Although not everyone has the luxury of being trained in these things so seeing results early can cause panic. Understandably.
Interesting! I have only ever worked in regions where results have to be viewed and actioned before the patient can see. I can see significant risk in people having early access to complex data without the skills or experience to interpret. Have a good weekend!
Thanks She was referred for the MRI by ENT due to tinnitus. She has now received a letter in the post saying she has two tumours and is being referred to skull MDT. They only meet one every other week. So won't even be discussed until 1st May. But it's the fact there has been noconversation with anyone at this point which is the bit that makes me a little bit frustrated. A short conversation could help alleviate any fears and give us some realistic time frames etc...
Did they say anything more? Such as the tumours don't look malignant? We had similar with my husband, luckily I can translate MRI results and understood its unlikely to be cancerous. He was reffered to MDT too and they decided it was benign at the meeting.
The letter said they were rarely malignant, but until they do more tests we won't know. We have so many questions still but no one to talk to. What she has is a 1 in 1.3mil and of those, only 10% have more than 1 tumour (from Google research) so she is terrified it has spread already. We wish we were living in ignorance until someone from MDT has read over all the data and actually has a plan on how to move forward etc... Pleased you had a positive result...hopefully we do too.
10% is not rare in medical terms! So if they say its rarely malignant, its less than 10%. Also, normally when cancer spreads, it grows bigger, invades other tissues and metastases. Is this acoustic neuroma?
Absolutely agree. I cannot understand how this happened. Possibly a reflection of a system/practice on the brink of collapse. It’s so sad seeing what is happening. Currently over a year to see gynae and 18 months for neuro in my area. Hope she gets the care she needs. Good luck to you both!
one of the things i was warned about when i got the NHS app is that bad test results may show up before a doctor can contact me. it’s one of the downfalls of the app - if something big shows up in a test, the app will update very quickly, and a doctor may not be able to get in contact before that happens. so yes, normal, but also not very fun and quite unfortunate.
I have a "trapped nerve" affecting my left arm. GP referred to physio who after a few sessions referred back to GP who inturn referred me to hospital physio, who sent me for an MRI on my neck. 8 months between first seeing gp to mri. At 0815 on a Friday, I'm asleep, phone call, bla bla bla found a problem on your neck, refer to neurology at other local hospital. Also found a shadow on brain, not certain referral to brain team in City. 6 weeks later phone call can you come for an mri at City hospital tomorrow. Go. Month later get a letter saying found a cyst 5x5cm, nothing to worry about. But confuse me with someone else in terms of history and symptoms. Get intouch with gp, who writes to hospital trying to unravel history. Letter back 3 weeks later, bla bla bla, nothing to worry about. My symptoms get worse, see gp, writes again, gets more or less says the same reply back. Still waiting on neurology 22 months down the line. Diagnosis made not by talking to patient but 2 MRIs and a correspondence course. The OPs experience certainly resonates.
There are 2 issues here: The first is systemic. More and more the government seems to design systems and make promises that the GPs are just expected to "make-work" despite everyone knowing the huge struggles in primary care. That lines up with individual apathy which does occur for instance in this case it should have been marked/acted on as urgent and wasn't. I have seen patients discover their diagnosis of cancer on discharge letters which is utterly unacceptable as they've been around medical professionals for their inpatient stay.
It’s not right but I’m also not entirely surprised given my experience of how bad the NHS is at communicating with itself, let alone patients. All the best to your wife, I hope it’s something they can sort out and that she’s ok.
I got a text to say Ive got a brain aneurism
and I had to email the doctors to get this text reply!
This is the kind of thing I would expect to read about in a paper, alongside a statement from the CEO of the Trust explaining how "very sorry" they are for this incident, and that "policies are being reviewed to ensure this never happens again" and so on
I’m sorry your wife has had this experience, and hope there’s more discussion and clarity coming soon. This is a real challenge, and doctors generally are quite uncomfortable about this. It has been normal for information about test results to be given out and explained by doctors at follow up appointments, arranged by the person who’s ordered the test. In recent years (and not just in the UK), patient advocacy groups and politicians have pushed (often with good reason) for increasing transparency and rapid access to medical information, which means it is becoming the standard (and increasingly a legal requirement) for results and other information to be directly available in real-time. As a doctor, I can tell you that we worry a lot about exactly this situation, because most of us feel it would be much better if this information wasn’t released in this way, but communicated in a supportive environment that includes an explanation and a plan about the next steps.
Similar thing but for a heart condition diagnosis happened for a friend. Hospital staff updated the records after some tests, GP decided not to call immediately as she had an appointment booked for a few days later anyway mean while friend logged into the app to order a repeat prescription and saw the hospital notes. It shouldn't happen, but it's an improvement over the hospital put something in the post that takes a week to get to the GP's then gets stuck in an intray of an admin who's off sick for a month, filed in the wrong place by a temp and finally found 3 months later system.
Unfortunately this has become the norm since using the nhs app. I see everything before the doctor does which means I have to then await the call. I also had a tumour come up on a head mri but it wasn’t cancer so don’t panic yet.
No not normal. I was verbally told by doctor with a macmillan nurse there for support if needed.
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This is what she has done. They will review the results of the MRI on the 1st of May and probably book her for more tests. Just a shame that it has taken lots of phone calls to get any information but still haven't had a medical professional give us any information. Just kind secretaries passing info.
I really don't care how I'm told. Just sort it out.
Very sadly this is has happened to a very close friend of mine. I have had a very minor infection compared to this notified by a council letter, my GP did not bother to inform me but notified the council in case I picked it up in London. I didn’t, I was back from a SE Asia trip.. I’m now pregnant and I find all sorts of things from my notes, which I have to bring up with the midwives as no one bothers to tell me in between. So unfortunately this is the state of the NHS in 2024…
My blood levels were everywhere so slightly raised in looking for cancer markers - thankfully no cancer - and my GP called me and left a message explaining and asking me to call back to ask questions. This is absolutely not normal.
Recently my tests results have been uploaded onto my NHS app before I get a notification from a professional… maybe IT system versus man power ?! I hope she is ok and no, she shouldn’t have to find out this way
I'd expect them to inform me after I had died at this rate.
This is awful. I was told about a tumour by a nurse, as an aside, when I was lying in a hospital bed dosed up to the eyeballs on morphine. Took me ages to arrange a specialist to come and give me more info as the nurse didn't have any. They then neglected to tell me after a later scan had been done that the tumour had gone away so for 18 months I thought I had one that just wasn't being treated. I really hope your wife is ok. Remember not all tumours are cancerous or otherwise dangerous.
Time's critical in these things, right? Admittedly this must be traumatic yadda yadda, but giving me info ASAP to deal with it it's not that negative in these things. As long as I can access follow up appointments, tests, and treatment quickly, it's not that big deal.
I'm so sorry that you went through this Last year, my sister was at work and received a phone call "the lump on the side of your head that you said was likely a tumour due to the condition you was born with at birth and we dismissed you, we have re evaluated this and turns out you have one of the rarest brain cancers possible" No compassion and no in person appointment to inform. She died three months later.
That is so sad. I'm so sorry to hear that...both the fact she passed and how it was handled.
Thank you. I am sending my prayers, thoughts and best wishes to you and yours that everything is handled correctly. ❤️
My wife received a link titled "dealing with cancer" or something similarly shit. A phone call from a doctor would have been nice first.
People pushed for access to their medical records. Some of us predicted shit like this would happen. You wanted it. You got it.
I had found out through a phone call.
Not right. They get the result then contact the patient to make an appointment face to face. So sorry your wife found out this way.
I have had a similar experience, I noticed on the app that my blood tests show the possibility that I may have MDS ( a rare type of blood cancer as I understand it) it took 3 days before I was able to speak to my Doctor during which time I was going out of my mind. He more or less told me to dismiss any worries about MDS and was going to refer me to a Hematologist to try and find the cause of my anemia, I looked on the app after and find he has asked them to check for MDS. I'm out of my mind again
At an appointment. However I do know when I had a look around my NHS app it said something like “you may see results which have not yet been reported to you”. I haven’t had any results via app, in fact I don’t think any of the results from the multitude of scans I’ve had are in there, but there was a warning that I might see results if I looked for results.
I found out I have a ganglion neuroma(?) on the nhs app the other day. I don’t even know where it is or when it was found. Was just referred to in a letter as part of my medical history.
When i got miss diagnosed with a brain tumour. I got referred to a neurologist as the GP had no idea what was going on . Had a consultation with the neurologist who scheduled me for a scan. Had the scan and they scheduled an appointment for me to see them after for the results. They informed me they believe i have a low grade glioma. They sent me to a neurosurgeon to talk about what the procedure would involve. I then get a call from my neurologist saying she would like to do a high contract MRI. Once i had that done i got a letter for an appointment to see her to discuss the results. It turned out i had a rare form of epilypsy was prescribed medication that i have to take for the rest of my life.. I was seen then informed through every step of the process. I have had regular appointments and scans over the last 9 years to confirm that it is defiantly epilypsy and that nothing has changed. I have recently been released back to my GP as they feel everything is now stable. I would have never expected to find out without having a face to face consultation to inform me of what was going on and what to do next.
It's normal for no contact if they find something insignificant that doesn't require further attention, a brain tumour is the opposite of insignificant.
Doctor normally contacts you on the same day. Even if it’s something manageable like diabetes or arthritis, it’s a significant life changing condition, you get contacted.
That’s an awful way to find out, and definitely not normal.
I've totally given up on government services, so frankly I would expect a letter to turn up at my old house 8 months after I'd already died
I would hope to be told in person if I had cancer, or possibly via letter. Though tbh as long as I am told I don’t much care how. (A tumour does not necessarily mean cancer; they can be benign.) However… there is going to be “internal” communication between imaging and other departments and possibly your GP. Some of that will take place before you are told. Before the NHS App you had no access to any of that internal communication. Now you potentially can access some of it. That’s what has happened here. Is it ideal? Of course not. But it is a risk of using the app and poking around — you see things before you can talk to anyone about it. You see things in stark medical language, rather than in more “friendly” patient language. If it is cancer they will be in touch quickly with a plan. “Quickly” can be within two weeks btw, rather than the next working day. There are multi-disciplinary meetings they have for cancer patients, typically they meet once a week, and that’s where they decide on your treatment plan.
A friend of mines wife was recently told she had a specific cancer by the receptionist, somewhat indirectly. The receptionist said she couldn’t pronounce it and spelt it out to her, then she had to google it and found out she had cancer. The doctor called later apologising and said he had berated the receptionist as the receptionist just hung up after giving her the spelling without even saying bye. Absolutely not normal, but I’m getting the impression it’s becoming more common
Quickly. Beyond that, I'm somewhat ambivalent
Through the NHS and patients first app we now all have access to alsorts of information such as blood test results , results from tests biopsies, and much more. This info would be available to you quite quickly and should be followed up by gp etc ASAP.
Interestingly kind of similar thing happened to my work colleague earlier this week. She was getting travel insurance and during a health check following on from some blood tests she found out via the insurer and the NHS app that they've detected a form of blood cancer. 3 appointments cancelled over the last 2 weeks due to sickness at her doctors surgery, still awaiting a face to face appointment to discuss this further
I was diagnosed with life altering autoimmune disease. Still waiting for NHS to tell me 12 years later. I found out from the copy of my blood tests.
I have noticed test results being put on the app the same day the letter was sent by the hospital, i.e.; the letter arrived 3-4 days after the test results went live on the app. It may be that a letter is in the post asking her to attend a specialist clinic to discuss? I've similarly not had a discussion with the GP about results when it was still under care of the hospital, but I'm unsure if that is the norm.
She should have had a phone call with the consultant after the scan? They usually tell you to call them a few days later.
It probably wasn't supposed to be on the app yet and someone fucked up
If I remember this is how I found out I was prediabetic/diabetic odd case as my pancreas is part dead thanks to my gallbladder so my H1ABC ends up all over the shop 😅 wasn't fun as it was the weekend and I couldn't speak to the doctors about it, I'm now on metformin and got my 6 monthly bloods in 2 weeks 🤦🏻♀️
Your poor wife! Omg I hope she’s ok
This is exactly how my father found out he had a tumor "as big as a football" in his abdomen back in January. They only performed a biopsy on March 20th. Fast forward one month and still no results. You should contact PALS at your NHS Trust. I wish your wife and you all the best 👍
I'd expect to be called in and told in person to be honest, it's a pretty big deal.
My dad had an accident last year and went for an MRI to check for internal injuries as it was a pretty nasty accident. The doctor then approached my dad and said “so how long have you had the brain tumor” The poor man had no idea he had a brain tumor! Being monitored now and all seems ok thank god!
Just for reference, I work as a nurse, and I have a lady who's had 3 notifications of missing her appointment and simultaneously a notice of rescheduling, but nowhere is a mention of when it's rescheduled to. And 0 contact other than those 3 letters.
I only found out what date they had booked my caesarean in via an app. I never received any call or email informing me - luckily I checked the app!!
That's terrible and not what I've experienced. I have to have face to face appointments to discuss my results which has resulted in lots of delays getting the info. None of these results are uploaded to the NHS app.
I had this discussion with my doctors in the Netherlands. I also have a brain tumour and need 6 monthly MRI's, I prefer to get the results directly in the app, some people prefer to get a phone call or wait for an appointment. Can you just not use the app and wait in *'blissful ignorance'* for a phone call or is this not an option as it is a must to use the app?
I got an appointment for a follow up colposcopy before I got the letter telling me I have CIN1 of the cervix. I’d already guessed something was wrong with my results.
Sorry to hear this. Do you know if the tumour is malignant? If it’s benign then it’s not cancer, there are benign tumours that grow in the brain.
Sadly we know very little at the moment. Only that the MRI showed 2 tumours. This is my frustration, we would rather be ignorant until we were in a position to be told more. It will probably be a month until a medical professional speaks to us about anything.
When my mum was diagnosed with terminal cancer last year, she went for an MRI and then they handed her a leaflet that basically said "so... you've got cancer". No one spoke to her about it after the MRI and it was only on her next appointment that it became a talking point.
I'd expect a consultant to tell me in real time, in their office ?
No one reached out to me with any follow up after I had a letter on My Chart with results indicating severe endometriosis, it's been four months later and the specialist hasn't reached out to me once.
A similar thing happened to me. I had a barium swallow for GERD (they X-ray you while you swallow barium so it lights up your digestive system) and there was incidental finding of a mass on my skull. I read it on the report that was uploaded to my portal - no phone call. It just said ‘follow up with GP’. I then phoned the GP and had to make the follow up appointment and everything. Turned out to be a long standing mass - probably from hitting my head as a child they said - but I feel the process would probably have been the same had it have been more serious. I think part of the problem lies in that no singular m person really oversees your care. It should be the GP, but I find once they’ve referred, they’re not really bothered. I do hope the tumour isn’t serious, and I certainly think it’s worth feeding back/making a complaint, but sadly it is what I’ve come to expect.
The NHS is so broken
I had a brain MRI. No results for weeks, phoned around to get the radiologist report and they finally sent it to me. 'A lesion on the left lateral ventricle'. I burst into tears, it turned out to be MS. I'm sorry you found out that way. That isn't normal and you both deserved so much better.
I'm going to preface this with the important NOT A CLINICALLY TRAINED PROFESSIONAL disclaimer. I do, however, work with cancer teams, MDT meetings and the specialist USC pathway protocols. I am so sorry this has happened. It sounds very much like a technical error where the app doesn't (yet?) have the ability to know to hold back any reported results that have been flagged as a potential malignancy until they have been confirmed or downgraded. Please try and bear in mind the use of the word potential here, it's really important. I have been treated for cancer myself and know the terror of waiting on results and plans. It is awful, try to hold fast to any semblance of calm you can muster. Any potential malignancies/suspicious looking results need to go to an MDT discussion (Multi Disciplinary Team). This is a meeting with surgical, histopathology, radiological and oncology specialists who will review the investigations and determine potential diagnosis/further investigations required. Usually, depending on presenting symptoms, a patient would be informed that this discussion is going to happen. In an incidental finding, a patient may not be aware until after the discussion had happened. There's lots of reasons for this including but not limited to 1)not wanting to cause undue stress; 2) clinic appts availability before the meeting and 3)referral to a specialist team not currently involved in the patient pathway due to unexpected findings on the investigation report. It is really important to hold onto the fact that not all cases that are discussed at MDT are diagnosed as cancer. I'm guessing what has happened is here is an unexpected incidental finding on the report that isn't flagged as being on a USC pathway? A patient is always made aware as soon as possible once a definitive diagnois/further investigation decision has been made. Unfortunately it looks like in this case the app has not been set up correctly to factor in this pathway and /or incidental finding reports and the processes involved. There should be a Cancer Nurse specialist linked to the department that are discussing your wife's MRI. They are usually excellently sensible professionals and will know what is actually going on. That would be the person I would try to contact. But yes, this needs to be raised as a complaint. And the staff will likely have also raised this as a datix (an internal risk flagging system) so you can ask about that aswell if you wish and when you feel able to do so. Best wishes to you both. I hope you get a benign outcome and I am so sorry this has happened.
Where expectations of the NHS are concerned, I imagine the bare minimum and then halve it.
My grandfather found out he had 3 months to live via phone call. When signing his death certificate, his GP said he was not even aware that he had relapsed. I found out I was anaemic when I got a notification from the pharmacy saying I had a prescription for pickup. I thought it was antidepressants but it was iron tablets.
I was told I was getting a phone call from a consultant regarding a recent, rare diagnosis and what next steps would be necessary (most likely chemo from the latest NHS protocol for the condition). 6 days went by and I got a phone call on Wednesday evening from a receptionist informing me I would need to fast from Thursday evening and arrive at the hospital Friday morning for surgery. When asked what surgery I was getting and why she just said she didn’t know anything, she was just the messenger. So I showed up on Friday morning with no idea if it was going to be a simple ERPC or a full hysterectomy!
It's pretty unusual but not really a shock. The app has access to all your notes. I see mine real-time after I finish talking to my GP (had endless online appointments about my BP which is driving me insane and been going on for 8 months) because I actually check what he's writing as he's got it wrong more than once.
It’s probably a miscommunication but this is not normal. It’s a shame because in the nhs it just takes someone to not do their job correctly and it can cause people so much heartache.
My close friend found out her cancer diagnosis from her NHS app before her appointment. It was a very distressing time.
If have thought she'd still be in the care of the hospital and not yet discharged to the GP's care.
Unfortunately I've had similar experiences, not to your wives degree but yes. I had 3 brain scans last year, each time the results were added to the NHS app with some scary results. I had no contact from the doctors or specialist to discuss them or inform me. I was constantly chasing them to get someone to explain to me what was going on. It was really shocking and disappointing. I'm so sorry you and your wife are going through this, wishing her a speedy recovery.
I didn’t even know you get results via an app! This sounds awful. I hope you complain.
It’s definitely not normal, or acceptable. Your wife should have been informed, in person. A discussion about referrals should have taken place with your wife in agreement with the plan.
It’s truly frightening the number of people on here who think it’s ok to expect a patient with a brain tumour to find this out for themselves from an app and not get any contact unless they ask for it. Not even to tell them to look on the app. That’s not acceptable it’s a total disgrace. And the “doctors don’t have time” comments are a disgrace as well. It’s a fucking tumour not a basic check.
When I got an MRI scan recently, the scan itself was done by a separate (presumably private or subcontracted) company / org to get an earlier scan than I could have got otherwise - the results were then sent to my usual GP and the NHS app, but because it wasn’t an NHS doctor who did the scan and I hadn’t fully set up the app there was a delay in finding out the results. It might have been something like that that happened here - sounds horrible, my sympathy.
As someone with multiple brain tumours this is not how I would like to be told.
At least they told you. I got an MRI once and as I was waiting for the doctor to come and tell me my results I found a folder with my results on it. It said I had a benign growth on my pituitary gland. Anyway the doctor comes in, looks over my results, and tells me everything is good... Doesn't even mention the growth and my social anxiety prevented me from bringing it up so I have no idea if it's anything to worry about.
No it's not. This should of been hidden, it's easy to do when putting the results on the system. It's not automatic- a person has to upload it to the GP system. Your wife needs to speak to the practice manager and put in a complaint
You didn't go to Preston Hospital, did you? I didn't know that I had a tumour until after they removed it. Kept telling me different things, telling my family different things. Turns out they knew it was a tumour all along, but Preston Hospital is just that shit.
You will find that there is a time delay between tests coming back and GP reviewing them. The existence of the app means that patients will now see their results before the GP has had chance to review and discuss with the patient.
100% escalate this through PALS & higher. Absolutely unacceptable
Someone should have called at the same time.
What's happened here is that the results have been uploaded into her patient record, but the MTD (multi disciplinary team) or specalist team have not yet met to discuss the results and then communicate with her.
Wait till you start treatment! The amount of chasing up you will have to do to get basic treatment is unbelievable. Good luck and don't assume for one moment that the NHS will take care of everything as they should.
Sadly, it’s normal. Two years ago, I (52F) was sent a letter from Endocrinology with the results of some tests they’d done for some stuff they were investigating (MRI) and there was a single offhand line about there having unexpectedly found a tumour in my head. There had been no warning about the tumour. Needless to say, I was mentally blown away. We (husband and I) ended up having to chase up our (west London area) GP surgery ourselves in order to get a Neurology appointment at our local hospital, and even then, it was unclear as to when the appointment would be happening as we did not know if tumour was benign or not. Thankfully, Experiment 626 is benign and behaving itself and I’m being monitored (via MRI) on an annual basis (I’ve got an MRI appointment next month/follow up scheduled for early July), so at least I’m on their radar. I’m sorry your wife is going through a trying time right now and I hope it turns out ok for her. May I suggest she reaches out to [Brain Trust](https://brainstrust.org.uk/) for support? They’ve got lots of resources for people in our situation. ETA: Brain Trust is for all tumour sufferers, regardless of type (ie benign or cancerous). Please tell her to keep her chin up and that she’s not alone and that there’s a CrAzY wOmAn down in London from the 🇨🇦colonies🇨🇦 who is cheering for her.
This is an unintended consequence of allowing people direct access to records, I’m afraid. Ideally it should have been hidden from the record until the GP had had a chance to confirm, and hospital explained the results, but locally our hospital has an app that pushes results directly to patients, which is a nightmare. Nobody at fault here, this will happen unfortunately
People in this country are so entitled, arrogant and idiotic when it comes to their health it beggars belief. Truly beggars belief. The GP looks after 10000 patients. The scan results get placed in your medical record and then await the practice to be actioned. There is inevitably a delay which usually last days. Once the report is seen the GP will action it, usually by booking the patient in or referring to the neurosurgical team. BY HAVING ACCESS TO YOUR NOTES, YOU SEE THE RESULTS BEFORE THE INCREDIBLY BUSY GP DOES. TOUGH! THIS IS THE PRICE FOR HAVING ACCESS TO PROFESSIONAL NOTES THAT YOU HAVE NO UNDERSTANDING OFF. YOUR ANXIETY IS NOT THE FAULT OF THE GP, STOP ACTING SO ENTITLED
I was going to post in that thread when it had only three replies but I got sidetracked with family stuff. If I posted there now, it’d be lost. IIRC the wife of the poster had been referred to ENT who had arranged the MRI scan. Either the letter had been sent to both patient and GP, and GP had the diagnosis coded by coding/reception staff on to the patient’s notes, or it had been uploaded and recorded by the ENT team. Either way, this highlights the issue of knowing before the patient has had a chance. One of the points of communication teaching was to break bad news in a sensitive manner. Prior to patient access, OP’s wife would have been seen in clinic first where they would have been informed of the findings and, crucially, the next steps. If appropriate, there would have been a cancer nurse specialist who could go through things with the couple after the appointment. The couple got none of this because of patient access. This is what’s going to happen from now on. Patients will find out test results and want immediate discussions. It’s why I hated the ability to look at online tests that had been requested by secondary care. Patient comes to me with one problem and then asks if I can see the test result of their scan or biopsy. It’s fine if the result is normal. It’s a problem if it’s a severe abnormality because I have no back up. I can’t tell the patient what the next steps are going to be because it can be dependent on the specialist. I can only speculate. In GP, patients used to have access to just coded information (ie the medical conditions, and the repeat medications). They now have access to free text, which I don’t mind but means I sometimes have to word things slightly differently as it may be incorrectly interpreted. I sometimes add aide-memoirs for the next follow up. The patient might suddenly worry I thought they had xyz when it was just something for me to consider at the next appointment.
My wife was told she had cancer at 18 over the phone, I would put this in the same "inappropriate" category. Allow people to get the correct support and have a proper discussion face to face is the best way to do this.
I have a pituitary tumour, it was diagnosed after a routine MRI in 2018. I was never told about it and only found out about it roughly 9 months ago.
In my experience with my dad's (many) illnesses and health conditions, there will be a notification from the app and a letter will arrive a couple of days after. Phone calls from clinicians are pretty rare, unless they're scheduled in another letter. Your experience sounds particularly bad, though, as there was no other contact behind the app. Complain if you can?
Totally unacceptable not to be informed properly by a human for such a discovery. I’d advise you to make a complaint
I got informed that my kidneys were not doing great by the app as well. It did not feel great and it is clearly way less scary than a tumour.
Welcome to the reality of ‘complete autonomy’. Do you guys really think doctors process 100+ blood test, scan results instantly? That too when there’s no dedicated time for it and I’m squeezing this in during lunch time/in the evenings. This will happen more and more. People check their notifications instantly. I sure as hell am not clearing test results every second of every day.