How long can you have something undiagnosed before it's negligence?

[Jonette]

Just wondering how much leeway medical professionals have?
As in if you've had something for years, when is anyone going to ever ask the question of the doctor(s) 'Eh, why didn't you notice that?'

Legally, I don't think the onus is on the patient to research. It is rather that the Doctor can justify the decisions they make.

Some diseases/disease processes are more likely than others. Some conditions respond to treatment better than others. Different patients with the same condition respond differently to the same treatments and it can take alternatives to identify the best treatment. Many diseases that look like a single condition are in fact different conditions presenting similar symptoms.

Most diseases have a significant genetic element and medicine is only now beginning to give physicians the tools to objectively diagnose for a few conditions and prescribe the appropriate treatment so in most cases, the doctor's judgement and expertise is required. The process for many diseases is inherently iterative. There is guidance for many conditions for diagnosis and treatment but often what seems clear to a patient from Google is something esoteric and is not the likely cause. Sometimes the patient is spot on and many times not. (I suggested one of my friends who I'd met after not meeting them for years gently ask about Ehlers Danlos to their doctor about their child when they'd had unsatisfactory diagnoses for years and it turned out it was the cause of the problems. It has an unusual presentation so had been missed. No magic bullet treatment but the diagnosis helped with managing problems and with social services).

If you have something rare it can be, understandably, quite a struggle to get diagnosed.

It took 4 years and three referrals to different specialists plus countless opinions of doctors who also saw her x-rays to get a name for DD’s rare disease, a diagnosis which is now under doubt but inky because the tumour is not behaving in a way consistent with the most reasonable diagnosis.

On the other hand, some doctors don’t listen. I was turned away from two A&Es despite asking about Caude Equina, a rare complication of a herniated disc that MN diagnosed. Because my emergency surgery was delayed by five days, I was left with permanent issues.

My DD’s case was not negligence, it was what happens when you have a rare condition. My case is potentially a negligence case because I had many of the danger signals for CES, I asked about the condition and was dismissed.

It was a general theoretic question, not anything specific to my own life. I just feel like I seem to be the one diagnosing myself, rather than the other way round. An example would have been when I had some unusual gynae symptoms. I was referred for an US. Nothing too bad came up in that, but I googled and had all the symptoms of womb cancer - that's what I meant about not recognising some symptoms as being such - it's only when you go to Dr. Google and see a list of symptoms that you go - Aha - I actually have that too! So I rang the GP and asked for referral to gynae. But I had to do that - he didn't put two and two together at all - btw it's hopefully not. I suppose my point is that if you go in with a gynae issue, GPs should be able to ask do you also have X, Y and Z? Because a patient might not realise that Z is actually a symptom so to speak.

They've studied for at least 10 years to be fair! You'd imagine they learned something during that time! You'd certainly expect them to know more than yourself!

But yes, some GPs are totally different in their approach to diagnosing you. As in, they'll rule out stuff and rule in stuff during the consultation. And some just look at the one symptom you've come in with on the day.

I was once told by one doctor to ignore what a nurse had told me and to Google it myself if I was confused as they have access to exactly the same info as me and I should have done the research and asked for the treatment.

I was a bit stunned by that one.

After Several hospital doctors, 3 GPs, 2 school nurses, 2 NHS physiotherapists and 1 Private Physiotherapist I was at the end of my teacher with DDs various pains and injuries
As a last resort I took her to 1 final GP who had an excellent reputation and who had done all my Ante natal and baby stuff so I trusted her. Within 30 seconds of us arriving she said “ she’s obviously Hypermobile and so are you”
Luckily an urgent diagnosis wasn’t needed but having spent too much time in A&E and even being threatened with SS since I had “ obviously pulled her arm too hard” it was a real relief to know what was going on and to be able to take precautions.

It will depend on definitions but I've seen estimates that there are c100,000 human diseases and disease processes, most of which will be relatively rare. Many of which present with common symptoms. I'm not sure ten years would make someone capable of correct diagnosis first time every time or even second time in that realm. I know you're not suggesting it's easy OP but I thought I'd give some idea of the scale of the issue.

Let alone conditions that present intermittently, often with a sense of humour going absent before entering the consulting room.

And children's conditions that present differently or, even worse, in children too young to describe how they feel. Who'd be a paediatrician? Especially in Newport.

Ok my son was diagnosed at 17 with A condition that should have been spotted at birth. Dh was a result diagnosed with the same in his early 50s .
We never considered it medical negligence.

The sooner AI replaces human doctors, the better

presumedinnocence activities that require expertise, like diagnostics, are the areas AI struggles the most. We don’t know how human experts make diagnostic judgements, much less how to teach AI to do the same. AI diagnostic programmes are notoriously off the mark and suggest really weird diagnoses.

It's early days for AI though I had to smile at the deal signed with Google for early access to patient medical data. I'd be careful what we wish for. Large firms with access to the core medical data required for AIs to learn and then using your personal medical data for a diagnosis would require a, perhaps, exceptional level of trust. Still, large IT firms have been shown to be trustworthy.

I suppose my concern would be for elderly patients perhaps, who trust their doctors implicitly and possibly accept a lot of symptoms as being old age related. They might not consider reporting certain things. They can't google and come up with things themselves and really they shouldn't have to. That's my point really.
A good doctor should be a sort of version of google themselves and their brains should be able to come up with potential diagnoses. Or at the very least they should know the questions to ask if someone comes in with tummy pain for e.g. Also, by the time you get an actual appointment and they physically examine you, you might not have the pain you were calling about in the first place, so nothing might show up on physical examination.
The other side of it is that when you're not in pain for e.g., and you go to your GP appointment, you might have forgotten all about how bad the pain was and where exactly it was at the the time you first became concerned.

It just seems a bit hit and miss to me. Having fully read the responses to the thread, there are several unfortunate examples given where diagnoses were missed or not looked at.

I think we should expect better.

And don't get me started on mental health diagnoses!

"I guess it depends on whether you've drawn the doctor's attention to all of your symptoms. He/ she isn't a mind reader ."

I totally disagree with that. Lots of GPs only allow a certain number of symptoms to be discussed and appointments are time restricted. That's not the patient's fault (or the drs either necessarily).

You're asking for God, OP. Doctors can only go on symptoms & presentation they know about. They also make their time efficient by looking for the most common diagnoses first (or to rule them out). And then there is patient autonomy; patients have the right to ignore their symptoms & not be pestered about maybe meaning. Over-diagnosis & treatment are real problems that should be avoided.

Diagnosis is a long (always changing) decision tree. That's how it works. Many symptoms can belong to multiple conditions, and most symptoms don't mean anything bad or urgent.

There are dead ends in the tree that lead to unknown. Lots of medical things are unknown. Some things are only diagnosed by eliminating other conditions, too.

And yes it's harder for vulnerable people; sick people struggle to manage their conditions or describe them.

Friend's mom was dying of long illness.. having insisted the doctors never did XYZ to help her. Friend's brother got very angry about medical negligence. Then the doctors produced tonnes of documents to show they had done XYZ. The poor dying lady was confused, didn't follow medical advice she was given, didn't reply to repeat invitations for tests or treatment. Such a mess.

As far as I can see, GPs are most useful when you need a referral to A&E - but they're pretty redundant in that respect. Diagnosing on their own, they seem to be quite crap at.

There should be some sort of process to escalate things. Say you've ongoing symptoms for 6 months, it should be escalated - so your bloods/scans/other tests are reviewed by a specialist diagnostician.

I'm not looking for God. But GPs are leaving patients suffering extensively.

What GPs are meant to do when presented with symptom x, y and/or z is explicitly described in the General Practice Notebook. If they don't follow those guidelines then you have a case for negligence. You also need to be able to prove that the delayed diagnosis made a significant difference to your outcome.

I'm not thinking about any particular thing. Just GPs in general. Or maybe mine in particular. So no, I don't want to pursue a negligence case or anything similar - they have fucked up so many times, I wouldn't know where to start. I don't mind shouting at my phone when I've got off the phone with them, but other than that I've just been wondering really. I just don't think that there are appropriate standards in place for them. They're a law unto themselves it seems.

I once went to doctors, knew what was wrong, described my symptoms, saw a medical student, the dr abc student agreed it would be what I said if felt pain the other side, told them I often suffered referred pain 4 consultants appointments, one colonoscopy, one mri scan later - finally told me what it was -the thing I had told them I had 2 months later. I was v annoyed (luckily the above was covered by medical insurance rather than wasting nhs time) but didn’t think they were negligent- they hadn’t been ignoring me!

It is plainly obvious, from the initial post, that you are not actually asking for answers to your initial question OP. You’re just wanting whine about and bash doctors.

Which is fine. That’s your right. But perhaps be less disingenuous and more direct.

If I wanted to whine and bash doctors, I'd have started a thread called 'This is where you can whine and bash doctors'.

My aunt had a blood clot that was restricting her circulation for months. The doctor diagnosed Raynaud’s disease, a common complaint that presents with restricted circulation. Until the blood clot got so big it fully blocked her circulation and caused a heart attack. She nearly died but it wasn’t classed as negligence - based on her symptoms was a reasonable diagnosis. So I guess the bar for negligence is set pretty high.

you're complaining about your GP, OP.
Some people would say that complaining = whining.

Sorry to read you have had to live with difficult illness.