To wonder whether gaslighting is part of the UK medical curriculum?

[Seeingred70]

Slightly inflammatory title, but the recent thread by the poor mum who had to fight to get her concerns about her son (who turned out to have a brain tumour) heard and actioned, so mirrored my own experience of getting my daughter’s (now stage 4) cancer diagnosed, and those of friends and acquaintances who’re battling or have battled to get their concerns about their/their child’s health taken seriously, that I can’t help wondering whether doctors are actually trained not just to assume most patients are ‘worried-well’, but to actively come up with benign explanations for clinical signs and symptoms of disease that will reassure patients and negate the need to treat them, until they are so ill that it is a medical emergency.

My story: in brief:

My daughter was completely and utterly exhausted with elevated inflammatory markers, that went from 4 x the upper normal limit, then 8, then 11. The paediatrician (after a four month wait during which 4 attempts to expedite the appointment failed): ‘that’s probably just her normal - my inflammatory markers are often in the 30s’. By this point, she had lost almost all daily functioning. She had anaemia, and pretty much every symptom of systemic inflammation there is, plus rare antibodies associated with several serious conditions in her blood and other biochemical signs of disease. The paediatrician insisted it was chronic fatigue. It took a very robust challenge from me (two letters and an argument in clinic) to get referred to a specialist , who ultimately ordered a ct angiogram, which ultimately lead to a diagnosis of cancer.

I’ve recently been experiencing severe palpitations, and had two abnormal ECGs in A & E. Family history of dilated cardiomyopathy. Cardiologist: they probably just positioned the leads incorrectly. I have challenged this and am booked in for an echo. But why assume incorrrect positioning when the results reflected the symptoms?

Step-daughter had a 5 cm mass detected at her anomaly scan. Referred to gynaecology: growing uterus obscured the ovaries so rescheduled for 12 weeks post-partum. Ovaries were clear - gynaecologist: must have been an ovarian cyst that burst. Me: hmm, can the ovaries even be visualised at the 20 week abdominal ultrasound? (Quick google and the answer is, more often than not, no, not both of them). Is it possible that what the midwife sonography saw was higher up? More fights; scan performed; abdominal tumour of the same variety as my daughter’s is discovered; 7.5 cm ((turns out husband has a dodgy mutation).

Other anecdotes: a friend whose daughter’s recurrent migraines were attributed to eating too much fatty food by a paediatrician who didn’t even ask about her diet (which, incidentally, contains very little fatty food). A friend whose son’s pronounced limp - which a private podiatrist put down to a protective gait due to the pain he is experiencing (and refused to take payment because he couldn’t help - said he needed an MRI to locate the source of the pain) was attributed to psychosomatic pain due to poor mental health, with the accompanying burst blood vessels around his ankles being attributed to friction from his socks. A friend whose son was hospitalised with an asthma attack on the day she had seen the GP with concerns he was asthmatic and was told he ‘just had a cold’.

So, what do you think? Am I just one very unlucky ‘service user’ with some very unlucky friends, or is there something wrong here? It has to be said, once diagnosed, the doctors are great, at least in so far as all the gaslighting stops and they start listening to you, rather than dismissing you, but I feel like it is unnecessarily difficult to get to that point, and I dread to think what happens to those who assume the doctor always knows best.

My DH presented at multiple GP appointments with clinical signs needing investigation- was told multiple times it was hemorrhoids and to stop bothering the busy Doctors.

10 years on a pro active nurse practitioner ordered blood tests resulting in an emergency iron infusion and a colonoscopy. He had stage 3 colon cancer requiring emergency surgery, months of pre and past op chemo that has left him permanently disabled with a billion to one side effect.

What reply did you mean? Honestly, the quote button isn't that difficult to find... 🙄

If you meant my reply about over egging symptoms that are concerning (symptoms of cancer, for example), it could be the difference between a 2 week referral and a 6 month referral. For clarity, I'm not suggesting entirely inventing symptoms (obviously).

I think you may be right. My son last year suffered from a particular eye infection and the only place that could treat him was the eye hospital. First time he had it (last year) all was well, they gave him a specific treatment it cleared up. Christmas time it started again, I booked in with the optician who agreed it was the same problem and referred him for an emergency appointment at the hospital which we waited 2 months nearly. At this point my son was rubbing his eyes all day everyday for that length of time amongst other issues and when I sae the consultant he told me he has eczema on his eye lid. I was furious, I challenged him and he sniped back at me and told me if I paid attention to my child I may notice he has eczema elsewhere!? I was mortified. So I went back to the GP same week got re referred again back to the hospital, thankfully saw someone else and lonely behold he had the same problem with his eyes he had a year previously. So my son had to suffer with awful symptoms for nearly 3 months by the time he received treatment. And why!? It could've been dealt with then and there. The system is broken and private healthcare is nothing but a mere dream in terms of affordability so where does that leave us as a society. I'm sorry about your daughter OP I hope she's recovering well

Yes you are totally right op and it’s not a recent thing, I first experienced it 53 years ago.
What also concerns me is that all medical people seem to operate in isolation and not actually look at your medical notes. I’ve been given medication that shouldn’t be taken with my current medication; but GP seems totally unaware of the fact that I was in anything.

I often wonder if medical professionals have any idea that there’s a huge cohort of patients who have absolutely no trust in them whatsoever. You would like to think it would make them up their game but sadly so many exist in their little god complex bubble that they probably don’t care.

Yes, in reality it’s terrifying how little cross checking they seem to do. I do all this for myself with help from my spouse, but it scares me for those who are not necessarily up to the (large) task, especially if chronically unwell, or who don’t have significant help. There must be so much avoidable harm being done.

i think so.
Ive recently stopped working in the care industry. Some peoples stories about symptoms being dismissed with disasterous consequences have made me so scared of the state of the nhs in general, but particularly about being fobbed off and dismissed

everyone saying to ‘go private’ thinking its the land of milk and honey realises its the same NHS trained doctors using the same CKS/NICE/NHS guidelines don’t they?

My first dh went to the doctors with worrying neurological signs. I went with him because I was concerned dh would play them down. The doctor examined him and said he had a virus. I calmly queried about the neuro signs (I was a qualified nurse) and he took great delight in putting me in my place. Dh had been to that surgery several times over the preceeding weeks about increasingly bad pain in his neck and shoulder. Wasn't properly diagnosed or investigated of course.

24 hours later, I had to call back because dh was losing the function in his legs. The same doctor came to the house and panicked because he knew something was seriously wrong. His attitude towards me completely changed. Dh was sent to hospital and the next day to another hospital where an MRI revealed a tumour compressing his spinal cord in his lower neck. He had decompression surgery, but sadly died a year later as it was cancerous.

Yes, they're equally as thick and lazy. Patients are just seen faster and the waiting room won't be filled with people.

I think they know thats why they leave the country or practicing altogether

Except the doctors in the NHS routinely ignore NICE guidelines. My daughter’s cancer would have been picked up much more quickly if the first doctor we saw had followed NICE guidelines on treating anaemia. We lost months - and at that stage, I hadn’t realised that I needed to check everything they did (or, more accurately, didn’t do, against guidelines.

I saw a spotty young GP last week who just wouldn’t listen to what I was saying. She seemed programmed to assume I was delusional and neurotic. Absolutely hopeless. She was like politician on question time, just repeating her script, unable to respond normally.

I don't think doctors are thick and lazy. That's not really fair or true. I do think there's a problem generally in "caring professions" where their "normal" is so different to the ordinary member of the public they end up projecting their experience on to unsuspecting strangers. They find it very difficult to engage with each person on their own terms, and bring over frustrations and assumptions from their day into your ten minute interaction with them.

A very small number of people take up a huge amount of time - these frequent flyers are a combination of the very very ill and the very troubled. Then the bulk of the rest of appointments are made by people whose symptoms will resolve by themselves. And then every now and again, there's a child with cancer. So the daily experience of the HCP is flip flopping between known people with extremely high needs and a mixed bag of people with comparatively low need. And we just merge into a blob of crazy for them.

Even though most people in the world are not "frequent flyers", most people they SEE are. It's a selection bias problem. I can understand it even if I'm personally harmed by it.

I agree.

My ds had cerebral fits when he was younger and had to be rushed in to hospital. Once, I had the distinction impression that the doctors and nurses thought I was just being a hypochondriac with perfect first baby syndrome thrown in!! They kept telling me that he was fine to take home and I said he wasn't, they all got a bit rude and huffy and then my son had another fit in front of them and we stayed for another 48 hours on the ward. DS grew out of these, thankfully, and it was nowhere near as serious as your situation but I do find it shameful that doctors and nurses don't listen to us when we know ourselves and our children better than anyone.

I'm so sorry you're going through this.

I think you’re right, @Blemin and with almost all of them, I find that, with a bit of perseverance/persistence, you can get them to listen and to realise that you’re not some unhinged hypochondriac (or a mum with FII disorder, or whatever it’s called). There is a hard core though, who just dig in and entrench their position, and I suspect these are the ones who are slightly less intelligent/more arrogant (the two often go together, let’s face it) and they really are dangerous.

I think it's a cultural stance within the NHS (related to money/resources) to "do the minimum necessary".
Order the least tests, the least invasive treatment, make the fewest referrals you can get away with.
In order to reconcile the wish to do a good job for your patients with the pressure of needing to use the least resources possible, you need to convince yourself that most patients you see are fine and don't really need anything.

Very much so. It's not a new thing though.
As a first time mum I was told I needed to put more body lotion on for constant extreme itching. Midwife said years of experience meant she knew and I didn't.

Turned out my liver was dangerously close to failing. Nearly fucking died.
.
A lump on my leg was fobbed off by a bored female pharmacist ' it's an ingrowing hair' leave it and will go away on it's own.

lump grew, it's skin cancer. Massive panic to get lump removed and hope delay doesn't mean its spread.

Xray due to falling - can't walk. No, nothing there it's a sprain. Bye.
Two days later at a&e.
Oh no no it's not. You've got a broken ankle. Goodness me, how did they miss that!

Best thing is to go with some idea of what's wrong. And how it can be fixed, and follow up. That's if you can get an appointment of course.

I do believe quite a lot of gaslighting happens, I went to A and E with chest pains, had heart monitor so knew it wasn't heart attack, nurse said I bet its gallstones, saw a Dr who said infected gallbladder, he used a ultrasound to diagnose. He prescribed me penicillin, I explained that I was allergic, explained I get a rash, makes me sick but he insisted that it would be OK and that this was a new type of penicillin, I had been awake over 24 hrs at this point, my son kept saying she's allergic but Dr insisted I would be OK- so after having allergic reaction went back to A and E saw a other Dr who did say what the actual fuck! I was then hooked up to drips with 4 or 5 inputs going into my arm, had another 30 odd hours stay in A and E then moved up to a ward, spoke to a nurse and told her what had happened, she said that Dr is always doing that he doesn't believe people are allergic to penicillin! Made a complaint heard nothing

There's a saying you often hear in medical training and healthcare.

" When you hear hoofbeats, think horses, not zebras.

Basically it encourages drs to consider the common before the exotic.
99% of the time it's ok. That cough for 2 weeks is most likely a post viral cough and will resolve in 99% of people. The problem is if they send everyone away then the 1% who has lung cancer gets delayed diagnosis.
It relies on patients returning or pushing if things don't get better, and a lot of people aren't able to do that.

I’m not sure about that, some are just so bloody arrogant that they can’t see past their own prejudice. My mum went to her GP repeatedly over the course of 4 years with absolutely classic Parkinson’s symptoms. Fobbed off time and time again with stress and anxiety because all the GP saw was a woman in her 70’s caring for my dad who had a terminal illness.

Mum went away for a couple of days not long after my dad died, and she had a fall. Got checked over in A&E and had some stitches in her head. She had a follow up appointment at her surgery and saw a locum. He was immediately concerned and referred mum for more tests. Yes she has Parkinson’s, now quite advanced thanks to her idiot GP who wouldn’t listen to her all those years ago.

I absolutely despise the GP, he’s taken away so much from my mum. She could have started treatment much sooner and we would have had her in our lives much longer if he hadn’t been so up his own arse.

The difference in my opinion is that when I have seen doctors privately and request tests they agree to do them, I don't have to book multiple appointments and fight for a referral.

@Seeingred70 yeah I do think things could be improved with some small changes:

1. doctors could think of themselves as collaborating with you on the project of your good health, which is ultimately your project but to which they can bring their welcome and important expertise
2. doctors could share with you the following: the most likely explanation is X, but this is based on probability, not diagnostic test. Please come back and see me in Y weeks if you are still feeling like this, because then we will take steps Z and A.
3. people generally could spend some time looking into the risks of overtreatment, so they don't assume that interventions are always preferable (see the recent breast cancer screening study)

None of this addresses the problem of nasty people, of course! But I do think it's not generally about people being nasty, there's something gone wrong in the mindset of NHS HCP. Having had treatment in other countries, they have their own pathologies, but this "treating everyone like a malingerer" thing is particular to this country, IME.

There is though many people who are demanding tests and there is nothing wrong, you only here are hearing from the small minority where the dr was mistaken. A gp may see 2 dozen or more people in a day, a good proportion will either have known chronic disease or have symptoms that are minor injuries, caused by minor virus or at least self limiting and none of these require secondary referral. Occasionally someone will present with symptoms that look like these but have a serious underlying cause which is why the advice is to return to the gp if symptoms persist. This seems a good balance to me. My friends son was diagnosed with leukaemia within 3 weeks of his parents raising the first concern and the dr first said come back in a week if not better, then ordered bloods then went to the hospital for further bloods and a scan, they thought this was perfectly fine.

The advice to return is not actually given, though? Perhaps it should be, but it often is not, or not in a genuine way that isn't completely dismissive. What doctors generally say is instead of "I can't find what is wrong" they say "There's nothing wrong". This is the main issue.

Just because a doctor cannot diagnose the problem, there's simply no reason to think or say that the problem doesn't exist. This is actually a deeply weird conclusion to come to - that most people spend their lives fabricating symptoms - instead of that our understanding of the human body is limited and partial.

We simply don't have explanations for many things. It's not ok to write everything down to "anxiety". What next, pixies did it? It's ok to say "I do not know".