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

112 replies

Seeingred70 · 21/03/2025 13:14

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.

OP posts:
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Lookingforwardto2025 · 22/03/2025 17:46

Another major plus of private consultations is that you aren't restricted to one thing in 8 minutes.

OneTC · 22/03/2025 17:38

Yeah and if it hadn't been a walk in centre I might have been more inclined to listen, as it stands my own doctor won't risk it so I'm not having it from a doctor who the only thing he knows about me and my medical history is I could be allergic to penicillin.

Blemin · 22/03/2025 17:33

It is true that about 90% of people who have previously had an allergic reaction to penicillin are not still allergic when retested in a hospital setting. Many allergies are not lifelong. I was allergic to a fruit for five years and then it went away.

That's not the same as giving it a go at home, however!

OneTC · 22/03/2025 17:28

Once went to the doctors with an obvious infection requiring antibiotics, because of the infection I'd ended up going to a walk in centre locally because I couldn't drive/ride to doctors, in the nearby town I used to live in.

I told him I had an anaphylactic reaction to penicillin.

He suggested I try it anyway because some people were wrongly diagnosed as allergic to penicillin when they weren't. I said I was 100% sure. He said he was pretty sure I wasn't allergic to penicillin.

I walked out and went and got the train to my actual GP who prescribed me an antibiotic that wouldn't kill me

Rriefrw · 22/03/2025 17:17

From what I've spoken to and experienced myself going private is so much better and gets the job done.

Iheartmysmart · 22/03/2025 16:49

I’m sure my school friend who died needlessly from a brain tumour at just 16 would love to have had the opportunity to study to be a doctor or whatever she wanted to be. But that decision was taken from her by medical professionals who decided her excruciating headaches and other symptoms were just hormonal and refused any testing.

528htz · 22/03/2025 15:22

Happywife9 · 22/03/2025 14:59

Maybe OP and others should retrain as a doctor, become a GP etc? It only takes 12 years. Which in the grand scheme of life is not that long. Its relatively inexpensive as mostly funded by tax payers. I know one lady who started it in her early 50s!

it might be useful to have people with such expierences of gaslighting and negligence infiltrating the medical profession so they can use that to help others and change the system from the ground up?

So people should only be listened to if they're qualified GPs? God complex or what?!

Patients are quite often intelligent, sentient beings who are perfectly capable of identifying when they're ill and are also capable of identifying when they're being fobbed off. We're not all thick hypochondriacs.

GPs will soon be replaced by AI and I can't wait.

Words · 22/03/2025 15:19

I first saw a male locum, recently arrived in uk, who dismissed my symptoms ( rapidly increasing breathlessness and debility, swollen legs , feet and stomach) as the result of eating unhealthy foods. He poked my stomach through my clothes and glanced at my ankles.

His notes read he had concluded this as I was able to talk in complete sentences and had 'admitted to eating unhealthily' ( yes I do sometimes but I hardly exactly exist on takeaways and barely eat anything at all now due to the distended abdomen. )

He asked what I did for a living and actually rolled his eyes when I explained I was a senior manager in the public sector. Presumably because at that point I looked like a bag lady.

Insisted on seeing another gp, female, competent who ordered a battery of tests. I have heart failure, kidney issues and other stuff going on. I probably won't ever work again as things are deteriorating fast.

Consultant has discharged me back to gp with a prescription for medication that has caused more issues than it has solved - and who cannot answer my many questions as of course she is a generalist not a specialist.

Itsamummybear · 22/03/2025 15:16

I was referred to social services because they thought I had munchausens by proxy… turns out I was right. My son did have an extremely rare birth defect; 5 years later he’s having genetic testing. Completely ruined my life did, that referral- I’ve had to bite my tongue regarding concerns about my son due to the fear that they would get involved again. Furious furious furious.

Seeingred70 · 22/03/2025 15:16

@Happywife9oh dear, back to not being able to criticise except from the inside. I’d love to be able to train/retrain, seek employment, but for the last three years, I’ve been a full-time career to my daughter, battling the system for a large part of that to get someone, anyone, to recognise that what was ailing her wasn’t ‘just’ anxiety or chronic fatigue. The next few years (I hope we’ve got years, but I have no idea) will be spent supporting her throughout her cancer treatment. Perhaps, those in the system could listen to the experiences of the gas-lit and reflect on their practice and those aspects of it that are within their powers to improve. The system should be capable of change based on listening to the experiences of those it serves. It’s quite clear that there is an issue with the culture in the NHS. It would be arrogant of me, or anyone else, to assume that I would be more immune/resistant to it than the next person, should I choose to work in it.

OP posts:
Blemin · 22/03/2025 15:06

@Happywife9 you work in the NHS and I claim my five pounds.

Definitely defend your position. Don't listen to patients. They're all crazy! They're all out to get you! Lalalalalala.

Happywife9 · 22/03/2025 14:59

Maybe OP and others should retrain as a doctor, become a GP etc? It only takes 12 years. Which in the grand scheme of life is not that long. Its relatively inexpensive as mostly funded by tax payers. I know one lady who started it in her early 50s!

it might be useful to have people with such expierences of gaslighting and negligence infiltrating the medical profession so they can use that to help others and change the system from the ground up?

Blemin · 22/03/2025 14:53

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".

minnienono · 22/03/2025 14:44

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.

Blemin · 22/03/2025 14:37

@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.

Lookingforwardto2025 · 22/03/2025 14:35

Happywife9 · 22/03/2025 13:09

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?

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.

Iheartmysmart · 22/03/2025 14:27

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.

reesewithoutaspoon · 22/03/2025 14:11

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.

Feelingleftoutagain · 22/03/2025 14:05

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

Beesandhoney123 · 22/03/2025 14:02

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.

littleluncheon · 22/03/2025 13:55

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.

Seeingred70 · 22/03/2025 13:54

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.

OP posts:
Tagyoureit · 22/03/2025 13:47

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.

Blemin · 22/03/2025 13:46

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.

BarneyRonson · 22/03/2025 13:38

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.

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