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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:
Seeingred70 · 22/03/2025 13:37

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.

OP posts:
Happywife9 · 22/03/2025 13:24

Iheartmysmart · 22/03/2025 12:39

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.

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

528htz · 22/03/2025 13:15

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?

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

528htz · 22/03/2025 13:13

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.

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?

Branleuse · 22/03/2025 12:57

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

verysmellyjelly · 22/03/2025 12:43

Fairyliz · 22/03/2025 12:34

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.

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.

Iheartmysmart · 22/03/2025 12:39

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.

Fairyliz · 22/03/2025 12:34

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.

Birdwordie · 22/03/2025 12:30

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

SassK · 22/03/2025 12:25

AmusedGoose · 21/03/2025 17:54

What a strange reply.

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).

butterfly0404 · 22/03/2025 12:25

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.

LadyJaneEarlGreyTea · 22/03/2025 12:21

madaffodil · 21/03/2025 15:27

The worst culprit:

"It's nothing to worry about - aches and pains are to be expected at your age"

Not quite the same but recently I had an GP telephone appointment with a pharmacist re HRT.
I am on the lowest dose and I asked for my dose to be increased, I listed my reasons, certain health markers are declining, which I researched and found they are all recognised as being affected by low oestrogen.
I have stomach fat, an area which never used to carry fat and which will not shift no matter what I try and I am trying hard, again a low oestrogen issue.
The pharmacist told me that unless my night sweats and hot flushes were getting worse she wouldn’t raise my prescription due to the risk of breast cancer (no family history, no elevated risk).
I have never had sweats or flushes but that seems to be the only symptom she recognised, none of the other known symptoms I listed to her counted.

The kicker - she told me that everybody puts weight on when they get older.

I wish I’d asked why the BMI chart doesn’t change once you are over 45 in that case.

edit- when I mentioned fatigue, again a well known menopause symptom she told me to make an appointment with a GP.

Cadenza12 · 22/03/2025 12:19

My husband failed to recover following a heart attack and subsequent stents. I phoned for an ambulance 5 times, kept being told his heart was fine. I could see he was dying. Eventually a foreign locum who was working below his pay Grade happend to be passing while we were in a and e and asked about the history. He instantly recognised pericarditis which is often fatal. He didn't give up until someone took it seriously and a large amount of fluid was drained. DH owes his life to that guy.

Seeingred70 · 22/03/2025 12:18

@HoppingPavlova So all clinical staff are above criticism because the system puts pressure on them to serve it and not the people it exists to serve? All mistakes borne out of arrogance, incompetence, prejudice (in my daughter’s case the paediatrician couldn’t look beyond her autism and previous case of depression) sometimes, even laziness are the fault of our politicians? That attitude does a massive disservice to those clinical staff who behave honestly and with integrity despite the pressure to do otherwise and this argument is a massive part of the problem.

OP posts:
Blemin · 22/03/2025 12:15

Yes, I've only once in my life been treated with respect by doctors, and that was in intensive care. I almost never went to the doctor - once every 3-4 years - and basically every time I was treated as a time wasting hypochondriac, whatever the issue. I honestly found it so weird - what a strange conclusion to draw! I think there's something really odd going on with the NHS.

So I haven't gone at all now since 2019. I order my own tests and pay for treatment out of pocket in the rare cases I need such things - a UTI or a B12 issue or something. I'll go to the doctors when I'm dying, and that's it.

I don't need some random man implying I'm an hysterical fantasist wasting taxpayers money - that's not a thing I need to schedule into my day. 😂

Phase2 · 22/03/2025 12:08

Yes 100%. My adult child is forever short because the second opinion refused to accept or repeat his original test, suggesting it it was only one result (no, it was the long one over a day); it wasn’t a fasting one (it was) and relied on ‘ I trust Mr X implicitly’. Also my mum had to pay privately to get a diagnosis which led to half her children and grandchildren then being diagnosed after being fobbed off by the GP. It’s endemic.

Lookingforwardto2025 · 22/03/2025 12:07

Much much less serious than some of the misdiagnoses posted here but I presented at my GP reporting having swallowed a fish bone and my throat being in horrible pain. The GP told me it was viral and sent me home with some stronger painkillers. Three days later a locum heard my symptoms and immediately rang ENT and it was out of my throat shortly after. Utterly ridiculous. I am taking out private health insurance next month. Quite a bit will be excluded as I do have several pre existing conditions but at least going forward I can have anything new seen to quickly by people who aren't just thinking about the cheapest way to do stuff.

Seeingred70 · 22/03/2025 12:02

@Bogginsthe3rdapologies - I thought you were suggesting I was paranoid!

OP posts:
HoppingPavlova · 22/03/2025 12:01

chronic underfunding and underresourcing, which leads to doctors at all levels twisting themselves into pretzels to insist that the patient’s condition is due to something that doesn’t cost money to fix - even when they know damn well that it isn’t the case, they can at least delay committing to expensive treatment, or better still, avoid being the one responsible for it

Bingo. That’s responsible for the majority. Unless you are responsible for a clinical budget or ploughing through waiting lists, you can’t comprehend the pressure.

So, the first line of defence is limited tests. If you actually sent every patient for an MRI, who realistically should have one to diagnose/rule in or out, you would be put out on your ear within 5 seconds. Similarly, the only way to even hope to get within a stratosphere of acceptable metrics for waiting lists (esp surgical) is not to put people on them.

OP has a valid point, however is pointing the finger at the wrong people. Don’t have a go at clinical staff who, as the above poster put it, literally have to tie themselves in knots to ‘make’ a condition fit something that will not cost $$ or blow out metrics further by diagnosing or treating. The finger needs to be pointed at the political level who hold responsibility for funding.

Seeingred70 · 22/03/2025 12:00

@verysmellyjelly thank you. I don’t think the response from @Bogginsthe3rd is worthy of a response, but I appreciate the support. @2JFDIYOLO I agree - I don’t think the role of GP can last much longer: there is far, far too much to know now. I suppose medicine is a victim of its own success, but, I agree, AI will definitely have a role. I did a lot of research to direct my GP to do various tests, which meant when I finally got to the paediatrician, I had enough evidence to argue that there was a disease process at work. Had I not done that, my daughter would probably already be dead by now, because the paediatrician was determined that this was chronic fatigue/mental health/autistic burnout with a bit of constipation.

OP posts:
Happywife9 · 22/03/2025 11:54

This is a sobering read and I am so sorry to everyone to have had such poor expierences with their GPs

Bogginsthe3rd · 22/03/2025 11:48

verysmellyjelly · 22/03/2025 11:47

Okay, thanks for clarifying, I apologise!

Sorry quote button failed my side.

verysmellyjelly · 22/03/2025 11:47

Bogginsthe3rd · 22/03/2025 11:47

No to PP above

Okay, thanks for clarifying, I apologise!

Bogginsthe3rd · 22/03/2025 11:47

verysmellyjelly · 22/03/2025 11:42

Are you talking to the OP? Her daughter has incurable cancer. I don’t think “hysteria and paranoia” is at all appropriate here.

No to PP above