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.

I also know someone who had to take her baby back to the GP endlessly before being referred for a scan that showed a very rare cancer with extremely low survival rates.
Obviously I understand that the vast vast majority of children the GP sees will not have a rare cancer and an element of probability needs to be considered when looking at a patient. But the range and severity of symptoms that were repeatedly dismissed as “viral” was shocking. “It’s just viral” was essentially “can you just go away now”.

You're going to see far more people in FB groups who were denied coverage than people whose insurance companies gave the thumbs up though.

@JoyousEagle yes, in little kids everything is viral, teenagers it’s either hormones or mental health, women -ditto. Men - hmmm, they never come to the doctor so there must be something wrong: let’s run some tests!

@mathanxiety maybe, but it’s an eye opener for someone from another country. A lot of people here assume all the NHS’ problems could be solved by moving to an insurance-based system, but it seems that in some cases, at least, all that happens is that someone else assumes the role of gatekeeper.

My DD had a infected chalazion cyst that was red angry and oozing pus after a long wait to see the ophthalmologist he couldn't have been more dismissive. His follow up letter was also full of inaccuracies. Fortunately our brilliant GP agreed that is wasn't good enough and referred us to another hospital for a second opinion where they agreed she needed treatment but it was a long wait to get to that point, with my 4 year old DD in pain with not treatment for 6 months.

It wasn't life threatening but I am sure it was painful. I complained about the first ophthalmologist but I hold out no hope that it improved his attitude.

Similarly I have struggled to get treatment for a persistent uti which I was told was normal as cultures didn't grow anything even though NHS guidelines state that symptoms should be used as a diagnosis and tests are notoriously unreliable. I ended up having to pay a fortune to get private treatment.

I have absolutely not faith in the NHS. The attitude of doctors if you do your own research and question them leaves a lot to be desired.

I'm in the complete opposite situation. My gp would refer me for a paper cut! I pretty much dread a check-up because I know how many hospital appointments it might lead to. Thorough is not the word for it! I'm in Ireland if that makes a difference.

Most people that GPs see haven't got a serious illness. They have to pick out a needle in a haystack. I'm not saying some aren't rude, dismissive etc, but most GPs will see e.g. one teenager with cancer in their whole career, and hundreds of thousands of teenagers with similar presentations who haven't. I don't know what the answer is but it's easy with hindsight to say 'x y z symptoms were obviously cancer' after you know it's cancer (insert other serious condition as applicable).

My sister got offered a psychiatrist for her interstitial cystitis. She was in agony. Because it wasn’t showing on the urine tests, ‘of course’ it had to be that she was nuts.

I took my son from a few months old to the age of 4 to the GP, A and E and two consultants, telling them that he was having nocturnal seizures. I recorded them on my phone, recorded them in a diary, explained in detail what his symptoms were, etc but got told that I was ‘overly anxious as a first time mum’.

The same consultant who told me that he definitely didn’t have epilepsy, told me that he did nine months later when my child collapsed at the side of the road with a full tonic clonic seizure and I had to flag a car down to ring an ambulance. The thing is, by the time he got diagnosed and put on meds (with horrible side effects), I’d just had a baby. The timing of my eldest child’s diagnosis and the birth of my new baby contributed to dreadful postnatal depression which could have been avoided if the doctors had listened to me in the first place.

Ha ! I dont think it's on the curriculum. But it's such standard practice that new recruits adopt it as routine!

I think AI would assist with diagnosis as it can come up with results for symptoms that stretch beyond viral, anxiety, menopause, depression etc. It makes you wonder what their training actually is for if they then ignore 90% of it once qualified. Very poor value for money. They'll soon do themselves out of a job if this poor performance continues. AI algorithms could come up with a list of possible diagnoses if symptoms are described. Tests could then narrow it down and a treatment algorithm followed rather than just flinging paracetamol or antidepressants at everything. Surgeons might still be needed because they have technical skills that a robot wouldn't have, but other types of doctor could easily be phased out and replaced.

https://www.advisory.com/daily-briefing/2024/12/03/ai-diagnosis-ec

It seems doctors can't even effectively use AI to assist in diagnosis.

@nothingcomestonothing not sure anyone has said that. I certainly don’t blame my GP, the paediatrician or the paediatric rheumatologist for not ‘knowing’ it was cancer, but I do blame the paediatrician for failing to recognise that enduring debilitating fatigue + mild, slowly worsening anaemia plus ever increasing inflammatory markers + generalised pain, specific pain, loss of daily functioning + abnormal antibodies at very high titres = some sort of disease process that falls outside of her scope of practice. I do blame her for deciding, at triage, that this was chronic fatigue and refusing to budge from this position as the picture evolved; I do blame her for dismissing every single sign and symptom that didn’t fit with this narrative as ‘normal for her’ and I do blame her for point blank refusing to admit to any of this or apologise. There are NICE guidelines that help GPs pick out these needles in haystacks, which are repeatedly ignored. They also have a tendency to dismiss abnormal results as errors, one-offs, rather than considering them alongside symptoms and running further tests. What’s the point of them, if they won’t even try to find the needles? They are simple extremely expensive gatekeepers. It wasn’t until we got to the rheumatologist that instead of either gaslighting us into believing it was nothing, someone said, well, something is definitely going on here - I just have no idea what. Then the process of elimination, which lead to the incidental discovery of the cancer began. It had already spread to her lungs by then. Who knows whether that could have been prevented. Like the poster earlier on said: ‘It’s a shitshow and it’s killing people.’

I'll add gynaecologists who see women as a kind of child, to be manipulated into the stirrups without proper explanation or warning and then subjected to excruciating and unexpected surgery without anaesthetic.

And the number of them who are female just astounds me.

The medical profession is the natural habitat of intellectual arrogance.

I’ve used AI for myself,and dh over the past year and both times it’s successfully diagnosed us where the GP has failed (in dhs case several appointments over a few months with different gps). Chat gpt had him diagnosed in minutes and he went to a&e and told them and was admitted as an emergency.

id been fobbed off for 20 years. Though mine wasn’t as acute as dh.

I will always use Chat GpT prior to any medical appointment from now on.

@Cluborange666 I’m so sorry you had to go through that!

I feel as though doctors are told to ignore signs of endometriosis, because if they actually identified the 10% of women of childbearing age who had it, the resultant laparoscopic surgeries to remove it (~ let alone the repeat surgeries every five years) would bankrupt the NHS. I truly hold this belief.

In the future they'll just have higher grades of nurse who can perform diagnosis with AI. Surgeons will probably have to continue. The health service will save a lot of money and have a better success rate, increased efficiency, better patient outcomes once they go down this route. They need to start trials if they're not already. I think the average patient has to visit their GP several times before they receive an accurate diagnosis. They don't even physically examine you anymore in most cases. The avoidance of patient deterioration, sickness pay, risk of dying or losing function, infection and ongoing pain would be a major step forward, alongside receiving a timely and accurate diagnosis.

I have gynaecologist relatives who don’t really believe in Endo and think women exaggerate - so there’s no hope really. And one is a woman.

Interesting, please can you share more on how this works?

This is terrible. AI would be logical and non prejudiced too.

Yup.

I watched my mother be treated for mental illness as a child - she was actually dying of colon cancer, my dad took out a loan to go private and she was diagnosed almost immediately after 3 years of fighting her GP and eventually being told it was mental illness because she kept making appointments to see him. It was too late and she died 4 months later.

When I started work at 18, I took out my private healthcare policy. I’m 45 now and will never be without t it.

My aunty visited the gp with bladder problems, blood in her urine for 2 years, was fobbed off. She had cancer. She was a smoker and a few questions should have alerted any gp to the possibility. She died soon after eventual diagnosis.

My dn aged 16 was poorly for weeks. Struggling to stay awake, sore throat, losing weight.
Dsil took her to the gp 3 times and was told it was a stomach bug and then a kidney infection. Dn was not improving.
Dsil rang me to vent and I asked some leading questions and diagnosed glandular fever over the phone. I worked in pathology at the time.
Sure enough dn was given a blood test at dsil’s request and she did have gf.

You just open up the chat gpt website or app and type a message to it….almost as if you were making a post on here. So you tell it that you’d like it to consider some possible diagnosis from a list of symptoms. It’ll come up with some disclaimer that if you are concerned you should seek medical assistance. Then go on and tell it who you are, age and sex (don’t know if it needs this), what your symptoms are, how long you’ve had them and res anything in your last medical history or family history you want it to know.

Have attached a screenshot. Gp spent months wondering if it was a weird eczema and saying if it carried on they’d refer him to dermatology but never actually did, just kept giving him tiny tubes of steroid cream.

I’ve always had mostly positive stories about my Gp. But I’m in a similar position as you re my daughter. For months now she has been complaining of severe pains in her stomach, losing black discharge/fluids outside of her period. Like clots. One side of her groin was swollen. So after seeing a nurse she sent us for a scan that was 4 weeks ago we have the scan this coming Monday. And she’s been off school today with pains again. I’m so so worried but just don’t feel like I’m getting anywhere fast.

I think a lot of people have had dismissive experiences. I’ve actually found my experienced practice gps to be excellent but the more junior staff in paediatrics to be more of a challenge.

One example- I had a poorly baby- GP stayed open later than opening hours to see her and sent us straight to the hospital as a red flag for sepsis. The reg who was on that night missed a raging kidney infection in my baby and sent me away with patronising advice about nappy size. She was quite sheepish the next morning when I was back with a very poorly baby).

No, I'll add to your list (I've posted this on other threads as well), my mum had ongoing doctors visits for extreme bloating, breathlessness, pain severe enough to cause fainting, vomiting, prolapse, urinary difficulties - being fobbed off, it's IBS, its the menopause, it's fibroids, it's your diet, your weight, your lifestyle etc (she was an active size 14 - 16). The last diagnosis from her GP was anxiety, and she was sent away with a prescription for anti anxiety medication and the number for a telephone counselling helpline. 48 hours later she took herself to A&E, waited 17 hours, and was promptly diagnosed with advanced ovarian cancer. All the while she was berating herself for not doing her mindfulness exercises properly.