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 son was diagnosed with a stress rash which actually turned out to be scabies. Had it for months before he himself asked the dr if it could be that ? I would have thought this was basic stuff ?

Yes, they attribute a lot to stress/anxiety. That was what was wrong with my daughter for a long time, and they would have carried on with that as an explanation of I hadn’t insisted on blood tests!

I'm sorry you've had to go through this OP. I don't know about purposefully gaslighting, but I do believe many medical staffs automatic response is 'no, you are wrong' rather than examining each case individually as you'd hope from a medical professional.

I suspect it comes from a mixture of large ego, lack of time, nhs penny-pinching and general lack of respect for patients.

It infuriates me and I always push back against it. I maybe find that easier than some because as an ex staff nurse I know Dr's are just like the rest of us.

In your case I would definitely make a formal complaint and I wish you and your daughter well x

@JasmineAllen thank you. I have complained. Debating whether or not to take the complaint to the ombudsman. I kind of think the whole system is so broken that it will achieve nothing. The other part of me feels like I need to do everything in my power to try to stop this happening to someone else.

Personally, I would take it further if it's possible without too much stress. IMO the only way things change is by pushing back and hopefully the paediatrician might think twice before brushing off another parents entirely understandable concerns.

Good luck x

In the countries I have lived in, except for the UK, there are different GPs for adults and children. It makes such a difference compared with the UK when your child’s doctor is a paediatrician who only sees age 15 and under.

Yes I had a situation once where I called 111 about my 6 week old. They had a dr call me back and she was so dismissive, said it was nothing, see a GP in a few days if nothing changed etc. Then at the end of the call she happened to ask something which made me mention my older child (3 at the time). Then she said “oh you have an older child? I thought you were just a paranoid first time mother! In that case I think you should go to A&E, I’ll let them know you’re coming.”
DD ended up being admitted to a ward on IV antibiotics. But if I hadn’t had an older child, I’d have been told it was all fine just because she thought I was a “paranoid first time mum”.

I think it is a combination of:

a) the arrogance and hubris of people (particularly men) who have become experts in their field;

b) the extremely unhealthy and insular culture of paternalism and rigid hierarchy that exists in the NHS - nurses of higher bands refusing to speak to lowlier colleagues, consultants being treated like little gods who cannot be challenged, GPs behaving as though medical attention is an ill-deserved personal favour;

c) 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.

It is a shitshow, it is getting worse, and it is killing people.

I know a few people who have been told they have something minor and sent away, not listened to and had to fight for tests

My daughter’s boyfriend’s mum - it’s “just” arthritis, it’s to be expected in a woman of your age - months and months of fighting for tests and scans it’s discovered she has stage 4 bone cancer.

My boss’s sister told she had IBS - bowel cancer.

My own daughter is coeliac, but we were sent away by the GP many times having been told her symptoms were IBS and/or anxiety.

We do have paediatricians, but they’re in secondary care so the GP has to refer, which inevitably involves a wait. Then they act as the gatekeepers to the paediatric specialists, so, if you manage to get past their gaslighting, you have another wait to see them.

I also think it’s arrogance and a superiority complex. I saw a female GP repeatedly for about 4 years following DD’s birth complaining of virtually non-existent but excruciating periods. Kept being told that periods change after childbirth and sometimes they can get more painful with age and she refused to refer me to a consultant. Wrote in my medical notes that I was anxious. Eventually paid to see a private consultant who asked a lot of questions and then managed to diagnose me within a 30 minute consultation. Turns out my uterus had fused with my bladder and bowel and I needed 3 surgeries to separate them.

I do wonder if a male GP would have taken me more seriously but I doubt it.

My experience of the NHS is overwhelmingly positive, and thank you to all those reading who work in the NHS.

However, like all large organisations there are shit members of staff and processes/pressures that encourage staff to take the easiest route rather than what’s actually best for the patient. Fortunately, I am good at advocating for myself but I do have quite strong concerns for those who are not.

I guess it’s a 50/50 chance but interestingly ALL my negative experiences have been with male Doctors, one of whom lied outright when I went as far as making an official complaint (the only one I’ve ever made in my 50 years of life - I’m by far the type of person more likely to send a letter of thanks).

For all its talk of patient-centred holistic care there is still a culture of Dr knows best among certain types. I suspect overwhelmingly that these are men since the evidence-base now shows it is women who suffer poor outcomes disproportionately.

My first experience of medical gaslighting was when a classmate died from a brain tumour at just 16 years old whose excruciating headaches had been fobbed off by doctors with ‘its hormones’ for over a year. That was over 40 years ago.

Sadly things haven’t improved and recent family experiences have been a pulmonary embolism diagnosed as heartburn, a deep vein thrombosis as calf sprain and heart failure and Parkinson’s dismissed as anxiety.

I believe I’ve got a better chance of survival by staying as far away from ‘medical professionals’ as possible.

@JoyousEagle shocking! Sometimes I think being paranoid about the dismissal and gaslighting, then you hear that and you realise they’re doing it knowingly!

@Resilience by far and away the worst experience we’ve had was with a female paediatrician. Unfortunately, gender doesn’t seem to protect against internalised misogyny. She oozed contempt and had a visceral reaction to me daring to challenge her.

I’m sorry you had to go through this. I thought the brain tumour thread got pulled for being a troll, but maybe I’m misremembering?

I can’t say my experience has been anything like yours. Currently going through treatment for cancer and everyone I’ve encountered from my initial surgical teams, all the staff on the wards when I’ve had to stay over, to my oncology team to all the various CT, MRI, PET scan staff have been nothing but wonderful.

Things happen quickly. Everyone has been very kind and supportive. I get whisked right onto the ward whenever I have a flare up of something. Our hospital is not a big fancy one, and served a huge and varied catchment, some of it quite deprived, so it’s not just because it’s a posh area. I’ve just been treated so nicely, even when I can tell they are at breaking point. I feel very grateful.

I’ve incorrectly voted for YABU but should be YANBU.

When presented with video footage of my son having recurrent night seizures following a near fatal tonic clonic seizure, his paediatrician dismissed my concerns and I had to push for tests and referral to a neurologist.

Despite my son having a neonatal brain injury, a history of neonatal seizures, video footage of seizures, on different occasions, and a recent hospital admission for a serious seizure - they still wouldn’t refer to a neurologist without push back.

This was from an experienced community neurodisability paediatrician who couldn’t seemingly recognise the clinical signs of epilepsy.

Turns out he has complex epilepsy and would have likely died or experienced increased cognitive decline without intervention.

YANBU

It's what the NHS is like sadly. This is why we go private

YANBU. My lovely neighbour kept going to the doctor about a pain in her leg. She was fobbed off for several years, until eventually it was discovered that she had bone cancer. It had spread too far and was terminal. If only the doctor had listened to her in the first place, they might have found it sooner, and while still treatable.

You see a good few posts on MN urging people not to "burden" the NHS with their broken ankle, blinding headaches, severe breathing difficulties, unexplained bleeding during pregnancy - I'm exaggerating here but only slightly.

I have friends and family in the UK who have been fobbed off by doctors too, two of whom turned out to have serious conditions. They survived - in one case cancer and in the other a lengthy misdiagnosis of coeliac disease while the patient was treated for all sorts of nonsensical other 'diagnoses', including psychiatric issues, when testing would have revealed the real problem. Neither ever trusted the NHS again. They felt that they were dealing with HCPs who had the same attitude, that the NHS must not be burdened and they were the gatekeepers charged with the important role of allowing people with real problems to be given the appropriate tests.

The craziness of not doing appropriate tests first to rule out serious problems is something that still makes them bang their heads on their desks.

I read a BBC article today about failures in reading and assessing scans and x-rays, and incomprehensible refusals to refer for CT or MRI scans despite ample evidence of conditions needing further investigation. Quite a few patients died because of the failures.

The compensation amounts offered to bereaved families were derisory. I'm in the US, not exactly the poster child for efficient or accessible health care, but those issues aside, doctors here order tests and biopsies and detailed scans. It's something that is often cited here as a problem with American medicine. Insane!

Part of the reason for the attention to detail is the threat of lawsuits. Payouts for wrongful death can run to many millions $$$.

Another part of the reason is that there is no overarching scarcity mindset, allied with acceptance of the scientific rationale that testing that yields concrete evidence is the foundation on which treatment should be built.

I think that minimising and unnecessarily strict gatekeeping by GPs seems to be NHS policy. The wait to see specialists and the delay in getting tests must cause the NHS billions and people can be in severe pain or worse in the mean time.

It’s pretty archaic that patients have to rely on the GP remembering to refer someone and waiting for contact from the hospital than being able to check the referral was done in the first place.

Care was better once we got access to the specialists but the long inefficient process of getting there is frustrating.

I am grateful that my practice surgery has nurse practitioners who are easier to get an appointment with and have better social skills than the GPs at my practice.

The inefficient appointment system is also madness. Many must be getting sicker by not being able to access medical help and despite politicians making noises about this is which would be popular with voters, nothing has changed

The worst culprit:

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

@sprigatito oh my goodness, the acting like medical treatment is ‘an ill-deserved personal favour’ conveys the attitude of some of them perfectly. In our case, it was the surgeons who acted like that - refused to answer any questions that weren’t directly about the operation, in spite of having been at the latest MDT and being the only medics we were due to see until pathology had identified the nature of the tumour. They discharged her without checking her bloods, sending her home with liver enzymes ten times higher than those she’d been admitted with for upper abdominal surgery, then tried to tell me it was nothing to do with the operation and to under no circumstances bring her in when she started to produce copious amounts of bilious vomit later that day (and throughout the entire night) which lasted several days. I had to get PALS involved to establish whose responsibility she was). They were vile! The ward had a horrible macho culture. I had to remind the doctors on the ward round that they were dealing with a 16 year old girl for whom a possible cancer diagnosis was not the everyday occurrence to her that it cleared was to them.

@mathanxiety interesting what you say about the USA, because I’m on a Facebook group for my daughter’s condition (it’s a very rare cancer) and a lot of the sufferers in the UDA struggle to get the appropriate scans and tests because their insurance companies block them. The doctor orders them, the international guidelines confirm they are clinically indicated, but the insurance consent refuses to give the go ahead.

I used to see this behaviour in nursing as well. I'd report that Mr X appeared to be developing a chest infection or whatever when I did the handover after a nightshift. I'd ask for him to be seen by a GP then I'd be met with "well he was fine yesterday, I'll just give him some paracetamol to get his temperature down" 🤦🏼‍♀️ of course I'd return that night and Mr X would now be quite ill and need an ambulance to A&E during the night (invariably on a weekend). This was a regular occurrence. I think they'd do it to save themselves work. I've also noticed that NT people are more likely to display denial than ND people. I don't know if it's a feature of their neurotype, but many are very avoidant. Some people are just lazy and can't be bothered as well.