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.

@notanormalday fingers crossed you get answers after Monday. Ask them at the scan how long the report will take, and to whom it goes so you can start asking for the results - my experience is that otherwise the report tends to stay in an inbox somewhere for an unnecessary length of time.

@Springisintheairohyeah I’m so sorry. And they are classic symptoms of it that a GP just shouldn’t miss!

@Seeingred70 sorry this is off-topic a little but where was the thread about the boy whose symptoms transpired to be a brain tumour? Would you be able to link to it by any chance? My husband has a similar sounding experience in his early twenties. Thank you

To be honest I haven’t found private any bettter. I’ve paid £hundreds to be gaslit and fobbed off privately as well. Though the ones I’ve seen are private and NHS so maybe they just can’t help themselves. Perhaps a fully private doctor would be better. 🤷‍♀️

Just been reading about Katherine Ryan who has been diagnosed with skin cancer for the second time and her private doctor tried to convince her that the mole wasn’t cancerous but she insisted on having it shaved and checked. She says thank God she did!

I find GPs to be the worst. Possibly because they have a little knowledge of many things. I also think they have a bad habit of patronising mothers with unwell children.

I don’t know how to sort, but it was by YourRubyMaker; title was ‘Going out of my mind with worry’ I think

A few years ago my husband had some odd symptoms that his gp decided were migraines, even though the symptoms didn’t fit. I wrote all the symptoms into google, it came back with a rare condition that the gp almost laughed off.
H was so ill he couldn’t work, couldn’t drive, felt dizzy when walking. He went to the gp repeatedly, had his eyes tested, no good.
Eventually he happened to see a locum who had been a neurologist, sent him straight to hospital to see his ex colleagues - it was the very rare condition that I’d googled on day 1. Sadly they caught it late and H had a stroke (recovered fully after a few months). Google and AI could be a very useful tool in more timely diagnosing, rather than solely relying on drs who often get it wrong!

6 years after that H went to the gp (different practice) because of burning sensations in his chest and down his left arm. The GP didn’t take blood pressure, didn’t send him for an ecg or anything, just said it was stress. 7 days after that appointment he had a sudden cardiac arrest whilst doing parkrun. Again he fully recovered!

These are just the dramatic events in my family, there are loads more that are annoying but not life threatening.

So many are fobbed off with awful results. A young mum in my area told she had IBS, eventually found she had bowel cancer and died a few weeks later. A mother told her child had a cold, died 24 hours later of sepsis. It’s so worrying.

(Have namechanged as that’s quite outing!)

We all know our own bodies. If something is wrong, and you want your GP/first line medic to refer you for investigation, it is sometimes necessary to say you have 6 out of 6 red flag symptoms (even if you only have 3 or 4 out of 6).

What a strange reply.

I think in future I'd trust an experienced nurse-led diagnosis using AI more than a GP.

There is just so much more to know now, in terms of new knowledge around disease, new drugs, side effects, contra indications etc that how CAN one GP possibly store it all in their heads?

Edit: I've just tested Chat GPT for something I have had:

"Please assess this issue and give a diagnosis: I am female, aged 62, past menopause. My right shoulder is excruciatingly painful. The pain is there all the time but is awful if I jog my shoulder. My range of movement is very limited. I sometimes feel tingling in my arm and hand. What is my condition and how should it be treated?

ChatGPT said:
Your symptoms suggest a shoulder pathology, and the most likely possibilities include:
Rotator Cuff Tear – Common in older adults, often causing severe pain, limited movement, and weakness. Pain worsens with movement or pressure.
Frozen Shoulder (Adhesive Capsulitis) – Stiffness and pain develop over time, making movement increasingly difficult. This condition is more common in postmenopausal women.
Shoulder Osteoarthritis – Gradual degeneration of the joint, leading to pain, stiffness, and limited motion.
Cervical Radiculopathy (Pinched Nerve in Neck) – Tingling in the arm and hand suggests possible nerve compression, which could be linked to spinal issues.
Calcific Tendinitis – Calcium deposits in the shoulder tendons can cause sudden, severe pain and limited motion.
Next Steps:
Medical Evaluation: See a doctor (orthopedic specialist or rheumatologist) for an assessment.
Imaging: X-ray, ultrasound, or MRI may be needed to confirm the diagnosis.
Treatment Options:
Pain Relief: Anti-inflammatories (ibuprofen, naproxen) or prescribed pain relievers.
Physical Therapy: Strengthening and stretching exercises may help regain movement.
Cortisone Injection: If inflammation is severe, a steroid injection might provide relief.
Surgery (if severe): If a rotator cuff tear or another structural issue is found, surgical repair might be necessary.
Since your pain is constant, severe, and affecting movement, it’s important to seek medical attention soon. In the meantime, rest your shoulder, use ice/heat therapy, and avoid painful activities.
Would you like advice on specific exercises or pain relief strategies while waiting for medical care?"

It was indeed frozen shoulder, I had anti inflammatories & physiotherapy.

I think we're at the beginning of a massive shift in the way initial consultations work.

It sounds like you have a degree of hysteria and paranoia maybe?

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

Okay, thanks for clarifying, I apologise!

Sorry quote button failed my side.

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

@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.

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.

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

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.

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.

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. 😂

@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.

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.

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.