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.