Wednesday 1 October 2014

Don't Worry Your Pretty Little Head

OK, this really has to stop.

I've written countless articles about the failure of doctors to listen to their patients. Whether that failure comes from judgement (they're "just" an addict, they're "just" depressed, they're "just" malingering) or from arrogance (I know best, what would they know, I have the medical degree) I honestly believe it is the single most dangerous factor in our healthcare system.

But the frequency of it astonishes me. I mean, it would be understandable if the odd doctor, leaning on his extensive medical training, concluded that he really did know more than the patient, but for it to be seemingly a matter of course is totally unacceptable. It's so common, I'm not actually sure many doctors ever simply accept what their patients are telling them at face value.

Where did this assumption spring from? What led such a vast number of doctors to conclude that, on the whole, patients are hypochondriacs, malingerers, stupid or deluded? It seems totally unfathomable. Are we really all so frustrating and misguided? Does experience really lead so many to conclude that listening to what their patients are telling them will only waste their time? And when so very many times under the current model this DOES lead to errors - errors that could have been avoided by listening - what on earth is stopping them from learning the lesson?

This in-patient stay, I've got to know quite a few patients. I've been here 4 weeks and I love listening to people's stories, so inevitably, I've heard quite a few by now. I was so concerned by how many people were telling me they knew what was wrong with them all along, but their doctor or surgeon thought they knew better, that I started actually asking people if they believed being ignored had worsened their situations or even brought them here.

Almost unanimously, every single one said it had happened to them.

The girl who had been vomiting constantly for 9 MONTHS since her bariatric surgery, totally convinced that something had gone wrong with her surgery, but assured that couldn't be the case. Her doctors and surgeons assured her she had simply developed a psychiatric aversion to food due to her terror of regaining weight. They were so convinced, they had only checked her stomach but had done no other investigations whatsoever on other parts of her bowel. When they finally humoured her and had a look inside, her stomach was so twisted, they described it as a "corkscrew". She had two narrowings in her oesophagus, which also "showed signs of erosion" The new Dr she fled to said he was "surprised she'd been left in that state for so long."

The woman who assured them for months her recent surgery had gone wrong only to be told for 5 MONTHS that it was simply the healing process. When they finally opened her up, they had left 12 metal clips inside her. A simple x-ray would have confirmed it, but again, her Drs were so convinced they knew best, even that wasn't ordered.

The young girl with Crohn's who told them her stoma needed resiting due to fistulas. They ignored her and did a different operation, only for her to be back here now needing - you guessed it - her stoma resiting due to fistulas. 2 operations where she only needed one, 30 or so bed nights more than necessary.

The friend in my bay who repeatedly told Drs her endometriosis was bad but couldn't even get a promised appointment. Now, her bladder, kidney and bowels are seriously damaged, leaving her with no fewer than THREE various stomas. She will have no fewer than THREE avoidable operations since because not one, but various doctors didn't listen.

I'll go on : The old lady complaining that her "back hurt" told for 3 weeks it was just a symptom of her infection. Until they found the serious spine fracture she'd been tolerating so stoically for so long.

The woman with a cyst, complaining of severe pain, told over and over it was fine for more than a year. I'm unclear of the exact details with this lady as her story of being disbelieved is so complicated, appearing to go back over 20 years, that even I struggle to follow it. The latest saga saw her told "cysts aren't that painful" for over a year, despite the pain etched on every inch of her face. Until they found it was nearly 10cms, causing damage to her kidney and wrapped around her bowel. If she hadn't fought so very hard, she'd have lost the kidney completely. She's exhausted.

And of course me, told for the last 2 years I couldn't possibly have blockages in my bowel because my "MRI was clear." Me telling them over and over that MRIs had never been very reliable with me, them refusing to simply confirm it from my old notes. They could have settled the difference of opinion with one phone call to my old consultant. The good old fashioned "conversation" method. Now it seems that part of my bowel is in such a mess it needs to be removed completely.


Not only is this failure to listen clearly extremely dangerous, but it costs the NHS vast sums of money. Patients get sicker than they should and are left to get to the point where remedial action is more serious, more costly and more intrusive. Patients spend much longer in a hospital bed than they would have if the problem had been identified and treated from the start.

This waste of bed nights is so farcical you'd never believe it. I had been here 23 DAYS before I got the nutrition I told them I needed from the start and in that time I'd had nothing more than 2 investigations that I could have had as an out patient. But admission is the only way to guarantee I'd get them before I die of old age. As for getting urgent surgery as an out-patient, that's right up there in rarity with sparkly unicorns and toothsome hens.

The only other reason I'm here is for adequate pain relief, which I could also do myself at home, but because doctors don't believe high level, acute opiate use can ever be anything but deviance, it must be overseen 24 hourly by professionals. The only way to guarantee that the pain is controlled once it reaches a certain point, is to stay in hospital. The exhausting misery of not-being-believed as you run the gauntlet of large repeat opiate prescriptions is just too traumatic. There are just so many stages of people not to believe you. Receptionists, pharmacists, Drs, locums, out of hours doctors....I promise you, several thousand chronically ill people are reading this and screaming "THIS!! SO THIS!!"

A GP who refuses to listen to the mother who repeatedly insists her child "just isn't himself" may have to see that same patient over and over and over again, wasting countless appointments until the child either reaches some kind of crisis point or is finally correctly diagnosed. After all that, so often, just one appointment would have done. If the delay means the child will then need ongoing treatment that may have been avoided, yet more or the doctor's time and the taxpayer's money is wasted.

Not only is it costly and dangerous, but it isn't even logical. Concluding so often that parent's have the  strikingly rare Munchausen-by-Proxy just isn't at all likely. Concluding that a patient who has barely crossed his doorstep in a decade is just a hypochondriac is counter-intuitive. Concluding that a patient with a pre-existing, long diagnosed condition can never be suffering from anything else makes no sense.

Even if all you care about in life is money, then this enormous, incomprehensible waste must at least be enough to convince you this can't go on.

My many, many, years of healthcare experience - not just here but in other European countries - has led me to believe that the UK uniquely, has an extremely bizarre approach to patient care. Other countries trust you to keep your own notes, send patient's for immediate investigations when they complain credibly of new symptoms and treat conditions as swiftly and as accurately as they can. Why don't we? Why is there still this paternalistic barrier to care here? This assumption that doctor always knows best and patients will always set out to mislead or "worry themselves over nothing"? It just makes no sense. Why do so many of our healthcare professionals seem to act as gatekeepers to care, rather than gateways?

If I were Prime Minister, I would order an immediate trial, effective immediately. I would insist that for one month, every doctor, surgeon and consultant in the country took their patients at face value. I'm almost certain the results would be astonishing and the reduction in burdens on the NHS would be significant.

Perhaps most importantly of all, we would avoid untold mental distress and even damage if we stopped treating patients as people who must be patronised, fobbed off and ignored.


  1. Agree 1000% having also been on the receiving end of the patronising, sarcastic, horrendous judgements they make about people, the worst time being laid into before a panel review during which the consultant blamed me for my illnessess despite the drugs he had prescribed me causing extreme Parkinsonian side effects...I had a social worker with me at that time and she said she could not believe what she was hearing, he was so viscious to me. Just one example of many...

  2. I had written a lot but - Page closed and all gone now

    Basically they act like Gods and then ask us to sign consent form that is NOT informed consent cos they tel you nothing and inform you of nothing

    *Upset now cos lost a whole plethora of what I was trying to say*

    They dont want you to be informed as you would never agree to the stuff they want to do to you.

    They said Gallstones was constipation!!! WHY do I have to read everything to diagnose myself - Why do I have to practically become a doctor because thatis the ONLY way I will ever truly KNOW what is truth and what is them practicing their new 'idea' on me or my family?

    *Sigh at lost paragraphs of what I had leared*

  3. My mother in law was taken in while in France. After thorough investigation she was told it was Crohn's disease. Back in the UK, when she finally got to see a consultant, he said the French doctor was wrong. In fact he seemed more interested in proving the doctor wrong than providing care for my mother in law. A whole year later, yes she has Crohn's. So it's not just patients that are disbelieved in the UK, it's doctors from other countries. She was sent back from France with notes and test results, which were all ignored. She was told it was irritable bowel syndrome, then diverticulitis and had so many appointments and suffering. All avoidable.

  4. Get an Advocate. It's a handy witness should a Doctor get stupid. There is an online crowd called PohWer:

    There might also be a Mental Health cross-over. Pain often leads to Depression if it goes on for too long. So your local Mind or Rethink might know someone.

    I lost my legs after 6 years of being left in distress by arrogant Doctors ignoring their patient, and was able to turn this on the Trust in question. That Trust now embraces Advocates, as it is ( rightfully ) terrified of being sued.

    Just watch out for Legal Aid. Now it's been withdrawn it is MUCH harder for you to get Compensation to help rebuild after a medical cock-up. I lost ~£120k ( the compo for my legs being wrecked ) due to this cut.

    Take care Suey! :)

  5. As you point out, this all sounds painfully familiar. I bet you've heard the same story from Kaliya about how long it takes to get a proper diagnosis & treatment if you have Ehlers-Danlos syndrome, right? In my case, it took 15 YEARS & moving house (& entire district) TWICE.

    It took another 4 years on top of that (until I was 26) to find a dentist willing to treat me properly, without using lidocaine, which is useless on me (almost every dentist I've ever seen!) or not bothering to anæsthetise me for treatment at all (Yeovil). Had I not learned to self-advocate I might have been dead by now from all my many complications.

    Everyone with EDS has to learn to be their own doctor, essentially. There are so few supposedly qualified doctors who know enough about the condition and the multi-systemic nature of it to manage it; even some who are experts on the joint aspects don't know much about the gut, reproductive, neurological & psychological parts of it. And there are plenty. Too many doctors write EDS/HMS off as "hypermobility + pain", if they're even willing to acknowledge the chronic pain that comes with it. I've learned to avoid doctors who think like that, and to always carry a textbook about EDS written by a qualified medical professional to all of my medical appointments with new or unfamiliar staff.

    That ties into the paternalistic - and frankly sexist - nature of the system again. They won't listen to ME about my body - I can't possibly know if anything's wrong or what it is, despite having lived in this body for 28.5 years & knowing it better than they EVER will.

    Take North Manchester General's A&E duty doctor on the night I went in with a badly subluxated wrist (partial dislocation): X-rayed the wrist; left me to sit on a hard plastic chair for 3 hours whilst the dose of Oramorph I'd taken before I left for the hospital wore off and left me in agonising pain from sitting too long (as my hips tend to slip out when that happens); after 3 hours & a bit of nagging on my part, the duty doctor then informed me the X-ray didn't show any problems & I could go home.

    I gave a slightly melodramatic sigh of extreme frustration & told the doctor to take my hand in a particular way & hold on tight to it. I took a deep breath, then yanked my wrist backwards & into place properly - a little help doing that was all I'd really needed, as it was the right wrist & I'm right-handed. The resounding snap/crack as it relocated made the doctor visibly wince. I hope he's since learned his lesson, but I won't be going back to that A&E again if I can help it.

    Oh, and I also avoid Maxillofacial at Manchester Royal Infirmary, as one of the male surgeons there removed 3 of my adult teeth whilst completely disregarding the explicit instructions my specialist at the Dental Hospital had given to him because she was female & he assumed he knew better.

    I was supposed to be going under general anæsthesia to have those teeth removed because benzodiazepines don't successfully sedate me and lidocaine is effectively useless because it wears off so quickly. All that was on my notes.

    What did this guy do? IV midazolam (a benzodiazepine) & lidocaine. He absolutely insisted and actually said he'd refuse me treatment if I didn't let him do it his way. At that point I'd needed to get those teeth out for 2 years and they were so badly infected they'd have caused a risk to my life had I not had them extracted, and I knew how long it would take to get treatment if he did refuse. I didn't fancy the possibility of dying in the meantime, so I was basically coerced into compliance through that.

    (Part 1 of 2)

    1. (Part 2 of 2)

      Anyway, what the combination of meds did... I was not sedated. The midazolam *paralysed* me whilst I had the IV in - I couldn't lift a finger - & because the lidocaine wore off as quickly as it had been given, as it does, I could feel *everything*. On top of which, the amnesiac side-effect of midazolam worked partially, enough that I couldn't recall who'd treated me so I could complain about him(!) but not enough to forget what he'd done to me... *and*, on top of THAT, he broke 2 of the teeth off so badly that he left chunks of sharp enamel in my gums that took a month to work their way out.

      All because he didn't want to listen to a female medical professional and her female patient. Doctors like that guy make me SICK. Sadly, sometimes literally.

      Don't get me back onto the trouble with diagnosis of my EDS in the first place, not today anyway - those 15 years of mine & my mother's concerns being written off as "growing pains", "depression", "hypochondria", "attention-seeking" (because of course little girls (or teenagers even, later) can't be ill if their mum has cancer, they must just be faking it because they see Mum get attention for being sick! *headdesk* Never mind the traditionally-inherited joint disorders their Dad might have passed on to them!)... There's a major, vicious streak of sexism in the medical profession, as well as the paternalistic crap. It needs to be eradicated. FAST.

    2. I don't (think) I have EDS, but I do have hypermobile joints and my dentist has never heard of the problem with dental anaesthetic and the condition. I am resistant to lots of pain relief, and I'm currently putting off going to my dentist till it gets so bad I can't cope. My dentist is lovely and gives me lots of injections in the affected area and works quite quickly but I ALWAYS feel the pain regardless. :(

      When I read the list of problems for people with hypermobility I suddenly realised that I had ONE condition with a broad spectrum of symptoms/problems and not lots of "hypochondria" episodes, but I cannot get any medical professional to "join up the dots".

    3. Glen, if you have hypermobility syndrome - which as you describe you do, not just "hypermobility" which is simply hyperflexible joints with no other symptom (including a lack of pain) - then you have EDS. They're the same thing, the labels are just on a spectrum.

      Get your dentist to try articaine. That's what my special needs dentist uses on me, because lidocaine's useless on me, but articaine works like a charm. Also, numbing one tooth at a time and using a bite block can also help. (I met a brilliant dentist on Twitter who gave me all these tips after working with several EDS patients in Iowa, and they have been SO much help to me!) Good luck.

      What region do you live in? There are only a very few EDS/HMS specialist clinics in England, 1 in Scotland (Glasgow) & none in Wales (most there go to Bristol). London, Gateshead, Manchester, Bristol and Stanmore are the main centres I know of. Try getting your GP to refer you to one of them - and if they won't, ask someone else until somebody will. I had to go through 6 GP practices (and 3 districts!) before I got a GP who didn't write me off at first sight of the first guy claiming hypochondria, but I'm very glad I did.

    4. I was dismissed by a EDS/HMS specialist who shall remain nameless as I had a previous dx of depression - he tried to trick me into taking an SSRI as a pain medication after I was blamed for having an allergic reaction to amatriptaline (apparently my skin in in on my hyperchondria/malingering too) I had to take the first pill in front of them - they were very inssistant they see me comply with 'treatment' This regardless of the fact I had told him I knew SSRI's are not used in pain management, what a dose for depression was, that I knew that is what he was trying to give me AND that the one he was trying to put me on had caused me to try to kill myself three times - it's not in my notes as I couldn't get a GP to believe me that it was not my depression (been in pain due to undx EDS/HMS will do that to you) and was infact their treatment causing the problem. I had to come off it myself unsupported, a very bad thing to do, especially while suffering from suicide attempts (note attempts NOT ideation - I'd had suicidal ideation at that point for 12 years so I knew the difference) I still get withdrawl probs from that 10 years later no further suicide attempts though!
      I hate Dr's I hate having medical treatment, I hate being disblieved, I need to see someone about around 5 medical problems I currently have including assessment for aspurgers/autism but cannot bring myself to go to see anyone as they are all so awful.

    5. Trialia - Kali's the only person I ever met even more resistant to going into hospital than me. Even breathing was pretty much optional in her world ;)

  6. I so agree with this, having seen/experienced it more than once over the years.

    My mum battled through several years of 'women's problems/all in the mind' excuses before getting her MS diagnosis 20 years ago. Then, when about 18 months ago she developed new pains and mobility problems, despite her telling everyone that it was different to her MS, and her MS having been static for so long, she was ignored, even by A&E (and that's a whole other scary story), until someone finally took an xray ... it was final stage breast cancer (a familial illness) that had gone to her spine. She passed a few months later.

    I have spent over a quarter of a century trying to get docs to believe I'm actually ill, getting the full gamut of 'puberty/stress/womens problems/pregnancy/post pregnancy' excuses yet again, only to finally be diagnosed with Fibro and CFS earlier this year when my health reached a point where I was effectively housebound ... I still don't believe it's the whole story, but as far as the medical world is concerned, I'm diagnosed and that's that.

    And my son has had bowel problems from day one, but no matter how many docs I see with him, all they ever do is either give potty training tips (he's 8) or tell me he's constipated - when if anything he's the other way (I've seen severe long term constipation in another son, I know the difference).

    It scares me sometimes to even go to the docs for fear of what I'll be labelled as ... you can only go back so many times before they start to label you hypochondriac or Munchausen.

  7. I think it's mostly arrogance, Sue. I was given advice by a cardiologist recently (cut down my diuretics despite empirical evidence - repeated attacks of pulmonary oedema, one of which almost killed me in August - that I need a higher dose), and reduce my beta-blocker to a dose that I know from experience will plunge me into tachycardia. Both, together, might kill me.

    I pointed this out to him, he ignored me.

    A well-informed patient - and I am - should be an asset to a doctor, but too often we're seen as a challenge, and "doctor knows best" is still too prevalent.

    It's taken over 20 years for my GP to admit that, in some areas, I know more than him (as I should - I have far more time for research, and for keeping abreast of new developments). You'd think he'd be happy about that - if nothing else it saves him a lot of time he would otherwise spend explaining things to me. But no - he's not happy at all.

    1. For YEARS I told doctors my Crohn's was worse just before a period. They always insisted it was just period pains. Why on earth would they think I don't know the difference between pain in my womb and pain in my bowel? Anyway, years later, my consultant told me wryly some new research had shown that menstruation did indeed make the actual Crohn's wrong.
      Ah, that's OK then, if a researcher discovered it it must now be true. I expect that researcher got a good hit of cash to "discover" something they could have known years before, if they'd only listened to their female patients

    2. My GP has suddenly sprung into action. After spending over a year refusing to believe the pain of my lymphoedema (and now an ulcer the size of my hand), was as bad as I claimed (intolerable and pushing me towards suicide), and flatly refusing to increase my morphine or look into what I wanted - amputation - out of the blue he's doing exactly that and has found a willing surgeon.

      Which leaves me with a question - has he finally conceded I do know what I'm talking about, or does he know something I don't?

      Either way, he's not saying.

  8. I've had so many bad experiences from doctors and nurses of all levels who fail to see beyond the fact that I'm fat. I've been told to 'hop on the scales' when I had conjunctivitis, overheard "who said THAT could have an epidural?!" & been laughed at when a juddery bed made me wobble a bit when I was GIVING BIRTH, been told to 'put my feet up' when the Primary Lymphoedema I'd had since a teen was so extreme that lymph fluid was seeping out of my skin, being left to go 19 days overdue with No.2 Son because I must have 'got my dates wrong' and even why I was reporting significantly reduced foetal movements (No.2 Son has Autism), been asked to strip to my underwear and literally poked with a pen whilst being told I looked repulsive (I was 13 for that one) and, the piece de resistance, told I had either a mental illness or SYPHILLIS when it was MS. I've got tons more but you get the gist. I can only recall TWO situations when I was listened to; once when I was able to pay privately for a laser ablation to help with heavy periods and once when I needed help with the endometriosis that the ablation helped reveal. That Gynae actually said that she wished ALL her patients were so well informed about treatment options and we had an intelligent, balanced conversation. I'd gone in to the appointment armed to the teeth and prepared to fight - again. Nobody should have to do that.

  9. A GP who *decided* that I was only after antibiotics for my 'flu, when in fact what I was trying to say was "I'm frightened by how badly this 'flu has affected me, I felt like I might actually die of it - there must be something seriously wrong". He would not listen, gave me a lecture about antibiotics and viral infections, and dismissed me. Followed by another 2 GPs who saw his notes and decided my enlarged lymph node was probably nothing and not worth ordering a <£10 blood test.

    Because they didn't listen, my lymphoma went undiagnosed a further 6 months, by which time it was stage 2b and I had at least 13 tumours. I had to have 6 months of chemo instead of 3, and radiotherapy which exposed me to secondary cancer risk and which, if I had been diagnosed sooner, I would not have needed. Costing the NHS tens of thousands more than necessary. Just because the pompous arse wouldn't listen to me for five minutes.

    I'm not ungrateful for the fact that the NHS did, eventually, save my life. I'm just exasperated at how much these common but unneccessary attitudes, passed down to each generation of new junior doctors, cost the nation.

  10. The article is something I wager most of us have experience of (especially women (psychosomatic?)) and tallies overwhelmingly with my wife's almost daily occurrence with her patient histories .. I'd like to add that "our" experience suggests a reduction in basic clinical diagnosis and pathology knowledge and ability of our GP's and doctors with the passing of each decade. Basic conditions and even red flags missed repeatedly .. the waste, the danger and inefficiency is rarely noticed by the public, except for chronic patients like her and therapists like my wife who are in a unique position to encounter the sheer volume and frequency of what must often amount to malpractice and incompetence. Is it just time constraints? No, but they can reel off what drug goes with what condition at the drop of a hat, but it seems they can't often tell a pneumonic rattle from a plain phlegmy chest ... my old doctor could though ;-)

    " ...
    Don't Worry Your Pretty Little Head
    OK, this really has to stop.

    I've written countless articles about the failure of doctors to listen to their patients. Whether that failure comes from judgement (they're "just" an addict, they're "just" depressed, they're "just" malingering) or from arrogance (I know best, what would they know, I have the medical degree) I honestly believe it is the single most dangerous factor in our healthcare system. But the frequency of it astonishes me...."

  11. Sue - another brilliant, thought out piece.

    Cannot say the #Dani experienced this throughout her life - we did not have any of these problems while she was a paed or teenager.

    #Dani always knew what her body was doing but in "that hospital" they blamed her for her symptoms in 2007, which ended up with her becoming very disabled and into a wheel chair, then having to have open heart surgery after requesting a heart scan - reluctantly agreed to - her heart valves being ruined because no-one seemed able to see what was happening it was all Dani's non-compliance that was at fault and Sheila Picken told me that Dani would die because she would not do as she was told.

    Then four years later she was diagnosed with constipation due to her upper abdomen being very distended - luckily she did not take the medication given - she had ascitis infected with listeria - to this day they have no idea what caused it as no PM was allowed.

    Again we did not have any issues with our GP - she looked after Dani very well from when we first arrived in Bedford until just before Dani died. Unfortunately she was on extended leave during Dani's last couple of months and the rest of the GPs in our practice allowed themselves to believe what Dani's consultant told them, so the coroner was misinformed regarding Dani's very sudden death.

    Some of her story here - hope you do not mind Sue.

    1. Of course I don't mind Helga. I'd be delighted if I thought I could help you in any way to deal with that Other Place x

  12. The problem is that we don't know the baseline. It's never a story when a patient goes to their doctor 100% sure that they have cancer, and then the doctor says they just have a cold and 3 days later it turns out that the doctor is right.

    While I'm sure there are cases when the patient was right, and I've certainly felt like my doctor doesn't know me as well as I do, if you looked at the numbers you'd probably find that in most cases the doctor was indeed right.

    1. You've GOT to be kidding.

      A specialist in the field of heritable connective-tissue disorders did a study last year over all English rheumatology patients and found that 95% of patients ultimately diagnosed with Ehlers-Danlos syndrome had gone 5 or more years misdiagnosed or undiagnosed - and a great many of us were written off as having ME or fibromyalgia without the doctors ever seeking the real cause.

      I had to move twice to find a GP who would actually bother to pay attention instead of writing me off, and when I was finally diagnosed with EDS - after 15 YEARS of trying to find an answer, mind you - I was told that had I been diagnosed 10 years earlier I would not be "falling apart" and they might have been able to do something to help me stay well enough to work. As it is, I am so disabled at 28 that I use a powerchair full-time outside my home & part-time inside it, am on more daily morphine than the average palliative cancer patient, and all the doctors can do now is try to slow down the deterioration.

      All this seems to stem largely from the systemic fact that male doctors seem to like to write off women as hysterical or hypochondriac (most EDS patients are female). The only proper healthcare I've ever had up until I met my cardiologist has been with female doctors and dentists - though even they are prone to being dismissive of problems involving the reproductive system, which is another result of the way "women's issues" in medicine are so often regarded as a somehow lesser speciality.

      I've heard tales of sexism in the medical profession from every woman I know, and very rarely from the men. That probably has a great deal to do with your attitude on the matter: you simply are not likely to experience the same kind of treatment, if you're a cisgendered man. Women and girls get this from childhood with medical "professionals". Just take a look at my first comment, the bit about the maxillofacial surgeon.

      On top of that, the rheumatologist/surgeon who operated on my shoulder without trying to find out WHY it kept dislocating (a classic sign of EDS!) before opening me up? Also male, and also very dismissive of my (ultimately justified) concerns about my treatment. Had I been diagnosed correctly in the first place, he would have known it was useless to try the operation he did - it failed, of course, but had he worked out I had EDS he would have known it would fail.

      It's a big problem, and it gets glossed over a LOT. Your comment here is not helpful on that front.

    2. First, I am sorry that your misdiagnosis made your medical problems worse. That is not an outcome that anyone wants.

      Unfortunately if the symptoms for a particular syndrome are similar to a different problem which is more common, then from a numbers point of view it's more likely to be the more common problem until there's strong evidence that it's the rarer syndrome. That's an argument for a better way to diagnose this rare syndrome, and for making doctors aware of the potential for a mis-diagnosis when faced with that set of symptoms.

      Again, however, you have to bear in mind the baseline of patients who think they have a more severe problem than they actually do. If doctors are right more often than patients are right, then the doctor is going to trust their opinion more and they are correct to do so.

      Your point about sexism is believable intuitively, but before anything can be done it merits data on doctors' opinions of women, or on the number of mis-diagnoses split by gender. Those studies might exist already, I don't know. If doctors are making bad diagnoses for women more often than they do for men, then they'd want to know about it.

    3. Just to say, it'd be pretty easy to check this empirically. Make up a list of symptoms, then send it to 100 doctors and ask them what the problem is. For 50 of the doctors tell them it's a woman, and for the other 50 doctors tell them it's a man. If the doctors take the man's symptoms more seriously, then that's proven sexism.

    4. Hi David. I'd love to agree with you, but I just can't. I've spent an average of one month of every year as an in-patient for the last 25 years across several hospitals under various governments. In that time by far the majority of patients I met have stories like those left as comments above.

      Whenever I write a post, I know from the reaction it gets when I've hit a fat old exposed nerve. ALL day today, hundreds of people have shared their own stories of doctors failing to listen. I'm the last person to believe that anecdote is evidence, but I do have a fairly unique window on this through extensive experience.

      There's a genuine problem here and we really need to address it.

    5. But everyone remembers and tells stories about the time that a shark killed someone. They don't remember or tell stories about the time they went into the sea and nothing happened.

    6. What makes you so keen to conclude this isn't an issue? Sure I can't give you national statistics, but I'm telling you when I write these kinds of articles they receive by far the most comments, shares etc. I'm telling you I have 25 months experience of actually meeting people who are seriously ill in hospital and almost all of them say they weren't listened to. With such consistent observation, where are all the people saying their doctors have always respected them and included them in their care?

  13. I have a story that is really quite bad.

    I actually *was* diagnosed with Munchausen's. It was when I was 15 and this wonderful label has stuck with me for my entire life. It means that when I started developing symptoms that were much like COPD, it was not only written off as "in my head" but I got told off (until I started crying) for coming in and wasting precious doctors time.

    I don't have Munchausen disorder, I just want to put that out there. What was really going on is that I was schizo-affective with some disassociation thrown in (because I was abused, but I didn't know I was being abused at the time) which ultimately lead to my psychotic symptoms not really being "real" symptoms (as in, I was aware that somewhere in my head this wasn't all real). This lead to the doctors saying I had Munchausen disorder and was doing all this "for attention".

    So you fast forward time and now I am 29, and doctors are still telling me that I'm making everything up - even for physical conditions.

  14. I spent seven years being told there was nothing wrong with me. I later saw on my GP records 'has Lloyd Geotge Syndrome!!!'. I had Waist down paralytic polio as a child but recovered well and became a policewoman, lifeguard and swimming teacher. My prior polio was not in the equation till I mentioned it and going to the Health Information Service read Patricia Rock story in the Independent. Reading so much that matched what I had been saying for seven years i took it to my GP. ..... It still took two more years, a second hospital and providing medical articles from abroad before I got my confirmed diagnosis of Post Polio Syndrome. Ten years and third appointment before my swallowing issues were confirmed at last... Because a report i took with me at the third appointment caused them to test me in a different way and see the problem. How many people in this country research and know more about their condition than almost every health professional they see? It will be 19 years next month.

  15. Hilary - One of the things that frustrate me more than almost anything, is when a very young doctor or nurse, perhaps just a year or two out of general training tries to explain something about my Crohn's as though I just got it yesterday, not 30 years ago.

    Ie, I complain about TPN not going up for 4 weeks when it always has at this weight and they reply "Well, TPN does have risks attached Susan" I've clearly had TPN many times in the past, why on earth would they patronise me and assume I know nothing about it? I almost certainly know very much more than they ever will.

  16. I was diagnosed with Crohn's about six years ago (losing count these days) after years of being treated for IBS but was unable to continue at work and refused early retirement because the pension authority doctor said I just needed some CBT and exercise and I'd be able to work full time again. My daughter who had similar symptoms since she was a teenager has only just been told 'you might have Crohn's' after years and of pain. Various doctors had told her she was TOO YOUNG to have Crohn's! She is now 26 with an Education degree and training to be a teacher this year. The irregular hours of teaching and training and travelling from one side of Leicester to the other every day are now making her flare again ... after a relatively peaceful year while she worked as a teaching assistant living close to her job. I hope the new doctor treats her soon, she still has so much of her life left to do great things in.

  17. Sue, please don't worry your little our new and remarkable privatised NHS..doctors will pander to yur every whim and order test galore..thats the good part..the bad part is without health insurance to pay for might as well whistle dixie for all the attention that will be paid to you..forcing you to suffer at home..unless you can afford the daily bed/food charges..

    I despair that people are so blind to not see this coming down the for camerons protestation today about how he'd never fail the NHS...the man must have balls of steel to lie so blatantly..but repeat a lie often enough....

    We are rapidly reaching what kennedy spoke of...

    Those who make peaceful revolution impossible will make violent revolution inevitable.

    John F. Kennedy (1917-1963)

  18. All the above stories are so sad, and maddening too.

    The fact is Sue that psychologists are becoming to dominate physical care. I won't give the long story but suffice to say that my as yet undiagnosed neurological condition has primarily been treated with constant referrals to psychologists.

    Last year - due to the worsening affects of cartage dislocations apparently due to my muscles not supporting them - I could not straiten my legs at all and basically walked around like a monkey and with my muscles being so weak my legs soon gave up on me.

    I went to the doctors - pushed in a wheelchair by one of my carers - and she said she'd refer me to Rheumatology. I knew then what would happen.

    3 years previously when I'd been referred to that department, yet again the neurologist said that I would have to see a psychologist as part of the multi disciplinarian team that also included Pain Specialists and Physiotherapists.

    The first few appointments were OK. The psychologist asked me to go onto a 2 day a week programme but I said that I was so sick I would barely be able to attend the psychology appointment; he said that it was OK and that he understood.

    This psychologist brought up my traumatic past that I had already dealt with but I wanted to engage with the programme because I was so desperate at this new deterioration in my health - the spasms that were excruciating on top of everything else. He said that he would not leave me in a state and would give me more sessions if needed.

    3rd session, 10 minutes in, he pushed my file towards me and said that he could do nothing for me unless I agreed to attend the full 2 days a week - mornings in the Gym and afternoons in lectures regarding pain (being all in the mind as I found out). I reiterated that it was impossible for me. He insisted it wasn't, that his research - concerning 'mindfulness' meditation - proved that he could make people less disabled. I said that his research was skewed because people as sick as me would not possibly be able to attend. He said that if I didn't agree to the programme he would block any further access to Rheumatology. I sourced my own therapy, though it took a further few years for me to recover psychologically.

    Last year then, after my doctor's referral, guess what came in the post 2 weeks later? I opened the letter and the covering page said 'what to expect in your psychology appointment'! I was livid. I went back to the GP and she said she would investigate. I phoned her secretary a few days later and she confirmed that I would have to see a psychologist.

    So basically I'm blocked for any further physical help unless I agree to the 2 day a week psychology programme! I sourced my own physiotherapy as before and in a couple of months I could walk again albeit with permanent damage now. I also did some online CBT therapy to help with the pain

    I am currently so sick that it's frightening however. I feel that even if I expect cancer it is pointless going to my GP as I'll just get another psychology appointment or a referral to a pain 'specialist'. The last one I saw as part of the above programme said that my spasms are panic attacks (my own GP has seen me in spasm), my inability to travel is all in my mind (I can't travel for more than about 25 minutes or I can't straighten my legs and the fatigue also becomes severe), that I do not have trigeminal neuralgia (I have a diagnosis from a maxillofacial specialist), that I seem to think that I'm a film and music technologist (I didn't think you needed to take your degree certificates to hospital), and that all of my problems lie in my 'complex history'. So basically I'm a fantasist.

    When I die I've asked my family for a specialist post mortem to prove my physical state, and then they can sue the crap out of them.

    Psychology is becoming a dangerous inclusion into patient care. I can understand that when you're ill you may need such help but physical therapy is PRIMARY!

    Sasson Hann

  19. My local hospital is a teaching hospital.

    In April 2013 I had my right pleural cavity aspirated as the fluid build-up caused by my heart failure was compromising my COPD.

    In January a young doctor assured me I couldn't have COPD (which I've had since 1996), as I've never smoked (rubbish, of course).

    18 years ago, shortly after the diagnosis, a cardiologist at the same hospital told me much the same thing. Clearly this nonsense is ingrained.

    While an in-patient with pulmonary oedema in August, I was also told no smoking, no COPD by another young doc - who's teaching them this garbage? I was also seen by a different cardiologist who went to great lengths to explain to me how I had both right and left side heart failure, and what it meant for my life expectancy (not great).

    A few weeks ago I saw the original cardiologist who has now told me my COPD is Stage 3 (just End Stage to go and they can screw down the lid), but now he's denying I have heart failure!

    Just how am I supposed to trust any opinion he might have? (I trust the numbers, they clearly say stage 3 COPD), but if I'm admitted again - and it's very likely - his denial of my established heart failure (Dx 2011), could kill me if it's missed by an overworked A&E doc.

    1. My friend got pancreatitis and his doctors refused point blank to believe he didn't drink alcohol, convinced alcohol abuse was the only possible cause. I had known him very well for 12 years and had never seen him touch a single drop of alcohol. He always, but always ordered diet coke. Not only do I assume it must be dangerous to believe this, but I can't tell you how insulted and hurt my friend was at being called a liar by strangers :((

  20. This comment has been removed by the author.

    1. After reading the horror stories about medical care, I reckon we have the best doctors we could possibly have. I have been with this Practice for over 61 years and I have seen doctors come and go. We always receive the best medical care, I had to speak up, there are some excellent doctors around. Ours' is just outside the town centre.

    2. Deleted because of spelling error.

  21. Dear Sue,

    I share your concern.

    I also have focused on it since my medical school clerkships when it seems that doctors couldn't 'figure out' what was wrong with the patient, and instead prided themselves on 'coming up with the differential diagnosis' of about fourteen different things that could be causing the condition--then boring me on and on with their 'mental masturbation' over the battery of tests needed to help this patient out.

    What we both agree, with the many of the treating physicians 'just don't get it'.

    What I see, in a different health care system where I am in Private Practice--is that in the NHS there isn't as much 'incentive' for the doctors to 'get it right'. Even at some powerful managed care 'Big Box' hospitals where my family members have been treated and the doctors are on salary--paid by the hour and go home at a predictable time--it took enormous amounts of persistence on MY part to oversee the medical care of my loved ones and direct the care as a 'Patient Advocate'.

    Medical systems are the most complex organization on earth that have ever existed.

    But when it comes right down to it, in my heart, I sense the ultimate thing that concerns both you and myself is a Lack Of Intuition on the part of the provider, which is exacerbated by Poor Listening Skills, which might be also made worse by some Burn Out on the part of the physicians.

    With Reiki, I have become so much more 'in tune' with my patients! So much more compassionate in my care for them too.

    I love being a practicing anesthesiologist. I love helping my patients at their worst, and watching and protecting them from harm and pain as they undergo their operations. I share the joy of the parents as their little ones make it into the world at the Labor and Delivery suites...

    So perhaps, in time, as Energy Healing, increased Consciousness, and INTUITIVE AWARENESS trickle in to the organized conventional health care, perhaps things will improve for us all.

    Aloha and Mahalos,

    Carla the Reiki Doc

  22. I'm not sure it's necessarily sexism. A lot of men I know have had exactly the same treatment. My question is, why is this attitude apparently less prevalent than among physios and nurses? I don't understand why I can have a perfectly fine conversation with a physio or a pain nurse and get very helpful support from them, but even doctors who are global specialists in my condition have rarely been able to listen to me. I think that happened once in 20 years. Any doctors like to speculate on what it is about medical training or selection that causes such damaging attitudes?

  23. This sexism thing is interesting though. Obviously, I've only ever been on female bays, so have met very few male patients overall.

    So my experience really is nothing but anecdotal here. However, I had a male friend I was certain had EDS - he had every last indicator. I gave him a list of the things he should go to the doctor to say, the things I knew would be like waving a big flag that said "EDS" in his face. He got an immediate diagnosis. I've never known a woman to get that, but of course it could just have been coincidence.

    I do think there is a tendency to blame women's symptoms on "worrying too much" or "being depressed" or "the vapors" (if you were unfortunate enough to live 100 years ago) I definitely think it takes very many women far far too long to break through those assumptions. However, whether men suffer from similar stereotyping, I couldn't say.

    1. I agree absolutely with your second point, but I've known a lot of different men dismissed by doctors as well. I think men and women might be dismissed by doctors for different reasons. However, my own highly unscientific sample of experiences leads me to wonder whether there's an assumption that women should be used to experiencing pain (and therefore a man is more likely to get help with pain), and that men should expect to deal with more mental health problems without support. Dunno.

      I've done relatively well in recent years using 'scripts' with doctors, prompted by my medical-family husband. He always says, never tell them what you think is wrong unless they're about to kick you out the door. Then only hint, and make them think they thought of it; never give any suggestion of vulnerability or fear, but give them clear (preferably visual) evidence of the effect on your life. And if all that fails, be very clear what you want them to do next and ask for it in a low, steady voice. Why sick and stressed people should have to go through this rigmarole is beyond me, however.

      I don't feel it's a 'white British male doctor' thing - I and others have had this kind of nonsense from doctors of the whole gamut of genders, ethnicities and nationalities. As you say, it's such a stupid waste of time and money for everyone involved.


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