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.

It has to stop.

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.

Courtesy of Sue Marsh at Diary of a Benefit Scrounger