Here’s another post written not by me but by Couch Turnip, who originally left it as a comment on the previous post ‘The Cult of MUS‘ (which was also written by her!) As so often with the stuff she writes, I thought it deserved a wider audience. It seems to summarise very powerfully the shortfall in both logic and compassion which lies at the heart of MUS. I don’t know which it is hardest to comprehend: that those in authority should encourage this change in mindset or that those required to make this change should apparently be so willing to embrace it.
It’s hard to believe that the practice of medicine itself would be manipulated and used as a tool to cut costs, but that is unfortunately where we’re at now.
I had an experience last summer that will stick in my memory. The attitude of hospital staff towards someone I was accompanying seemed to change dramatically with their perception of the situation. When the (young adult) attendee was clearly unable to walk and was struggling to stand up then staff behaved in an exemplary manner towards them – they appeared caring and sympathetic, rushing to help and locating a wheelchair in a hospital where such basic equipment seemed in very short supply. But on wheeling the patient into a different department about 10 metres away, the attitude of the staff was noticeably different. Here the patient, now marginally less compromised on account of the wheelchair, was treated as if they were catastrophizing their situation and I, as the wheelchair pusher, was their facilitator or accomplice in this. When they were struggling to get out of the wheelchair for an examination/investigation, I was told to get them to hurry up and move. When I slightly raised my voice in indignation, a security prescence appeared at the door. How can 10metres and a wheelchair make so much difference?
Whatever happened to real compassionate care? What happened to believing the patient and taking their symptoms and situation at face value rather than reading all sorts of pseudo-psychology into it? What exactly are they teaching medical staff about patient management these days? I shudder to think.
Since Couch Turnip wrote the above, the case has emerged of Gigi, a young woman with ME who is being kept in a psychiatric ward against her own and her parents’ wishes. ME rather than MUS, but you might call it more of the same. You could call it ‘institutional disbelief’.
By the way, Couch Turnip didn’t leave the only comment on the previous post. There was also a very good one from gildedcage, also well worth a look.
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It’s likely that they responded to the person having difficulties before they looked them up on the computer and found they were ‘frequent fliers’. This regularly happened to me, when I was younger and less obviously disabled: I used to get some quite nasty jibes from nurses and receptionists–and even one young paramedic–once they saw the notes. They’d even insist on you finding your own way home though you were still doubled up in pain, and had been brought in by ambulance and not remembered or been able, to pick up suitable clothing or money, or even door keys, when you were rushed in.
This is why it’s so cruel that you cannot have misinformation erased from your notes. You could insist on your own account being added to them, but they still won’t strike prejudicial comment from your records, and that’s what the A&E staff will notice first. If anyone has written something like ‘hypochondriasis’–which, nowadays, would be ‘MUS’–you are damned for life (or, at least, until old age adds extra disabilities that they cannot ignore.).
One time I was actually on a ward after a minor thrombosis, and there was an Asian man in one of the beds, who I don’t think I ever saw move or even eat. I thought he must be near death, but I had to witness a young consultant (who had a habit of strutting about and clicking his heels like he was a prison camp commander rather than a doctor: his job was to empty beds: not help people) verbally attack this frail old man in front of the whole ward, and force him out of the bed and his worried and confused family to take him home. I was amazed and disgusted to see this, and even more disgusted that other patients started tutting at the man as well, though he could have been seriously psychiatrically ill for all they knew.
The same young gauleiter, who was supposed to be a cardiac consultant, had tried marching me up and down in A&E with a clip on my finger to ‘prove’ that I was getting enough oxygen. This was before another doctor asked for a scan that showed the small clots in my lungs…
Sometimes our NHS seems more like a shark tank, but keep going, because there really are some angels in there who you will meet eventually.
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Just to be clear, the patient in question was not a ‘frequent flier’ and the hospital held no medical records for them prior to this episode. This was entirely down to the staff’s perception of the situation. It seems that using a wheelchair suggests to them that the patient is likely catastrophizing, attention seeking or trying to jump the queue, unless they put the patient in the wheelchair themselves. (In this case their colleagues, just 10 metres away, had).
I’m sorry to hear your experiences, spamletblog , they’re all too common now. But I wouldn’t be so confident about our old age. With NHS England eyeing up Michael Sharpe’s HOME study, I suspect old age in the future will be more of the same and those extra disabilities will be dismissed as somatoform/MUS too.
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