The People's Pharmacy: Mending Mistrust–Can We Rebuild Faith in Medicine?

rvallee

rvallee

Senior Member (Voting Rights)
Mending Mistrust–Can We Rebuild Faith in Medicine?
https://www.peoplespharmacy.com/articles/show-1384-mending-mistrust-can-we-rebuild-faith-in-medicine

Posting because it uses ME/CFS as an prominent example of this problem, and the show appears to have a significant audience.

It's a 1h+ podcast, some preamble:


Decades ago, people trusted their doctors and assumed that physicians always had the patient’s best interests in mind. That belief has faded and trust in medicine seems to be in tatters following the divisive battles of the pandemic. In this episode, we consider how doctors might rebuild faith in medicine.
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Even before COVID-19, people were becoming skeptical about healthcare. Patients whose symptoms went undiagnosed and unaddressed felt that their doctors were not taking them seriously. Physicians reinforced that impression if they suggested that a problem like the extreme exhaustion experienced by people with myalgic encephalomyelitis/chronic fatigue syndrome might be psychosomatic. According to our guest, Dr. F. Perry Wilson, “The most powerful force in Medicine is trust.” It is the foundation for a therapeutic alliance in which patient and doctor can figure out what is wrong and how to make it better. Until we figure out how to rebuild faith in medicine, that kind of collaboration will be extremely difficult.
 
Did you think this was good bad or neither?

I’ve listened to quite a lot of the type of stuff that is introduced like this and I am wondering if it’s true to form or not. Because form generally falls well short of being worth one’s time. Mainly because Doctors and healthcare professionals are usually pretty ignorant about how the politics of their profession works, as this relates to their patients receiving or not receiving care. But you do get some mavericks who are prepared not to pull punches re the depth and extent of the problem. So if it happens to turn out to be the exception to rule I’ll give it a go.
 
did not click. shouldn't the goal to be to do the right thing instead of to be trusted?

us lawyers did soul searching in the 1980s/ they wanted a campaign to burnish their image.
 
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rvallee said:
Mending Mistrust–Can We Rebuild Faith in Medicine?
https://www.peoplespharmacy.com/articles/show-1384-mending-mistrust-can-we-rebuild-faith-in-medicine
[...]


Decades ago, people trusted their doctors and assumed that physicians always had the patient’s best interests in mind.
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I don't think that's ever really been true (like most claims about how life was better/simpler in the past!). There are endless stories going back centuries about dodgy doctors and snake oil pushers.
 
Eleanor said:
I don't think that's ever really been true (like most claims about how life was better/simpler in the past!). There are endless stories going back centuries about dodgy doctors and snake oil pushers.
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Yup that framing is quite a doozy. They just never heard about it, and it's why social media is such a frequent target of their ire: it's the only place mistreated and gaslighted patients can find out that it's not just them, not unique, not even rare.

Systemic problems like this used to be buried by default. Now it's not only harder, the evidence is cumulative. It piles up. It doesn't get erased, or placed in soon-to-be-forgotten boxes. And when AIs will scoop up the whole WWW, it will become even harder to maintain this fiction.

Of course the solution is not to rebuild trust here, but to undo the things that destroyed it, to fundamentally change what causes this problem. The profession doesn't seem to be there yet, they still think psychosomatic ideology is just a problem of perception and messaging, and that's just one of many reasons for the earned distrust.

The benefit of the doubt is generally deserved, but it's more rational to be quick to stomp it down once people give you reason for it. Otherwise you just get trampled over.
 
rvallee said:
Decades ago, people trusted their doctors
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In my family's experience, that should read:

Decades ago, people were less able to challenge their doctors

Partly because knowledge was guarded jealously by a paternalistic system (prescriptions written in Latin?), partly because if you fell out with the only GP in your community it might cut off your access to care, and partly for cultural reasons—when I once asked my dad why he hadn't asked for a second opinion, he looked horrified and said "I can't argue with an educated man!".
 
@Kitty the good old days. Your story is so upsetting. But I also don’t think things are that much better now, the patients are less deferential and will assert themselves and extract what they need from time to time but the doctors do bide their time and then punish us for it heavily unless we’re well connected and resourced in which case we are free to have at it.

Also we’re heading back to the one doctor and don’t cross them, if we’re lucky otherwise no doctor at all. The rate Gp practices are closing and doctors are quitting here in England because our government has broken everything and it’s such a hell hole now. Working and living conditions are killing people, and doctors can go somewhere else and have the comfortable quality life that they trained for.
 
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rvallee said:
Of course the solution is not to rebuild trust here, but to undo the things that destroyed it, to fundamentally change what causes this problem. The profession doesn't seem to be there yet, they still think psychosomatic ideology is just a problem of perception and messaging, and that's just one of many reasons for the earned distrust.
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I can't see how this problem will ever be fixed. In many cases the trust issue goes in the direction of "doctor doesn't trust patient" rather than, or as well as, the reverse. How many women complain about excruciating period pains and get labelled as a hypochondriac and drug seeker as a result? And once that label is on your records you're doomed because all doctors will see the warning flags on your records and won't believe you. Even if your problem is finally found and recognised the warning flags never get removed.

I gave up the struggle with doctors about twelve years ago. If the problem I have is invisible (or can't easily be checked) I won't go and see them. If I ever have a visible problem I will.
 
On a related note, the government's benefits green paper of two years ago used the words "trust" and "rebuilding trust" something like 17 times. Clearly they have completely abandoned that idea :rolleyes:

Those with power do seem to get the arrow of causation the wrong way round, as raised already

  • Doctors need to trust / believe patients
  • People need to be well to work, it won't make them well
 
I don’t know whether doctors ever embraced this aphorism from William Osler, but it always comes to mind for me when my daughter is dismissed.

“Listen to your patient, he is telling you the diagnosis”

I just wonder what all the dismissiveness is about. You could speculate that it’s about getting rid of patients quickly, but sometimes doctors spend more time telling people there’s nothing wrong with them than it would have taken to do have a productive consultation, so I don’t know. Poor training? Lack of confidence to do a proper physical exam? Burnout?

Perhaps doctors could be fitted with a device that gives them a small electric shock every time they try to dismiss someone.
 
Ash said:
@Kitty the good old days. Your story is so upsetting. But I also don’t think things are that much better now, the patients are less deferential and will assert themselves and extract what they need from time to time but the doctors do bide their time and then punish us for it heavily unless we’re well connected and resourced in which case we are free to have at it.

Also we’re heading back to the one doctor and don’t cross them, if we’re lucky otherwise no doctor at all. The rate Gp practices are closing and doctors are quitting here in England because our government has broken everything and it’s such a hell hole now. Working and living conditions are killing people, and doctors can go somewhere else and have the comfortable quality life that they trained for.
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The balance of information has changed massively. The balance of power remains the same.
 
rvallee said:
The balance of information has changed massively. The balance of power remains the same.
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OMG @rvallee you nailed it. A perfect distillation.

Every time I think about this dynamic I hit a mental brick wall. Do I wish to be cast back into the Good/Bad old days of society and medicine, no I do not.

I want what we’ve fought for and won I want what we’ve incidentally been given access to. But acutely I mourn what’s been taken from us. Things used to be terrible especially so for some of us.

But things used to be good too, controlling infectious disease in hospitals was once of the highest priority. I wasn’t around to see that but my medical family were. At one time if you lived in the right place your doctor had enough minutes in their working day to hear what you had to say. If they wanted to that is. That’s gone.

Now at huge personal cost I can leverage theoretical rights that were never before available to us to extract a little something of what I need from the system.

No, I would not opt for more powerlessness or exclusion from knowledge. But how often can we with so little social capital access the technological care that has advanced with time? It seems practically impossible too many of us are too sick to fight for it.

But we’re never too sick suffer an emergency requiring hospital visits that are ever more likely to kill us or further degrade our lives, visibly filthy grossly unhygienic plague pits that they now are. Just the GP? Yes you will be breathing COVID take it or leave it that’s your lot.
 
Ash said:
At one time if you lived in the right place your doctor had enough minutes in their working day to hear what you had to say.
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I find it interesting that at least some GPs treat elderly patients very differently. They feel that as the named doctor, they should see the patient regularly and where possible make the home visits themselves, because familiarity and continuity of care is so important in this group. I didn't know this until my parents' generation got old, but across different parts of the country (as well as different GP practices in the same city), there were remarkable similarities.

I can see it makes no sense in many cases, but there are other groups where a similar approach would save a lot of time and mean better care. I was lucky enough to have the same GP for three decades, and I could omit a huge amount of detail and history during appointments because he already knew it. Now, consultations are mostly taken up by things I don't need to discuss, but are necessary background. The actual problem is confined to the last 90 seconds, so I sometimes need two appointments to get to it properly.
 
Kitty said:
I find it interesting that at least some GPs treat elderly patients very differently. They feel that as the named doctor, they should see the patient regularly and where possible make the home visits themselves, because familiarity and continuity of care is so important in this group. I didn't know this until my parents' generation got old, but across different parts of the country (as well as different GP practices in the same city), there were remarkable similarities.

I can see it makes no sense in many cases, but there are other groups where a similar approach would save a lot of time and mean better care. I was lucky enough to have the same GP for three decades, and I could omit a huge amount of detail and history during appointments because he already knew it. Now, consultations are mostly taken up by things I don't need to discuss, but are necessary background. The actual problem is confined to the last 90 seconds, so I sometimes need two appointments to get to it properly.
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Yeah @Kitty you’re right there is a different attitude to elderly people. I think even in my area elderly folks are sometimes treated better than younger people but there’s no getting Gp appointments for most of them and respect for ones elders isn’t super high here I feel, I’ve heard nurses and receptionists be incredibly rude to older patients who are slow to follow instructions.


Where there is better treatment which I’ve definitely heard about and seen, I think it comes maybe from society’s perspective that when you’ve served your community as a proper person a worker without significant impairment you’re entitled to some care you’ve earned it. But also maybe because older people have the very visible impairment of age inscribed onto their physical bodies and everyone including doctors understand that physical and cognitive function diminishes with age, so when symptoms are reported they’re considered more than likely age related disease, rather than say the imagination or malingering related non-disease that they are primed to see in a working age working class person failing miserably to fulfil their allotted roll in society, probably too neurotic or work shy to function.

But I’ll tell you what you don’t want to end up alone in A&E and Elderly you’ll be lucky to get a drink of water if you can even get in the door without an ambulance which you’d count yourself lucky to get.
 
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Ash said:
But I tell you what you don’t want to end up alone in A&E and Elderly
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Applies to inpatients too. When my older relatives were in hospital, family members often had to get things for, assist, and even advocate for elderly people who didn't have any visitors. I remember one elderly lady who'd been given incontinence pads but wanted to use the toilet, and all she needed was an arm to steady her as she climbed down from the bed and reached for her frame. There was often no one to do it, so she'd wait until visiting hours. Another wasn't eating properly because she had trouble holding ordinary cutlery—I ended up bringing her one of my adapted sets, which helped but only lasted two days before disappearing without trace after a nurse sent them back to the kitchen with the dirty plates.

It's not all recent, either, it dates back at least 10 – 12 years.
 
Kitty said:
Applies to inpatients too. When my older relatives were in hospital, family members often had to get things for, assist, and even advocate for elderly people who didn't have any visitors. I remember one elderly lady who'd been given incontinence pads but wanted to use the toilet, and all she needed was an arm to steady her as she climbed down from the bed and reached for her frame. There was often no one to do it, so she'd wait until visiting hours. Another wasn't eating properly because she had trouble holding ordinary cutlery—I ended up bringing her one of my adapted sets, which helped but only lasted two days before disappearing without trace after a nurse sent them back to the kitchen with the dirty plates.

It's not all recent, either, it dates back at least 10 – 12 years.
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Yeah it’s terrifying isn’t it?
Are they gonna kill us off before we get elderly through neglect abuse and mass infection, or are we fortunate enough to survive long enough to meet this fate? And how many more of our elder relatives have to go through this in the meantime?

I don’t know exactly when but it was quite a few decades ago that helping people with their basic bodily functions dropped off of the list of things that nurses were supervised to do. I don’t think without this anyone should really refer to ‘inpatient care’ as it’s clearly more an inpatient survival of fittest type deal. Given the context this is…Umm….Words fail me.
 
Kitty said:
I'm in my mid-60s and have no family apart from a sibling who lives miles away, so I dare say I'll find out soon! :laugh:
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I think you’ve got a way to go before you’re considered a suitable candidate to access hospital treatment or be permitted to be seriously unwell, I don’t think they’ll let you just yet. The economic times have changed and everyone has to work till they’re 75 years pushing trolleys (so heavy…) in Tesco to afford food and rent, so you’re gonna have to be content with the malingering not permitted over the threshold status for a bit yet. Like a WASPI woman but for medical treatment rather than pensions… :sick:
 
Ash said:
rather than pensions
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AND pensions! :mad: I've been on sodding ESA for six years longer than I would have if they hadn't changed the rules, kept quiet about it, and then accelerated them even more so that we faced a cliff edge as well as short notice. I'll be better off when the pension does finally arrive, because I currently pay bedroom tax as well as having less income.

Ash said:
so you’re gonna have to be content with the malingering not permitted over the threshold status for a bit yet
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I plan to keep up the malingering, so I can be annoying for as long as possible.
 
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