ME/CFS and the biopsychosocial model: a review of patient harm and distress in the medical encounter - Geraghty et al. 2018

Clearly, you are not a nurse and whatever i say will be responded by an angry answer. So I will stop argueing and say that we are currently on the same side, living with ME and having been stigmatized, ridiculed traumatized and insulted by the health care system.
There is the capacity for any health care professional to make excellent caregivers, by listening to their patients and addressing their health care needs professionally, whatever they are. This is the fundamentals of what we call ‘patient-centered care’.

 

Why do I have to be a nurse to ask you to challenge your own statements on what authority nurses have to do such "assessments" sans request from patients and their families? I am sorry I just don't buy the good BPS versus bad BPS model.

These are not my words these are the words of a nurse...

 

https://twitter.com/user/status/1019708280690667526

 

Patients in hospital have all kinds of needs. They sign consent to care. An assessement is continually done throughout the day and the night to ensure patient safety, for one and in order to personalize care according to needs. For instance, if you notice a patient wobbly on going to the bathroom, you will assess that the patient needs assistance in order to prevent fall. He/she may not have been wobbly before, so you need to investigate what is the cause, and you need to communicate concerns to the oncoming staff, and to the doctor. Nurses’ first duty is to ensure safety of the patient, to prevent complications and to provide care. In order to providing care, nurses need to assess their patient’s condition and needs through the collection of data (vital signs are an example) and ongoing monitoring. Understanding the patient’s situation connects the dots.

Patient’s lips are blue, she is short of breath and has chest pain. Yesterday at the doctor she was fine. You phone the doctor. You worry about pulmonary embolus due to presentation. You share findings to doctor, who is sending the patient for a V/Q scan, and indeed has a PE. This was a ‘sans request’ assessement.

While in hospital patients will receive services aimed at improving their condition, whatever it may be. A homeless patient may be offered a visit from the social worker to see if they would like a shelter and if one is available for them when they get discharged, providing they give consent. If the patient refuses, then they refuse, that’s all.

How many more examples do you need?

 

https://twitter.com/user/status/1019720471233925121

 

https://twitter.com/user/status/1019733439774445568

 

https://twitter.com/user/status/1019972656307818497

 

https://twitter.com/user/status/1019974881486700545

 

That's how I feel. If I go to a doctor, I want diagnostics and treatment. I don't want to talk about how I feel or cope with my illness. That's a stranger, and I don't want to do soul striptease.

I would like to see a balance - neither focussing solely on organs (which misses so much) nor on the "psyche" (which misses all the rest).

I would like to have a choice. But it seems nowadays I'm forced to talk about my feelings and family or else I get some psycho diagnosis; and if I talk I also get one. I'm starting to hate that.

 

I was reminded of a quote by Marie von Ebner-Eschenbach: "The most abominable break-in is the one into the sacred feelings of a human being."

I would so much like to tell these people to bugger off. I trusted them so often, and EVERY time I was abused in a sense. It's enough.

 

I agree with all of that and would like to add....Is it even potentially worse when people and their families are being "assessed" potentially even without their knowledge or consent. The potential for a good outcome is their but where's the transparency in such issues if things are being said about "your adjustments or coping or your families" that are downright wrong prejudice or damaging?

What happens when these things happen and are spread around other medical staff in the hospital, how does it affect ones potential treatment, does rubbish get written down in peoples notes or incorrect assumptions?

Who is adjudicating all this.

Transparency is the issue and consent cannot just be assumed because there's a massive differentiation in the power balance when someone is in hospital.

In socialised medicine in hospital there's political issues like claimed "bed blocking", denial of illness, physical illness plus claimed over experiencing of symptoms "MUS",..... "over involved families members or parents".....misunderstanding of difficult to diagnose or stigmatised illnesses...ignoring of iatrogenic harm. Denial of homecare services after discharge from hospital for the elderly and disabled etc etc

In private medicine hospital issues there are issues of insurance companies claims, hospitals over prescribing, psych meds in particular, and also iatrogenic harm denial etc etc

Its not as simple as just saying people in hospital are nice and want to care for us its much more complex than that.

How someone is "coping or adjusting" is so subjective.

 

Ok this may be repeating things I have already said but I am adding these three paragraphs upon request that were originally in a private message, it is aimed at the issue of systematic complexities not any individual ........


My point was just to highlight how nontransparent such behaviours are and doing things informally can be just as bad when its down to an individual interpretation and the belief of an individual nurse and its fairly obvious that if nurses believe they have the authority to assess patients coping style etc and even their families that it doesn't always stay informal, may be recorded and may be wrong and intrusive.

Take Bob for example and I have had friends who have had to go to hospital and if people are there who "asses for coping and adjustments to new diagnosis and family coping", what a disaster that can be. Its no good just highlighting good examples of how people are cared for when I was trying to address how the system self corrects for the potential of a disaster being imposed on a patient. It seems it doesnt, it just claims to give nurses the authority without built in protections for when things go wrong, not when things are ok. Where is the addressing of targets and bad training interference and prejudice, influencing such "assessments".

There is no way that all such "assessments" are done outside of political influence around things like "bed blocking" "Rehabilitation" and the power balance is usually with the hospital staff.

 

I do appreciate your point @large donner about the danger of having ‘coping’ assessed without the patient being aware, but I think that it needs to be appreciated that any healthcare system must monitor a patient’s progress and be vigilant for signs of deterioration, adverse effects of treatment, risk to health and patient safety etc. If the staff working in the health system do not have their eyes open and are not constantly monitoring how patients are feeling and whether they are improving or not then the health care system is broken.

The difference perhaps is down to whether the patient is asked how they are feeling/coping, and whether they would like help with an issue they identify as being a problem, versus the healthcare worker putting their own interpretation onto what they see from how the patient is behaving.

 

https://twitter.com/user/status/1020109488966250496

 

https://twitter.com/user/status/1020110955580190720

 

I think there will always be a tension between (1) the professional obligation to take actions to achieve the best outcome; and (2) deference to the patient's dominion over their own body, mind, and lived experience.

If these two imperatives aren't constantly running up against each other in practice, something is wrong. We do, in fact, rely on medical professionals to 'know better' than patients in crucial ways and accordingly we vest them with certain powers 'over' patients. I think it's important not lose sight of this.

The problem in our case is that certain elements have encouraged and propagated totally inappropriate ideas as to what constitutes proper action to fulfill imperative (1) while declaring all-out war on (2). No wonder there's such 'controversy'.

More generally speaking when it comes to chronic disease there seems to be too much of the coercive sort of 'psychosocial' intervention creeping into (1) and little fidelity to (2). It's little wonder that the doctor-patient relationship often jarringly antagonistic.

 

Job advert:
"
Locum Consultant with Special Interest in Chronic Fatigue Epson and St Helier University Hospitals - Carshalton
£76,761 - £103,490 a year - Temporary, Contract

Locum Consultant with Special interest in Chronic Fatigue Service/Myalgic Encephalomyelitis (CFS/ME)"

"The appointee will lead and further develop an established multi-disciplinary team providing diagnostic and intervention services for people with CFS/ME in South West London and Surrey using a biopsychosocial or related framework."

https://www.indeed.co.uk/viewjob?jk=f8cf0bcb374f563d&tk=1cj5s39mr9ngufvd&from=serp&vjs=3

and so it goes on....

 

Here's the vow from the code for doctors (Germany):

Well, a nice read. If only...

 

Reminds me of this:

https://twitter.com/user/status/1019274539568697345