...understanding patient and practitioner perspectives of multidisciplinary treatment for people with [PPS]. A focused ethnography 2026 Lewis et al

Andy

Andy

Senior Member (Voting rights)
Full title: “If I don’t trust them, I shut down”: understanding patient and practitioner perspectives of multidisciplinary treatment for people with persistent physical symptoms. A focused ethnography

Abstract​

Purpose​

Despite the high prevalence of persistent physical symptoms (PPS), guidance for rehabilitation services treating people with these symptoms is limited. This study aimed to understand multidisciplinary interventions designed to improve activity and participation within specialist PPS services

Materials and methods​

A focused ethnography was conducted, including observations, informal conversations and interviews with healthcare professionals and patients, alongside documentary analysis of healthcare records. This was carried out at three specialist PPS services across the UK. Participants included 17 people with PPS and 25 healthcare professionals.

Results​

Three themes were developed focused on key rationales and experiences of therapy: Reconceptualising activity as a safe possibility; Healthcare professionals showing up with authenticity and curiosity; and Empowering people in their rehabilitation. Collectively, they highlight the multiple ways in which both engaging with healthcare professionals and increasing activity may feel unsafe to people with PPS, the importance of building trusting relationships to overcome these challenges, and the need to attend to dynamics of control within rehabilitation.

Conclusions​

Building and maintaining trusting therapeutic relationships, that foster shared understandings, and feelings of safety and control when increasing activity, is central in specialist rehabilitation for people with persistent physical symptoms.

IMPLICATIONS FOR REHABILITATION​

  • Healthcare professionals should attend to the multiple ways in which increased activity may feel unsafe for people with persistent physical symptoms.
  • Developing a trusting therapeutic relationship is particularly important when working with people with persistent physical symptoms, due to previous negative healthcare experiences, and can be built through a focus on authenticity and curiosity.
  • Building shared understandings of symptoms and taking time to make shared decisions may help people feel empowered and facilitate their engagement.

Open access
 
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"Persistent physical symptoms (PPS) are burdensome somatic symptoms, such as pain, fatigue and weakness, that have lasted for several months or more. It is an umbrella term, encompassing symptoms that occur in the context of organic disease and undiagnosed conditions, as well as mental disorders and functional somatic disorders (such as functional neurological disorder (FND) and fibromyalgia) [Citation1]. Symptoms are considered to arise from a complex interplay of physical, psychological and social factors [Citation2]. PPS are very common, accounting for up to 50% of secondary care attendances [Citation3], with an annual NHS cost of £3bn [Citation4]. A fifth of people with PPS experience severe and chronic symptoms [Citation5], with levels of disability and caregiver burden comparable to those with multiple sclerosis or schizophrenia [Citation6,Citation7]."
 
Looks like this is research for a doctorate by the lead author, Hilary Lewis who is an OT and psychotherapist:
https://medicinehealth.leeds.ac.uk/medicine/staff/2365/hilary-lewis

I haven't read the article, but the abstract seems to have a key point missing: does all this therapising and trying to get sick people to be more active actually do any good? Or harm?

Research interests​

I am interested in multidisciplinary treatment of persistent physical symptoms (PPS), particularly rehabilitation for those people with moderate-severe difficulties who have not been helped by health care services. My current interests are around how underdeveloped parts of treatment (such as occupational therapy and physiotherapy) can be delivered effectively alongside more established approaches such as psychological therapy. My NIHR Doctoral fellowship aims to improve services for people with moderate-to-severe PPS through standardising and refining current specialist rehabilitative approaches that focus upon improving activity and participation.

Additionally, I am interested in the role of occupational therapy in mental health services and with people with multiple long-term conditions.
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"Reconceptualising activity as a safe possibility" is so wrong for pwME

It's all so rehab rehab rehab, BACME style confidence that they are actually useful.
 
It doesn’t look like they actually stop and really consider if what they are doing is beneficial.

If we just out of curiosity imagine that the interventions are harmful or just ineffective, this is a manual on how to case harm and waste resources. So they better make sure they are right..
 
The paper said:
Despite the high prevalence of persistent physical symptoms (PPS), guidance for rehabilitation services treating people with these symptoms is limited
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That's definitely false. In fact, there is a comical over-abundance of guidance, it's just that all of it is wrong. But you could build a decently-sized library with the amount of guidance available. It could all be reduced to a single pamphlet, but that's not how it's evaluated. There is likely more guidance than there are professionals working on this, because everyone makes up their own guidance or versions of it, usually plural.
Reconceptualising activity as a safe possibility; Healthcare professionals showing up with authenticity and curiosity; and Empowering people in their rehabilitation
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Marketing consultant slop. This stuff is even worse nonsense than data centers in space.
Developing a trusting therapeutic relationship is particularly important when working with people with persistent physical symptoms, due to previous negative healthcare experiences, and can be built through a focus on authenticity and curiosity.
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The negative health care experience is literally this. What oblivious, self-serving nonsense.
 
For those with severe difficulties, multidisciplinary treatment is recommended, to include psychological therapies, physiotherapy and occupational therapy [8–11]. Evidence for the effectiveness of multidisciplinary treatment is in its infancy
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That is a very interesting admission. It seems to have been in its infancy for many decades, with no convincing evidence produced in all of that time.
and detailed descriptions of its components are rare, although early cohort studies of multidisciplinary treatment for FND show promising results
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But what evidence is there that ME/CFS is related to FND, or indeed any form of what these authors consider to be "PPS"? Not to mention that the largest & most salient trial of cognitive-behavioural therapy for pseudoseizure, the CODES trial, was a null result on the primary outcome measure (seizure frequency, the only one that really matters for pseudoseizure). Should programmes involving CBT for FND not really have been disbanded after such a convincing demonstration of uselessness?

Underpinning their behavioural model - indeed, the entire overbroad concept of "PPS" - is the assumption that there is nothing really wrong with patients with any problem that is presently unexplained save for illness beliefs, inactivity & psychological factors. The only difference is that they've just learned to be more manipulative than their colleagues who just get frustrated with patients and tell them that it's all in their heads.

Given the preponderance of authors from Leeds I think it likely that one of the inpatient sites was NICPM.

These people are not "specialists", and what is described is not care. Their psychobehavioural clinics are operating absent an evidence base, as they admit. And many ME/CFS patients' experiences of such clinics are very negative indeed, as the large-scale surveys involving thousands of respondents (the Oxford-Brookes one commissioned for NICE, and the 2019 ME Action one) have shown. On that basis alone they should not be funded.
 
What is the justification for giving advice to ME/CFS patients which goes against the NICE guideline?

How can patients and HCPs form trusting relationships if the HCPs misrepresent the efficacy and risks of the management strategies offered?

Or does evidence only matter if it’s convenient?
 
Evidence for the effectiveness of multidisciplinary treatment is in its infancy.​

Yet there you are, very clearly assuming it is effective despite no evidence that it is, and instead just trying to make out that the problem is with tweaking the sales pitch to overcome entirely justified and hard earned reluctance and concern in patients about this unproven 'treatment' and its extensive failed history.

This ain't a marketing problem. The product is a lemon. Ever occurred to you that is why patients are voting with their feet and staying away?

:rolleyes:
 
Trish said:
Looks like this is research for a doctorate by the lead author, Hilary Lewis who is an OT and psychotherapist:
https://medicinehealth.leeds.ac.uk/medicine/staff/2365/hilary-lewis

I haven't read the article, but the abstract seems to have a key point missing: does all this therapising and trying to get sick people to be more active actually do any good? Or harm?


"Reconceptualising activity as a safe possibility" is so wrong for pwME

It's all so rehab rehab rehab, BACME style confidence that they are actually useful.
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That’s it really isn’t it, if you don’t want to care about the consequences of what you sell or deliver as a job to make money on those you do it to

Then you shouldn’t be asking for trust unless you are deceitful too

It’s callous and pre-meditated

And to write ‘advice’ on how those whose ‘thing they offer’ deceived to harm the same people last time to trick the same injured targeted pawns again with a new ‘con’ that ‘they care’ in the sense of what the word professional in a health context should mean: bring a responsible and accountable person to the impact of it for those their profession claims to help

Well sorry but it looks like a pattern not just of abuse but a manual on how to trick those they should be apologising to into ‘trusting them that they’ve changed , whilst not actually having to change’ to get to do that harm they don’t care they inflicted for a second time - with the incredible implications to any human being of feeling you’ve then been deliberately done over again and someone went to such lengths to tell people how to make those who should be wary fall for it again and how would they feel about human nature and themselves and the system that someone lets people write and do things like this with such intention to gain trust not due etc?

Depending on whether their entire focus is checking what they do has a good and any bad impacts on those targeted by it and being honest,robust and updating then It’s not mental health it’s mental harm if that’s what it does so society needs to stop allowing that misleading use of a term to go unchecked and those basic questions to go unanswered or assumed just because of a title of a job, dept etc. If it isn’t accurate or the right thing ie is ‘the wrong thing’ then delivered effectively is actually even emotes than ineffectively and to hide it so people’s consent is skirted in order to steal trust when it’s not due then it’s abuse of psychological techniques on people not any kind of psychology to help and it’s about time the professions of those in it who do care and do claim it’s funded in the name of good for end years (not politics or ‘deal with’) need to start making this distinction
 
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