Integrated care policy recommendations for complex multisystem long term conditions and long COVID, 2024, Banerjee et al

Integrated care policy recommendations for complex multisystem long term conditions and long COVID
https://www.nature.com/articles/s41598-024-64060-1

The importance of integrated care for complex, multiple long term conditions was acknowledged before the COVID pandemic but remained a challenge. The pandemic and consequent development of Long COVID required rapid adaptation of health services to address the population’s needs, requiring service redesigns including integrated care. This Delphi consensus study was conducted in the UK and found similar integrated care priorities for Long COVID and complex, multiple long term conditions, provided by 480 patients and health care providers, with an 80% consensus rate. The resultant recommendations were based on more than 1400 responses from survey participants and were supported by patients, health care professionals, and by patient charities. Participants identified the need to allocate resources to: support integrated care, provide access to care and treatments that work, provide diagnostic procedures that support the personalization of treatment in an integrated care environment, and enable structural consultation between primary and specialist care settings including physical and mental health care. Based on the findings we propose a model for delivering integrated care by a multidisciplinary team to people with complex multisystem conditions. These recommendations can inform improvements to integrated care for complex, multiple long term conditions and Long COVID at international level.

 

I don't really understand the point of doing this. All it does is basically say "do your job" but is fully aspirational. Pointless busywork fluff.

 

And then there's this incredible lead nugget:

You can't focus on LC while keeping ME/CFS out of scope. This is asinine and ignorant of the most basic facts about both.

 

The responses from one of the questionnaires: https://www.york.ac.uk/media/health...arch/STIMULATE-ICP Delphi Responses Table.pdf.

Again we see a disconnect between clinicians and patients. Clinicians' input is all about biopsychosocial and holistic this and that, full of empty marketing buzzwords, while patients emphasize meaningful help, research, pacing, no GET or psychological/lifestyle treatment. It's as wide as the demands of an aristocracy and an oppressed population, but they're supposed to find middle ground. Basically the patients are focused on what they need, the clinicians on what they want.

Clearly ME/CFS is well within scope, there are many comments about PEM/PESE, GET and pacing. All the comments about GET are extremely negative. By contrast comments about pacing are all positive, so exactly 100% the opposite of the PACE model and false claims made for decades, and the biopsychosocial model used by LC clinics from day 1. There are mentions of this and following NICE guidelines, but of course the LC guideline recommends GET, it's only the ME/CFS that advises against, so very clearly in scope. There isn't a single comment in there that supports the notion of keeping ME/CFS out of scope.

All but one comment about CBT are extremely negative, the only neutral one says "CBT support". Whatever that means.

And as usual, although patients and clinicians talk about biopsychosocial elements, they mean completely different things to each group. The patients basically mean: biopsychosocial, but without most of the psychosocial. By psychological they mean as support for the consequences of being ill, not as a cause, and by social they explicitly mean help, support, direct, meaningful, not the clownish art therapy and therapeutic recreation fluff, or worse yet the whole "enabling the sick role", or whatever. Pretty much all the comments about psychological support are aspirational and express the need that they be better, that they are currently completely inadequate.

Pretty much all comments about biopsychosocial are "it should be", but of course the CBT+GET deconditioning / false illness beliefs is the biopsychosocial model, and it's completely demolished by the patients. So it's more of a question of confusion over what it even means. A lot is lost in translation here, the same terms mean different things, and of course that's on purpose.

Many of the comments are useless, about 1/3 are 1-3 words long, so the questions were clearly inadequate, poorly framed or phrased.