“They seemed to be like cogs working in different directions”: a longitudinal qualitative study on Long COVID healthcare services in [UK], 2024, Fang+

“They seemed to be like cogs working in different directions”: a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens
Fang, Chao; Baz, Sarah Akhtar; Sheard, Laura; Carpentieri, J. D.

The COVID-19 pandemic has presented significant challenges to the already over-stretched healthcare system in the United Kingdom (UK). These challenges are particularly pronounced for people living with the novel condition of Long COVID (LC) as they often face persistent and fluctuating symptoms, encountering prolonged uncertainty when seeking medical support. Despite a growing understanding of the healthcare challenges associated with LC, existing qualitative studies have predominantly focused on individual experiences rather than examining the structural aspects of healthcare.

A longitudinal qualitative study with 80 participants and 12 healthcare practitioners was conducted in the UK to explore the healthcare experiences of those with LC. In total, 178 interviews (with attrition) were collected across two rounds, from November 2021 to March 2022, and from June to October 2022. Embracing a person-centred framework that recognises and nurtures interconnected individual, relational, and existential needs, we investigated healthcare experiences related to LC across primary, secondary, and specialist integrated care.

Using this perspective, we identified three overarching themes. Theme 1 addresses the persistent hurdle of accessing primary care as the initial point of contact for LC healthcare; Theme 2 underscores the complexity of navigating secondary care; and Theme 3 encapsulates the distinctive challenges of developing LC integrated care. These themes are interlinked, as people with LC often had to navigate or struggle between the various systems, with practitioners seeking to collaborate across the breadth of their professional responsibilities. From a person-centred approach, we were able to identify the needs of those affected by lasting LC symptoms and comprehend how health services intricately influence these needs.

The focus on healthcare systems also captures the nuanced impact that continuing healthcare struggles can have on people’s identity. As such, our findings provide evidence to inform a more effective and sustainable delivery of person-centred care for people with LC across various healthcare settings and over time.

Link | PDF (BMC Health Services Research) [Open Access]

 

I reckon so.

As usual, it misses the point that what patients really need is help with all the crap that happens when the rug gets pulled from under your feet, and most of it isn't medical.

 

TL;DR: Health care systems are unable to meet this demand, and are unwilling to change, but patients have no alternatives so they still try but fail at getting any substantial help, while nothing has changed since day 1.

Patients and MDs all speak of it, it's heavily used throughout, but have a completely different meaning of what holistic care means. To patients it simply means being managed professionally without having to self-manage everything and do all the damn work for nothing, a "one-stop-shop" kind of thing. For MDs it means... who the hell even knows at this point but obviously it means biopsychosocial. There is hardly any discussion that this is an old problem, no discussion that chronic illness has been known and failed this way for decades. It actually describes this as a unique problem, showing just how unwilling the system is to change.

Or, well, there is discussion of it being an old problem, with a solution of just doing the same old failure that led to this, either oblivious or indifferent that it's the same thing with the same intent and purpose:

Honestly this reads like interviews about a large company that just went bankrupt after years of essentially being a scam, and everyone knew things were completely FUBAR and couldn't believe it continued for this long. Except it's not going bankrupt, the plan instead seems to be to simply keep on failing, if there is even anything that can be construed as a 'plan' here. Because health care is too big to fail, even in areas where it delivers nothing but failure.

 

Personally I prefer the image of interlocking gears and cogs. No matter which one you try to turn, it's always connected to another gear or cog that only goes in the other direction and blocks any movement. But it's impossible to change how the machinery is built, this is how the gears and cogs have to be, so it's basically a perpetual motionlessness machine.

I'm sorry, an award-winning evidence-based patient-centered supercalifragilisticexpialidocious holistic perpetual motionlessness machine. I mean there was a Long Covid conference last week and they basically celebrated how awesome and smart and effective they are doing, while literally describing this, which in another paper has been described as "almost designed to fail".

It's the damn disconnect with reality that ruins everything. They think they're doing amazing while doing worse than nothing but they can't see it, are completely oblivious to how badly they are doing. Even when they're told directly.