Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID, 2020, Kingstone/Chew-Graham/et al

[Dolphin]

Free full text:
https://bjgpopen.org/content/early/2020/10/12/bjgpopen20X101143

Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID
Tom Kingstone, Anna K Taylor, Catherine A O'Donnell, Helen Atherton, David N Blane and Carolyn A Chew-Graham
BJGP Open 13 October 2020; bjgpopen20X101143. DOI: https://doi.org/10.3399/bjgpopen20X101143

Abstract
Background An unknown proportion of people who had an apparently mild COVID-19 infection continue to suffer with persistent symptoms, including chest pain, shortness of breath, muscle and joint pains, headaches, cognitive impairment (‘brain fog’), and fatigue. Post-acute COVID-19 (‘long-COVID’) seems to be a multisystem disease, sometimes occurring after a mild acute illness; people struggling with these persistent symptoms refer to themselves as ‘long haulers’.

Aim To explore experiences of people with persisting symptoms following COVID-19 infection, and their views on primary care support received.

Design & setting Qualitative methodology, with semi-structured interviews to explore perspectives of people with persisting symptoms following suspected or confirmed COVID-19 infection. Participants were recruited via social media between July–August 2020.

Method Interviews were conducted by telephone or video call, digitally recorded, and transcribed with consent. Thematic analysis was conducted applying constant comparison techniques. People with experience of persisting symptoms contributed to study design and data analysis.

Results This article reports analysis of 24 interviews. The main themes include: the ‘hard and heavy work’ of enduring and managing symptoms and accessing care; living with uncertainty, helplessness and fear, particularly over whether recovery is possible; the importance of finding the 'right' GP (understanding, empathy, and support needed); and recovery and rehabilitation: what would help?

Conclusion This study will raise awareness among primary care professionals, and commissioners, of long-COVID and the range of symptoms people are experiencing. Patients require their GP to believe their symptoms and to demonstrate empathy and understanding. Ongoing support by primary care professionals during recovery and rehabilitation is crucial.

• Primary care
• primary healthcare
• Covid-19
• long-COVID
• persistent symptoms
• qualitative research
• severe acute respiratory syndrome coronavirus 2
• headache
• chest pain
• fatigue
• general practice
• cognitive impairment

How this fits in
It is now well recognised that a proportion of people who had an apparently mild COVID-19 infection continue to suffer with persisting and cyclical symptoms, including pain, palpitations, breathlessness, cognitive impairment, and fatigue. This is the first qualitative study in the UK to explore the perspectives of people experiencing persisting symptoms following COVID-19 infection. Participants describe the hard work of experiencing, understanding, and managing their symptoms, and the range of sources of support and help they have sought. They describe the impact on their sense of identity, and emphasise the importance of GPs believing their symptoms, and demonstrating empathy and understanding.

 

[Dolphin]

I thought this was interesting given that Chew-Graham was associated with graded activity-oriented interventions in the past:

Comparisons are emerging with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: people with symptoms struggling to make their disability visible to healthcare professionals, and to access the care and support they feel they need.10 As a consequence of this, people have been advised to use graded activity as a means of managing their symptoms,33 but then report setbacks in their symptoms. National Institute for Health and Care Excellence (NICE) has cautioned against graded activity.28 Most participants reported that ‘pacing’ was a helpful management strategy, particularly during the recovery phase. This has been echoed by individual long-COVID ‘activists’,4,34 with a call for practical guidance for GPs to help people suffering from persisting symptoms. Such guidance is gradually being published, and a number of participants in this study reported finding some documents and recommendations helpful.35,36

 

[rvallee]

The lack of introspection is amazing. Had it not been for the context of the pandemic, nearly all of those patients would have fallen into the black of hole BPS/MUS championed by the likes of Chew-Graham. The patients are excoriating this paradigm in painful detail, basically giving it a failing grade as being worse than nothing.

Because this is exactly where they currently fall. In the space that BPS built. This here is not the absence of a plan, it is the BPS plan. And Chew-Graham here details the complete failure of this paradigm without seeing any connection to the fact that this is the paradigm she has helped build, that this is in fact a massive denunciation of the very work she has done. Without any introspection whatsoever. Remarkable.

Had those patients fallen into their nightmarish trap without the Covid context, people like Chew-Graham would have boasted of the efficacy of this paradigm, how the BPS paradigm is so powerful at helping them. Exact same substance, entirely different framing. No ability to see the cognitive dissonance.

I see no discussion of treatments offered, or the actual data. It seems mostly to revolve around exercise and "treating anxiety". Would have been interesting. I wonder why this does not feature, since it was part of the semi-structured questions.

I mean:

‘I tend to speak to different GPs every time. There was one GP who just thought it was all anxiety ... she said, ”There’s nothing wrong with your lungs. This is all anxiety. You must treat your anxiety. There’s nothing wrong with you. How are you going to manage the pandemic if you don't treat your anxiety?“ That was really upsetting because I knew I was short of breath ... I just cried and also, it didn't help because, at that stage, it wasn't known about the ongoing symptoms and my husband wasn't massively supportive at that time. When I called the GP and she said, ”There’s nothing wrong with you”, and then I told my husband what she said, that made everything even worse. I just felt very, very alone with no one to support me or talk to me ... I really did feel very, very alone and isolated at that point.’ (P18, female, 40 years)

This is literally the BPS model Chew-Graham has been promoting along with her ideological peers. Here it is being criticized for being nightmarish nonsense. Absolutely no recognition of this simple fact by the authors.

Incredible what people stuck in an ideological bubble can convince themselves of. They just keep proving themselves wrong and still they never budge from their pre-existing beliefs.

 

[dave30th]

This is literally the BPS model Chew-Graham has been promoting along with her ideological peers. Here it is being criticized for being nightmarish nonsense. Absolutely no recognition of this simple fact by the authors.

Exactly. The same with the Royal Society of Medicine seminar. She disavowed her previous approach implicitly but won't cop to it.

 

[Andy]

Trial By Error: Professor Chew-Graham’s Apparent Shift in Position on GET/CBT

Now she has published a major qualitative study about the experiences of so-called “long-haulers”—patients who had presumed or confirmed acute Covid-19 and subsequently developed persistent symptoms. Some of these symptoms appear to be caused by specific organ damage. Others—profound fatigue, head-spinning, cognitive challenges—are often non-specific and harder or impossible at this point to attribute to identified pathophysiological dysfunctions. In other words, these symptoms could easily fall into the MUS category and/or lead to diagnoses of CFS/ME (or ME, or ME/CFS).

Professor Chew-Graham recently described the results from this study during an online webinar on long-Covid organized by the Royal Society of Medicine. As I noted on Virology Blog, she came across as sincere and genuinely concerned about what she’d heard from 24 patients. She strongly supported pacing—in contrast to fellow webinar panel member Alastair Miller, a Liverpool infectious disease expert who hailed the purported evidence base for CBT and GET. He failed to mention that the National Institute for Health and Care Excellence issued a warning months ago against assuming GET was indicated for long-Covid.

https://www.virology.ws/2020/10/21/trial-by-error-professor-chew-grahams-apparent-shift-in-position/

 

[chrisb]

As you may have guessed I'm not very good on bible studies, but isn't there something about "more joy in heaven over one sinner who repents..."? It just needs one more step.

 

[Woolie]

I just saw the documentary The Family, about an adoption and child mistreatment scandal in Australia during the 60s and 70s. At the end of the film the Australian Prime Minister was seen issuing a formal apology to all those whose lives had been destroyed by the adoption policies and practices of the time. Parents and children.

People in the audience - obviously those how had been separated from their babies or from their birth mothers - were weeping. It was clear how important it was to them for somebody to acknowledge their pain and suffering and say the words "I'm sorry".

I wondered whether it would ever happen for PwMEs. And then realised, probably not.