UK Long COVID Service Evaluation and Forward Planning, 2023, Bath, Swindon and Wiltshire

SNT Gatchaman

SNT Gatchaman

Senior Member (Voting Rights)
Staff member
YouTube - Long COVID Service Evaluation and Forward Planning: 28th September, 2023



I attended this webinar last night my time. It's posted already on YouTube. 70 minutes in three main sections. This was hosted by a company providing a digital patient reported outcomes measures platform (DPROM).

The first was a good presentation on the statistics from a statistician/epidemiologist at the University of Leeds. The main message is that there is a high symptom and disability burden and that this is lasting.

Generally patients had been completely healthy prior to Covid. Fatigue was the main symptom, followed by cognitive, pain, sleep disturbance, PEM, anxiety/depression and palpitations. Cough and loss of smell and taste were the least reported ongoing symptoms.

There was an associated major reduction in quality of life, employment and financial status. This presentation's data will be formally reported in the next couple of months.

The second presentation was from two physiotherapists co-ordinating the LC service in Bath, Swindon and Wiltshire. There was a recognition that they are learning as they go with this "entirely new disease".

There were some major problems demonstrated, which probably relate to the aforementioned lasting disability statistics. Ie the disease and management model is poorly founded and the service is not helping, merely observing the natural recovery in some. There are unquestionable red flags. I don't know whether @PhysiosforME can help.

They have a virtual multi-disciplinary team with input from doctors: respiratory and cardiology consultants. They have also drafted in neurologists and FND specialists to "enhance their service offer".

They offer a personalised plan to "recover well" and "live well", focusing on "breathing well", "reconditioning", "living well with fatigue".

They have structured a 4-tiered rehab pathway. It is emphasised that this is predicated on the patient's "strong sense of self-efficacy" and "a willingness to change".

Tier 1 offers simple reassurance that "the symptoms are real" and "we believe them". The offer includes "talking therapies" and "singing and breathing".

Tier 4 is for the people with "multiple bio-psycho-social factors impacting engagement/outcome".

The third presentation was about plans for the app, with home use directly by patients.

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There were over 320 in the audience and throughout presentation 2 I observed multiple comments pushing back on the framing, eg referencing this week's Iwasaki Nature paper.
 
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On every tier the emphasis is on 'willingness to change' and 'willingness to engage'. So it's set up with patient blaming attitudes from the clinicians from the start. How patronising and poisonous.

And that double edged sword 'hope'. Great for those who recover and attribute their recovery to positive thinking, appalling for those who get sicker.

I feel sad for the people with LC fed this nonsense.
 
Solstice said:
Was gonna post a comment but that only boosts visibility of their shit.
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Although to be fair to the host company, they aren't the problem. The symptom tracking and data gathering platform is probably technically pretty good. I expect that it could be helpful for patients. But the tech was being used by one of the LC services and it's that service's medical model that is highly problematic.
 
SNT Gatchaman said:
Although to be fair to the host company, they aren't the problem. The symptom tracking and data gathering platform is probably technically pretty good. I expect that it could be helpful for patients. But the tech was being used by one of the LC services and it's that service's medical model that is highly problematic.
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That's fair enough yeah. A lot of tech can cause misery when used by the wrong people.
 
I'm assuming this is the service involved:
https://bsw.icb.nhs.uk/long-covid/
Bath and North East Somerset, Swindon, Wiltshire
BSW Long Covid Rehabilitation Assessment Clinic

There are links to the Wiltshire Long Covid Rehabilitation Guide.
https://wiltshirehealthandcare.nhs....BSW-Long-Covid-rehabilitation-Guide-100.0.pdf
As far as I can see, there is no mention of ME/CFS or even CFS.

Currently research and evidence suggests long covid causes a disruption to the immune and autonomic nervous system causing the body to be in a state of high alert, otherwise known as fight or flight response.
This high alert state underpins many of the symptoms listed below. Often symptoms are linked: meaning an increase in one symptom can lead to an increase in another symptom. If you are fatigued your concentration will be affected, this in turn will affect your memory. These lapses of memory can increase your anxiety, which increases your fatigue. As you can see this goes round in a cycle. Therefore, an improvement in one area should lead to an improvement in another.
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Look for patterns of too much activity followed by too much rest and see if you can make small adjustments to balance activity and restorative moments throughout the day and week.

When you are ready, you can gradually increase the amount of activity you are doing but be careful not to build up too quickly. As a rule, it is suggested an increase of about 10%.

Once you have made an increase, you will need to keep the levels stable for a week or two before increasing again.
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It seems likely to me that, going forward, virtually no one in this region will be diagnosed with ME/CFS. Instead, they will be diagnosed with Long Covid, probably with 'low self-efficacy' due to the person's inability to recover.

They will then be subjected to something that is identical to what had recently been offered as GET - incremental increases in activity with some accommodation of symptoms and a large helping of patient-blaming.

I hope those people who are providing feedback on the UK ME/CFS Delivery Plan note that this is what is happening. Yes, some theoretical concessions have been won for people with ME/CFS, but it looks as though that will count for little as the business as usual model is applied to people with a new label.

This service will definitely be causing harm.

@PhysiosforME
 
This approach from the health system is exactly the one used for decades.

Virtually inevitable that we would be correct in predicting back in 2020, that anyone a victim of post acute infection from this pandemic would be subjected to the very same congealed gruel left at out on the counter at room temperature for day after and microwaved up then force fed to us.

If we gag and spew, if we sicken and die?

It’s never the administrators. Never the gruel. Always the lack of will to recover.
 
Hutan said:
I'm assuming this is the service involved:
https://bsw.icb.nhs.uk/long-covid/
Bath and North East Somerset, Swindon, Wiltshire
BSW Long Covid Rehabilitation Assessment Clinic

There are links to the Wiltshire Long Covid Rehabilitation Guide.
https://wiltshirehealthandcare.nhs....BSW-Long-Covid-rehabilitation-Guide-100.0.pdf
As far as I can see, there is no mention of ME/CFS or even CFS.





It seems likely to me that, going forward, virtually no one in this region will be diagnosed with ME/CFS. Instead, they will be diagnosed with Long Covid, probably with 'low self-efficacy' due to the person's inability to recover.

They will then be subjected to something that is identical to what had recently been offered as GET - incremental increases in activity with some accommodation of symptoms and a large helping of patient-blaming.

I hope those people who are providing feedback on the UK ME/CFS Delivery Plan note that this is what is happening. Yes, some theoretical concessions have been won for people with ME/CFS, but it looks as though that will count for little as the business as usual model is applied to people with a new label.

This service will definitely be causing harm.

@PhysiosforME
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Is this just for this one health authority developed by or for them or is it for any authority in the NHS to have if they so desire?

I can’t read or see properly. Perhaps I don’t have sufficient will to supply my eye.

Anyway, on the first link it says at bottom of page patients rate at home treatment five stars.

This is interesting. But I can imagine how they could quite easily get a patient to say that is great for me, now I don’t have to come into the office to be insulted. I stay home with my kids and you can deliver insults to me online. Like everyone else does these days. Modern medicine being flexible and adaptive to the changing world. Bit slow off the mark but better late than never I guess.
:rolleyes:


EDIT: CORRECTION!
I summoned up my bravery and motivation and clicked on the link re- five star reviews, and these do not relate to the long COVID service, instead the acute COVID monitoring programme via Oximeters. A biomedical device. That as far as I know doesn’t measure willpower or willingness.
 
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Hutan said:
I'm assuming this is the service involved:
https://bsw.icb.nhs.uk/long-covid/
Bath and North East Somerset, Swindon, Wiltshire
BSW Long Covid Rehabilitation Assessment Clinic

There are links to the Wiltshire Long Covid Rehabilitation Guide.
https://wiltshirehealthandcare.nhs....BSW-Long-Covid-rehabilitation-Guide-100.0.pdf
As far as I can see, there is no mention of ME/CFS or even CFS.





It seems likely to me that, going forward, virtually no one in this region will be diagnosed with ME/CFS. Instead, they will be diagnosed with Long Covid, probably with 'low self-efficacy' due to the person's inability to recover.

They will then be subjected to something that is identical to what had recently been offered as GET - incremental increases in activity with some accommodation of symptoms and a large helping of patient-blaming.

I hope those people who are providing feedback on the UK ME/CFS Delivery Plan note that this is what is happening. Yes, some theoretical concessions have been won for people with ME/CFS, but it looks as though that will count for little as the business as usual model is applied to people with a new label.

This service will definitely be causing harm.

@PhysiosforME
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Will have a look at this - thank you for tagging us
 
Hutan said:
It seems likely to me that, going forward, virtually no one in this region will be diagnosed with ME/CFS.
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Seems clear to me that simply disappearing the whole ME diagnosis by replacing with a 'functional' diagnosis is now their primary means to avoid accountability and reform, and keep their empires intact.

It just proves – as if any more proof were required – that they are utterly shameless and ruthless, and don't give flying fig about patient welfare.
 
Sean said:
It just proves – as if any more proof were required – that they are utterly shameless and ruthless, and don't give flying fig about patient welfare.
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I'm not sure that it does prove that harm to patients is intended. I think many health professionals involved in this truly believe that they are helping these inadequate people with their low self-efficacy to become better versions of themselves and recover. The fact that providing this assistance aligns with various secondary gains (possibly including income, prestige, sense of superiority) must surely be a motivating factor though.

It suggests that we need to work on reducing some of the secondary gains.
 
Hutan said:
I'm not sure that it does prove that harm to patients is intended.
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I don't think they intend harm, as such, just that it takes a distant second place to their self-interest.

The fact that providing this assistance aligns with various secondary gains (possibly including income, prestige, sense of superiority) must surely be a motivating factor though.
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One of the most powerful of all.

It suggests that we need to work on reducing some of the secondary gains.
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Agreed.
 
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