UK - NHS England online tool and clinics for long Covid.

Moved post

Meanwhile coming up; http://www.nhshealthatwork.co.uk/

A must in March NHS Health at Work (who NICE stated in December that they have no jurisdiction over info advice on ME and CFS!)


Our Annual Conference: Wednesday 10 March - Register Now!
As a result of the continuing Covid-19 restrictions we have taken the decision to hold our Annual Conference as a ‘live’ virtual Zoom event, rather than the traditional face-to-face conference format.
The event will run from 09.00 – 16.15 on Wednesday 10 March 2021. Whilst it will be disappointing for us not to manage our usual get-together, I am delighted to be able to advise that for the first time ever the conference will be available to every single member of the team who work in OH Services registered as Full or Associate Members of the Network.

We also appreciate that whilst work demands may limit the numbers able to join us ‘live’ on the day, all the speakers’ presentations will be recorded and held on our Members-only area of the website for colleagues to be able to watch at their leisure any time over the following 6 months. We have a great line up of speakers confirmed including:
Dame Carol Black (Expert Adviser on Health and Work)
Dr Anne de Bono (President of the Faculty of Occupational Medicine)
Dr Olivia Donnelly (Consultant Clinical Psychologist)
Professor Em Wilkinson-Brice (Deputy Chief People Officer, NHSE&I)
NHS Occupational Health leaders presenting some thought-provoking case studies

To register your place please e-mail admin@nhshealthatwork.co.uk

 

This would be called extremely lossy compression in information theory, it loses 90%+ of the information. Think of a JPEG at 50% quality, applied 10x successively, and the resulting image is the reference image. It is impossible to do proper science while simply removing almost all relevant information straight at the initial input point. This is completely dysfunctional, a complex list of symptoms all reduced to "tiredness", then discharged.

There is genuinely no other profession where this would be acceptable. None. Real scientists never discard data and most professionals do the same, hoard them just in case, information is very cheap to store anyway. Here the data are available and simply thrown away at the first point of contact. This is a major reason why medicine is failing here, any process would fail if it was comparatively counterproductive. Not a single business in the world could operate this way, bankruptcy would be very quick.

https://twitter.com/user/status/1355253222043168772

 

Long haulers are slowly getting acquainted with the freight train trolley being sent their way:

https://twitter.com/user/status/1356348984256851971


One twist of the trolley problem that never seems to get considered: what if someone actually wants to put the trolley in the past of most harm? What if the goal is to hit as many people as possible out of misguided belief that the trolley helps?

 

Apparently, motivational interviewing is talking to people nicely, that's all.
https://www.rcn.org.uk/clinical-topics/supporting-behaviour-change/motivational-interviewing

And

What is the evidence that MI works?
Clinical trials have shown that patients exposed to MI (talking to people nicely) versus treatment as usual (presumably talking to people nastily) are more likely to enter, stay in and complete treatment, participate in follow-up visits, decrease alcohol and illicit drug use and quit smoking.

Could you make it up?

 

Alcohol intake, drug use and smoking all involve a behavioural component which, surprise, means changing behaviour can help.

Being in extreme pain is not a choice, neither is being unable to breath or having dysautonomia! A complete non sequitur.

I am also dubious about any clinical trial that uses treatment as usual as a control. In the case of ME that means nothing at all and if there is a usual treatment have patients already tried it and found it did not work?

 

I can think of a few people that do, regularly.

 

https://twitter.com/user/status/1362812478888042502


One might even say that's the whole point.

It's me, I'm one saying that.

 

Same junk, different package:

One remarkable thing developing over the years has been this bizarre insistence over "highly trained" therapists doing "personalized programs" and then of course a simple app, basically a dynamic pamphlet, produces the exact same outcomes, outcomes having everything to do with the passage of time. Right now both things are true and that's just perfect.

When your expertise can be replaced by a simple generic app, that expertise is a sham. No real expertise has ever been replaced this way. It says the app involves some follow-up and advice from OTs and others but it's still all just as generic as horoscopes. This is simply taking advantage of the fact that most will recover with time. Any serious effort would acknowledge this, but a con is all about confidence.

 

https://twitter.com/user/status/1368651470929879044


Curious if anyone bothered checking the app? It appears to be standard MUS stuff.

 

So much fuss about the Long Covid clinics in the UK. It's an international sensation, people are raving about why this isn't done in other countries.

Meanwhile what goes in the those clinics:

https://twitter.com/user/status/1369688905210028035


Not much in the way of people responding with a more positive experience, despite dozens of comments. It's all standard MUS fluff, as predicted.

 

Absolute shambolic system-wide failure. How anyone can look at this and be proud of themselves is beyond my understanding.

https://twitter.com/user/status/1389719634186805250


https://twitter.com/user/status/1389710434765316098

 

What in a way I do not understand is why these people are expecting anything at all. As far as we know there is nothing to do but let yourself improve if you are going to.

The first mentioned macs and vascular and heart research - but macs probably does not exist and research is something different from what can be done at present.

The second talks of multiple pathologies - but what exactly are those one wonders? Long Covid does not have pathologies.

The third seems sensible to have cancelled physio - but why did she get involved in physio in the first place? She says she has extensive testing scheduled - but what one wonders?

I agree that the clinics look like the usual BPS garbage but I also think that a lot of people seem to be expecting some magic solution and don't want to be told there isn't one. It is not that surprising that BPS services thrive if people are not able to accept that time may be the best medicine.

 

I don't disagree with this but in addition to patients just not being told the truth (i.e. there's nothing to be done), the big problem is how does one survive if one cannot work? That's where the real desperation comes in. It's not a medical problem at this point but a political economy one. While I'm all for agitating for more medical research, people need benefits NOW. Perhaps groups like Body Politic need to focus more of their attention on that rather than simply focusing on the limitations of medicine?

 

Apart from the fact that a lot of expectations have been raised by the talk of long Covid services (people will obviously expect tests or treatment if they've been referred to a specialist clinic), it's probably not only the patients who're behind this.

Employers, schools, and colleges are not used to being told that time is the best medicine. They expect actions. Even when people are signed off by doctors, they're often still contacted weekly and asked what progress has been made and when they'll be back. All patients can do is try to comply with the expectations, however absurd they sound to anyone familiar with post-viral illness.

Even once jobs have been lost due to lengthy sick leaves, it's all-nigh impossible to claim sickness benefits without medical evidence. Welfare advisers tell people to get the most solid evidence they can, which again drives them to try and obtain it.

Patients are stuffed whichever way they turn, because society just doesn't allow for open-ended convalescence any more.

 

Just to echo what Kitty is saying here.

The most valuable thing I could have had at the time I got sick, after a flu-like virus, 18 years ago, was a specialist who understood that a long convalescence was vital if I was ever going to get well. They would have had to vehemently insist upon it though. First they would have had to convince me, and then my employer. At that stage I was very impatient to be getting on with life and couldn't believe that a mere 'bug' could get in my way. I hope that some Long Covid sufferers are fortunate enough to get this advice, even though it may run counter to their own instincts, and the current trends in society.

 

I think you are completely correct, but so is Kitty. People with ME have been caught in this catch-22 for years. No one will believe you are ill unless a doctor says so but honest doctors, the ones who do not sell snake oil for their own benefit, say there is nothing they can do. Try getting PIP when the last doctor you saw was twenty years ago.

Patients are sick but want to get back to their old life. Doctors treat ill health so sick people expect them to know more about the subject than they do so they will be able to give them advice to get better. (Which in itself proves that adopting the sick role is not a driving force for longcovid)

If these longcovid people were told that no one yet knows why they are still ill but their ill health was accepted and they were given help with benefits, care and so on the same as anyone with their symptoms but a more accepted illness would get then they would quite happy to give everything time. When you have no income, are struggling to feed your family and pay the rent, time is a luxury.

(I might be being picky but many people did not understand what a virus was before the pandemic so using the word pathology wrongly when they are trying to say parts of the body aren't working is a tad unfair )

 

Doctors could help by being realistic about recovery times for post-viral illness. When a friend was diagnosed with breast cancer, she was told that she'd be off work for a year. It might be as long as 18 months if she needed follow-up surgery, but a year was probably the best indication to give her employer at present. (It was 14 months in the end.)

Anyone who's been ill for more than three months with post-viral symptoms and isn't progressing could be told the same thing. I don't think doctors can sign fit notes for more than 12 weeks at a time, but if they gave patients a letter for their employer or the DWP emphasising the heavy symptom burden and saying that the expectation was up to 12 months, things would be a lot clearer.

Some employers would choose not to continue the patient's contract, and for that reason some patients would probably choose not to tell their employers, but at least they're not being left in the dark themselves. People feel under enormous pressure to make progress, and understanding that it's going to be an extended illness removes much of that. Knowing not to try and sustain themselves in the short term by borrowing money on the assumption that they'll be earning again in a few weeks would also be very helpful.

Some people will recover in less than a year, of course, but that's just a bonus all round.

 

Moved post

I thought we had a thread for the UK's Long Covid centres but I can't find it, so posting this here, which is evidence that they are working pretty much as we could have predicted.

https://twitter.com/user/status/1397869615527641089