NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

Esther12 said:
Do you think that there's much chance of nurses in the UK getting decent training without their being radical changes that would lead to the removal of people like Crawley?
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I'm hoping the NICE guidelines might move things in the right direction, but it will still leave us with a long way to go no matter what.

Realistically, i don't think people like Crawley will go. Shuffled sideways eventually is probably the best we can hope for. Otherwise there would be an admission of guilt and failure. I would love that to happen, I don't think it's impossible, but I can't see it.

I agree with @Esther12, until there is a radical change of opinion about ME in the NHS, then I wouldn't want any more treatment, especially by nurses.

I say especially by nurses because the less training and experience people have in a given field, the more rigidly they will follow the rules and guidelines, even when they can clearly see they are doing harm. If the rules say to do it, then that must be okay.

As is there is no personal responsibility as long as rules and guidelines are followed. They are more important than patients wellbeing and we know the current guidelines and approach hurt people.
 
adambeyoncelowe said:
There are some excellent nurses, such as Caroline Kingdon, who's very popular with patients.

It's all down to training, ultimately. We've seen the FINE trial training, so it's clear where that went wrong.
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Yes, I've only ever heard good things about her. Sadly, like the good ME consultants we can't clone her.

Even good nurses have to toe the line in the clinics they work for, though. That or go elsewhere.

Until something fundamentally changes, then more of the same just puts more of us in harms way.
 
Esther12 said:
Do you think that there's much chance of nurses in the UK getting decent training without their being radical changes that would lead to the removal of people like Crawley?
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I think that largely depends on a change to the NICE guidelines. Nurses are trained to be specialist nurses for people with long term conditions like Parkinsons' disease and MS. If the NICE guidelines were clear, and the nurses were trained and working under the supervision of a consultant physician or rheumatologist or neurologist they need never even hear of the nonsense spouted by Crawley and the psychs. There would be no psychologists involved anywhere near such medical clinics. The CBT clinics could all close down. (I can dream).
 
Trish said:
The CBT clinics could all close down. (I can dream).
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Yeah, I think that we'd need those sorts of massive changes though. Having seen how Britain works, that seems like just a lovely dream. I think that to get in that direction there we'd first make it very clear that the current services are a terrible use of money.

adambeyoncelowe said:
There are some excellent nurses, such as Caroline Kingdon, who's very popular with patients.

It's all down to training, ultimately. We've seen the FINE trial training, so it's clear where that went wrong.
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I didn't mean to sound like I was saying all nurses were terrible I'm sure that there are lots of good and helpful individuals.

But training is important, as are the views of their colleagues, the claims in textbooks, Cochrane,etc. It's the whole system. A system that rewards and promotes someone like Crawley is not one that we can have any confidence in.
 
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adambeyoncelowe said:
There are some excellent nurses, such as Caroline Kingdon, who's very popular with patients.

It's all down to training, ultimately. We've seen the FINE trial training, so it's clear where that went wrong.
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Caroline trained Dio ( Dionysios Giotas) to assist her with house/bedbound patients and , then later, they both trained more nurses to do the Biobank medical assessments in Norwich - I will try to find the article.

They all do the appointments in exactly the same order, for the Study that I am on. But these nurses also understand that the bedbound patients will not be able (or should not even be attempting) to do some of the tests.




ETA link with the nursing training by Caroline Kingdon
 
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Invisible Woman said:
It literally could be a cut and paste mistake.....who knows?
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Maybe but seems a big departure, and to C & P they would have had to delete the ever present CFS. I wonder if it’s to cover themselves/be sensible with the coronavirus guidance or if it’s convenient to move ME there where it can still be approached as an FND
 
Cinders66 said:
Maybe but seems a big departure, and to C & P they would have had to delete the ever present CFS. I wonder if it’s to cover themselves/be sensible with the coronavirus guidance or if it’s convenient to move ME there where it can still be approached as an FND
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Or it could just be that whoever updates the website uses that term over CFS, or considers it best to use the most commonly used (by patients) term?
 
adambeyoncelowe said:
Or it could just be that whoever updates the website uses that term over CFS, or considers it best to use the most commonly used (by patients) term?
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I don’t recall ever seeing medical stuff use that term alone, if an individual has that view in officialdom let’s hope we see more. I wonder if it also indicates a move, with the NICE guidelines to see more recognition at last of ME- PEM etc as distinguished from the wider CFS umbrella.
 
"People with neurological conditions have the lowest health-related quality of life of any long term condition"​

This refers to the Neurological study that found patients with ME/CFS (as they called it) had the lowest quality of life of any neurological illnesses.

So again, downplaying, but steps in the right direction.
 
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