Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

Jonathan Edwards said:
I found this hard to take on board but the 'system' is now very different from what it was a few decades ago. Everything is now run for the sake of fulfilling targets and rules about equal opportunities, such that any discrimination in quality has lost any significance.
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I just can't get my head around how there's this black hole where patients are being left to die. If the NHS isn't about saving patients' lives, what is the point of it?

Jonathan Edwards said:
Ilora Finlay is sympathetic but she has not engaged very actively recently. It has been said that she has been preoccupied with the assisted dying legislation. She may also have to keep hands off a bit as a supposedly neutral member of the NICE committee.
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I don't see any conflict with neutrality in pointing out this lethal gap in provision and trying to get it addressed, but again, I don't understand how the system works. But I suspect that the neutrality consideration wouldn't stop the functional medicine people if the shoe were on the other foot. It would be great to be able to involve someone with influence to do the right, life-saving thing for patients.

Jonathan Edwards said:
But what would they contribute?
Sasha was talking about campaigning, which is what is needed.
Why would a palliative care physician spend time campaigning when all their colleagues are trying as hard as they can to look the other way.
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I was talking about campaigning but I'm also talking about pulling any lever available. People seem to be looking the other way right, left and centre. Whoever campaigns is going to have to deal with that, and the more voices joining the campaign, the better.

After Covid hit so many health professionals with Long Covid, I'd have thought it would have hit some who might now be back at work and in potentially useful positions who might be interested in this.

Who should any campaign be directed to? Who has the power to solve the problem? Is it NICE? Somebody else?

(Sorry, I seem to ranting a bit, but better out than in.)
 
My personal complaint to Cochrane (which I've just begun to draft) includes my entire medical history, which includes a diagnosis of 'anorexia' due to 'self-neglect' at the age of 62. Apparently, when the DWP stop all your benefits because you're too ill to respond and you begin the process of dying from starvation, it's also your fault. o_O Then of course, I had a psyche intervention while hospitalised for malnutrition right in the middle of pandemic in 2020; why? The only reason I can think of was because I had a CFS/ME diagnosis back in 2011, and now I was malnourished. I did not know at the time that I was the older version of Maeve Boothby O'Neill, in Bath.

I suspect I'm going to need PTSD counselling after this is all finished.

ETA: Now I'm really going to take a tempory leave of absence or I'm never going to get through Christmas. Have a good one and all. :emoji_wine_glass:
 
Maat said:
That's when the legal system has to step in and decide.
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But what can the legal system do if government sets up a system with no overall quality control? A coroner can say that the government must come up with a policy for providing care. The government comes up with a policy that says that they have decided that the people providing care are responsible for providing care, not them - to have a free market. When things go wrong the legal system does not try to find out exactly why because that isn't a legal matter. It just goes round and round.
 
Jonathan Edwards said:
I have no idea. There was a time when someone was in charge. Now it is just purchasers and providers playing whatever games they like.
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But if there was guidance from NICE, doesn't that at least put patients and the carers trying to advocate for them in hospital in a far stronger position? I know that NICE offers guidance rather than lays down the law but my understanding was that it nevertheless carries considerable authority and that any clinician going against NICE in the face of a starving patient would be fearful of the consequences.

I haven't followed the Maeve Boothby O'Neill situation but what about that Coroner's Regulation 28 Report? IIRC the hospital involved produced new guidance for that hospital only that hasn't impressed our forum - so does that present an opportunity to interest NICE in producing something better? Can we produce something better in conjunction with others such as Helen Baxter and present it as a solution that ought to be adopted?

Jonathan Edwards said:
Sasha was wanting someone to persuade the powers that be to get a service for sever ME/CFS set up.
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I probably was, but in this case I think that what is needed is guidance that should be followed at every hospital.
 
Jonathan Edwards said:
The responses to the coroner's section 28 report sounded as if NICE might finally engage but I am not sure quite how they are going to solve this problem.
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Have you seen them? They are not yet publicly available on the Government website, but I wonder if they might give any clue as to whether there were any serious ongoing efforts around this problem.
Jonathan Edwards said:
I have come into contact with one or two gastroenterologists with an interest in feeding problems. Sadly, I get the impression they work on the basis of a sort of hybrid of vague 'functional gut-brain axis' concepts and equally dubious mechanical or neurological theories about 'gastroparesis' or 'dysbiosis' or whatever. These days people sitting on appointments committees like candidates to have something to sell. The atmosphere is very different from the academic department I trained in.
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Yup. And I consulted a neurogastroenterologist when I thought I might need enteral feeding who had all kinds of ideas about SIBO and so forth. So much nonsense.
Sasha said:
Can't they develop a guideline specifically on this problem? On an emergency basis?
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The problem is, I think, that there is almost no evidence that would meet NICE's requirements for inclusion in a guideline. BSG would definitely be able to help but whether they would be willing to become involved I've no idea.
 
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Nightsong said:
The problem is, I think, that there is almost no evidence that would meet NICE's requirements for inclusion in a guideline.
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NICE's hierarchy of evidence doesn't rule out non-RCT evidence. For instance:

NICE said:
'Colloquial evidence' can complement the scientific evidence or provide missing information on context (see figure 3.2). It may come from expert testimony (see section 3.5.1), from members of the advisory committees, or from stakeholder comments (see section 3.5.2). It includes evidence about values (including political judgement), practical considerations (resources, professional experience or expertise and habits or traditions) and the interests of specific groups (views of lobbyists and pressure groups).
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Plenty of scope there! And there's presumably no evidence for starving patients to death, so it's maybe a low bar...


BSG would definitely be able to help but whether they would be willing to become involved I've no idea.
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Interesting (British Society of Gastroenterologists).
 
Jonathan Edwards said:
When things go wrong the legal system does not try to find out exactly why because that isn't a legal matter. It just goes round and round.
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In clinical negligence, it is the job of the civil courts to find it. First, there must be a harm done.

So a claim must first establish harm, and then establish causation, mitigation and finally blame. Then there is the human rights aspect and the UN Convention of the rights of persons with disabilities.

There are many ways, it's just a matter of finding the pathway, once evidence gathering has reached optimum point. Helen Baxter's series of talks adds to this, as does your work and that of others.

This is common law and so any case law created in England can be used in other common law jurisdictions which include for example Australia and Canada.

As Ghandi allegedly said be the change you want to see in the world. My GP is listening to me and titrating up from a low point my new blood pressure medication, due to my intolerance to medications. That's a good start.
 
@Jonathan Edwards, what about engaging with Dr Helmsley and improving on the new guidelines that were produced for his hospital to avoid a repetition of what happened to Maeve? He would surely be highly motivated to contribute to top-quality guidelines for his own hospital and to be part of getting those new guidelines taken up across the NHS.
 
Sasha said:
I can't believe what a Kafkaesque mess this all is.
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I can't believe that it just continues on and on after all that has been exposed about it. That the guilty are able to keep perpetuating the same shitty abuse and lies with a straight face, and go on getting rewarded for it.

Nobody with the power to stop it can still claim lack of available knowledge of the whole shitty saga. It is now all laid out for the world to see.
 
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