General news about Fabricated and Induced Illness syndrome (FFI)

bobbler said:
That sounds high enough it's systematic,

and I'll be brave and suggest I'd suspect most of the other half might have been made because someone thought someone might make a complaint

is there some sort of belief, or actually truth in the system of complaints, that if they do it first then the complaint won't hold as much weight/risk?




So where did their figures come from? Is this another 'accidental' (not) copying of a fake / deliberately miscalculated stat then cited as much as they can until it becomes a truism - just like the FND '10%' one?

Will someone finally call out 'research' that is 'propaganda' when it either has no reserch, has no quality of methodology, or [deliberately] contains errors or misleads in the abstract vs what is in the results etc.

And are then used to undermine actual factual statistics.

"pathologises disagreement" is a polite term for something that I do think starts to need its own criminal code to be honest in future. Isn't it just about power? and someone having created a situation where it can be misappropriated?
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the pathetic response:

An Royal College of Paediatrics and Child Health spokesman said that when its guidance was last updated in 2021 it was conducted “via a multidisciplinary expert working group” .........The college is also “actively exploring options to ensure that the planned update to the guidance sufficiently captures a multidisciplinary approach”.
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Are they thick?
 
Moved discussion

Sean said:
I never said ME is FND,​

What about CFS? Is that FND?

Just so we are clear.
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and just to add belt and braces to it, this from Table 1 of the RCPCH ‘Fabricated or Induced Illness by Carers: A practical guide for paediatricians’ – last published in 2009. Updated February 2021 - is wrong then?

Medically Unexplained Symptoms (MUS) Definition
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The child’s symptoms, of which the child complains and which are genuinely experienced, are not fully explained by any known pathology but with likely underlying factors in the child (usually of a psychosocial nature), and the parents acknowledge this to be the case. The health professionals and parents work collaboratively to achieve evidence-based therapeutic work in the best interests of the child or young person.
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MUS can also be described as ‘functional disorders’ and are abnormal bodily sensations which cause pain and disability by affecting the normal functioning of the body. Synonyms Non-organic symptoms, Functional illness, Psychosomatic symptoms
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Amw66 said:
Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly
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Yes I remember that one well. The South West Paediatric Society and Crawley was to be the speaker. Didn't they apologize after a deluge of 'vexatious' complaints? . I noticed today that parents raising vexatious complaints to doctors is now an FII 'alerting sign' and that any one of the alerting signs triggers PP investigation. It's positively kafkaesque now.

Edit OMG - I've just another look at it.
 
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Amw66 said:
Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly
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@Maat
one of mine
forums.phoenixrising.me

DISCUSSION: Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

http://www.swpc.org.uk/Exeter2017SWPCProgramme.pdf South West Paediatric Club A Day with the MUPPETs (Medically Unexplained Physical, Psychological Symptoms) 15.30 Victor Neale Memorial Lecture: CFS/ME, what we know and research updates. Professor Esther Crawley, Bristol Children's Hospital...
forums.phoenixrising.me forums.phoenixrising.me
 
Maat said:
Yes I remember that one well. The South West Paediatric Society and Crawley was to be the speaker. Didn't they apologize after a deluge of 'vexatious' complaints? . I noticed today that parents raising vexatious complaints to doctors is now an FII 'alerting sign' and that any one of the alerting signs triggers PP investigation. It's positively kafkaesque now.

Edit OMG - I've just another look at it.
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Another look at the MUPPETS or the FII pathway? The thing is FII is set up like a protection for the medical profession and a gatekeeping exercise. There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child. Those that believe that all doctors would do no harm and would be reasonable get hoodwinked into going for the program to show their innocence.
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Tilly said:
Another look at the MUPPETS or the FII pathway? The thing is FII is set up like a protection for the medical profession and a gatekeeping exercise. There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child. Those that believe that all doctors would do no harm and would be reasonable get hoodwinked into going for the program to show their innocence.
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Thanks for that @Tilly

I don't want to derail this thread, and these posts should probably be removed to a more appropriate thread.

So would only comment that, if supported by evidence,

There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child.
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I would argue that it negates any resemblance to informed consent from the parents or assent from the child and therefore goes against the GMC Guideline 1999 on the question of consent, all the way through to today's guideline.

It would be coercion and little more than what happens in criminal law, where a criminal enters into plea bargain, without any access to a hearing. It is disgusting!

It no doubt operates under the guise of 'in collaboration with' in the records.

It could also be argued that any subsequent research results based on such participants would be tainted. After all, if they have a legitimate reason to query the safety of the cyp in the first place, that should be prioritised over yet more research.
 
Maat said:
Thanks for that @Tilly

I don't want to derail this thread, and these posts should probably be removed to a more appropriate thread.

So would only comment that, if supported by evidence,


I would argue that it negates any resemblance to informed consent from the parents or assent from the child and therefore goes against the GMC Guideline 1999 on the question of consent, all the way through to today's guideline.

It would be coercion and little more than what happens in criminal law, where a criminal enters into plea bargain, without any access to a hearing. It is disgusting!

It no doubt operates under the guise of 'in collaboration with' in the records.

It could also be argued that any subsequent research results based on such participants would be tainted. After all, if they have a legitimate reason to query the safety of the cyp in the first place, that should be prioritised over yet more research.
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I am very guilty of derailing as everything intertwines and your arguments are solid and sound they just don't work for many reasons. Happy to discuss further and show why it does not work on a different thread, suffice to say that there is no collection of data or oversight for a reason.
 
Tilly said:
Yep, Government and all the rest
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mmm, I'll give this some more thought @Tilly

In the complaint I've been drafting concerning the Final Delivery Plan, under the cyp section, I deferred detailed complaint to those with personal experience and in depth knowledge of ongoing and existing problems in this area and that remains the case.

I'm assuming this would have been vociferously discussed during the Task and Finish Group which accounts for the fact it has been referred to the Law Commission. It would have also been raised during replies to the public consultation.

I limited my complaint in the section of cyp to the history and treatment of ME CFS CFS/ME and ME/CFS impacting on cyp and their families.

I have now included what I discovered during my research updating myself on guidelines in this area during the last 5 years. Of course, that only covers the situation up to the doors of the Court.

I'm making the complaint a public document once submitted, so I can't include anything beyond that and what's been disclosed in public media reporting.

I expect to receive an inadequate response to my complaint to the DHSC, in which case I'm hoping that an MP will refer it to the PHSO with a view to them investigating the entirety of the complaint against parliament, government departments, including the NHS. Whether they will or not is another hurdle.

I'm also not sure whether the PHSO has the power to look behind the Courts as Parliament and Courts are separate independent functions of the state. But they can definitely do something else. I'm at least 2 months away from the doors of the PHSO from when I submit the complaint.

I'll double check my thinking on a possible strategy to deal with this incomplete section in the complaint over the course of the next few weeks, and I'll get back to you, probably in a private message.
 
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