General news about Fabricated and Induced Illness syndrome (FFI)

Merged thread
Cerebra has become increasingly concerned over recent years with an apparent rise in reports from families with disabled children which suggest that a significant number have been accused of creating or exaggerating their child’s difficulties. Instances of this kind are referred to as ‘Fabricated or Induced Illness’ (FII) and sometimes as ‘perplexing presentations’ (PP). You can find more information about FII and PP here.

We want to understand how many parent carers of disabled children have experienced allegations of this kind, when and how these happened and what the consequences were for the families concerned. So, we are carrying out a survey to gather more information about the extent of accusations of FII and PP and would like as many families with disabled children as possible to take part in it.

The survey will be anonymised and the responses will be analysed by our Legal Entitlements and Problem-solving (LEaP) Project Research Team under the supervision of Professor Luke Clements, Cerebra Professor of Social Justice at the School of Law, the University of Leeds.

https://cerebra.org.uk/legal-rights...eds-fii-fabricated-or-induced-illness-survey/

Cerebra is a UK charity supporting children and young people with brain injuries/conditions. While the details suggests that this survey is open to parents and carers of children with any disability I'm yet to confirm that.

 

When I saw the title, I was nervous, but this looks like it might actually be good?

 

Open to all.

 

@Amw66, do you have time to post this on any parebt FBs you are in. If not I'll do it tomorrow

 

Merged thread
https://twitter.com/user/status/1724851237194023080

 

https://twitter.com/user/status/1724868660097896829

 

I didn't post it because I'm waiting to see the outcome of the appeal, but recently (last week?) a jury in the US awarded compensation of something like $250M by a hospital network to a family of someone who was subjected to a false accusation of Munchausen's, leading to someone (a parent, I think) being put in jail and the patient held in a hospital, subjected to psychological therapy and ultimately dying. Not sure of the details of the death, but I think it was something missed because of the decision that it was psychosomatic (edit: it was suicide).

The only redeeming feature of the US healthcare system: tort. You can be liable if you screw up. Doesn't mean you will, but you may, and if that judgment is held up, it will make US healthcare institutions think very hard about passing such poor judgment. This is the only way this will change. Even bad reporting and public shaming won't do it. Even in healthcare, it means nothing. There has to be consequences.

The sad truth is that people actually rarely learn from mistakes, they learn from the consequences of their mistakes. When there are no consequences, the only thing to learn is that those mistakes don't matter. And generally speaking, such mistakes are defended far more than they are condemned, if they ever are by more than a handful of people.

 

Earlier in the week I happened to be reviewing some cases with a colleague who is a recently qualified specialist. In radiology we have the luxury to be able to easily review cases that are all electronically stored and easily accessible. They were worried about a few questionable findings. We often agonise over the significance of borderline findings and worry about missing things. When they happen, while occasionally consequential, often such misses or incidental findings are minor and inconsequential for the patient. Indeed in many cases they are better off remaining unnoticed/unrecorded as ultimately "false-positives" that can cause patient distress and scarce resource overuse.

I said to my colleague that the big picture here is this: in the real world we occasionally make errors and sometimes that causes the patient a problem, but often not and typically our work is satisfactory and helpful. But, to put that all in much clearer perspective — although currently obscured by being too-big-to-fail — there is a large portion of medicine, perhaps even a quarter of all medical practice, whose output systematically causes harm at all contact points. At the "lower" end by not doing anything useful (effective treatment opportunity loss) but also actively harming and injuring patients, families and societies (eg as here with these erroneous diagnoses of FII, or GET/psychosomatising in ME etc).

 

This might be the Maya Kowalski case - famous via the Netflix documentary "Take Care of Maya" (CONTENT WARNING).

https://www.nytimes.com/2023/11/10/us/take-care-of-maya-trial-damages-kowalski.html

Spoiler: Content warning: medical abuse and suicide

An attorney for the Kowalskis, Jennifer Anderson, said that Maya’s parents had been following orders from a doctor who had previously treated her pain syndrome, and the complaint said that Ms. Kowalski had experienced “Acute Stress Reaction and Grief reaction” after being accused of child abuse and having her daughter taken away.

“In short, the actions of the Defendants and their agents drove both parents, but especially Beata as she was also accused of abusing her beloved daughter, inexorably towards the most extreme of human behavior,” the complaint read.

Mr. Kowalski was eventually allowed to have visitations.

In a Dependency Court hearing on Jan. 6, 2017, Beata Kowalski saw her daughter in person for the first time since Maya was admitted to All Children’s Hospital, an attorney for the Kowalskis said. Maya was using a wheelchair “and in worse shape” than when she entered the hospital three months before.

Less than 48 hours later, Ms. Kowalski took her own life, the complaint said.

 

The Kowalski case is US-based so these comments may need a separate thread (or this thread re-titled beyond the UK).

The court decision and expert commentary is seen here: https://www.courttv.com/title/maya-kowalski-reacts-to-verdicts/ It's 13 minutes and harrowing to see this family destroyed by medical failure. At 10:18 the expert legal commentary is in agreement and includes —

"I think it was a major message to hospitals, to medical professionals, that unfortunately the reality is millions or even billions of dollars are teetering on people's egos - on health professionals' egos. This could all have been avoided at different points [...] and because the hospital didn't have checks and balances [...] this was deserved. I think they will fail at appeal. [...] The jury definitely got it right."

"You know the hospital is trying to wrap this up in this mandatory reporter protection [...] they seem to be overlooking [...] how can following a doctor's instructions and prescription [...] be abuse?" (Referring to the treatment with ketamine.)

"That's the conclusion Dr Smith made, she said 'I don't care what this treating physician says, I've decided this is abuse' and that got the whole ball rolling. [...] Every single penny was deserved [...] I'm surprised they didn't get more."

"These were some of the worst witnesses I've ever seen in a civil case. Righteous doctors that were unwilling to admit they did anything wrong."

Further background at https://www.thecut.com/article/child-abuse-munchausen-syndrome-by-proxy.html

 

Perhaps due to the team who drafted the recent guidelines ....

 

I've started a thread on the guideline itself here, UK: Royal College of Paediatrics and Child Health: Perplexing Presentations (PP)/Fabricated or Induced Illness (FII) in children

Not sure I would agree that the guideline "actively suggests" ME/CFS (and other conditions) may be alerting signs - there is no specific mention of it in there. However there is plenty of talk of MUS and 'functional' issues, which obviously we know many consider to be ME/CFS to be an example of.

 

‘It’s destroyed us’: Parents of children with long Covid accused of making it up

"Parents of children with long Covid claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and, in some instances, court cases and the threat of the child’s removal from the home.

Doctors struggle to diagnose the condition due to its complex range of symptoms and often treat it as a psychological rather than physical disease, with parents telling i they have been accused of child abuse and of fabricating the illness as a result.

Experts have compared the situation to the way professionals have previously dismissed ME (myalgic encephalomyelitis), an almost identical disease in terms of the variety of debilitating symptoms and lack of universal diagnosis or treatment. ME is a complex neurological disorder that causes symptoms such as chronic pain and exhaustion and, in very severe cases, can be fatal."

https://inews.co.uk/news/parents-children-long-covid-accused-making-up-3034629

 

Rare to see this acknowledgement, but it would be more accurate to say that because of the aforementioned discrimination, in severe cases, patients are abandoned and left to die slowly of starvation even though they don't have to, that it's a choice made by health care professionals. But that's very hard to admit, lots of liability at stake. Still, it's something to see, it only took decades.

Edit: oh, and suicides, out of despair at seeing how much hostility there is to do something meaningful, how even after decades nothing has really changed, of course

 

And the knock on if you explore the council budgets and how much of it has to go on valid but also ‘contested’ processes in Uk vs how much they have overall. Some are going bust because they can’t meet legal obligations. Knock on effect of more money on this meaning less for adult social care and impact on nhs and less for other council services.

so yes potentially huge ricochet even beyond those close to situation- for whom I can’t imagine how life wrecking it could be. The writing of this to target people with certain illnesses is gobsmackingly unjustifiable and if so feels like the most unforgivable incitement of the worst discrimination. The potential cost of this and impact therefore in others also says s lot about those who have chosen to do it ?

 

Just because I don’t know much about this but how is the court system and judges funded in these countries?

I know that fir a number of years there has been talk of issues with delays and things to do with judges pay and legal aid snd I’m sure I’m missing more in the Uk

I don’t know in the Uk which ‘courts’ it is for these cases and whether it is ‘normal’judges? I do no know it involves social workers etc

and by these case I mean the original one people would have to fight - and there seems to a lot of ‘that’ and system before they even get to court and u it s that a point where there is any independent legal judgment?

I also don’t know if anyone can even sue or do a court case when that’s wrongly happened in the Uk like this? And who or ehich court and judges etc they can go through?