FII (fabricated and induced illness), and the new ME/CFS guideline

Moved from the NICE Guidelines thread

Locally, we are tracking NICE NG206 for Children & Young People/adults up to age 25.
Tilly and I are chasing the tail (tale?) surrounding suspected Fii and NICE Guidelines.

Especially in respect of how one guideline interfaces with another- or not!- or appears to have contrary or contradictory advice.

https://cks.nice.org.uk/topics/chil...nt/recognition/fabricated-or-induced-illness/

Looking at the thread in NICE as to where Fii is 'suspected' leads to outside organisations operating on behalf of NICE.......
So who scrutinises them?

1. NICE
2. CKS

Clinical Knowledge Summaries
Providing primary care practitioners with a readily accessible summary of the current evidence base and practical guidance on best practice
Child maltreatment - recognition and management: When should I suspect or consider fabricated or induced illness?
Last revised in January 2019



'Developed on behalf of NICE CKS topics are developed by Clarity Informatics Ltd but commissioned and funded by NICE.
For clarification, CKS are not equivalent to NICE guidance as they have not been produced using a NICE process, nor are they signed off by NICE guidance executive.

Topics are written by an expert multidisciplinary team with experience of primary care, supported by a network of over 6000 specialist external reviewers.
The development process is accredited by NICE to ensure the highest quality.
Read more about the CKS development process Evidence-based CKS topics are developed and updated using the best available evidence.
High-quality secondary evidence from NICE accredited resources - like NICE guidance and Cochrane systematic reviews - is identified first.
Primary research and expert opinion are sought where necessary.
Designed for primary care professionals CKS topics have been designed to support healthcare professionals in primary care: GPs GP registrars nurses pharmacists healthcare librarians medical, nursing and pharmacy students. Information is presented as specific clinical questions with answers and links to supporting evidence.
Always up-to-date CKS content is continually reviewed and updated to ensure it is relevant and accurate. 65+ updates and up to 10 new topics are produced each year.'




Fii is a real issue especially with community paediatricians/Schools and Social care.

I know Nigel/Tymes TRust etc and others are helping out.
Does the following apply when the authorities get things wrong?

file:///Users/barb/Downloads/FOMI_Guidance.pdf
The False or Misleading Information Offence: Guidance for Providers
5The False or Misleading Information Offence - Introduction

1. The Care Act 2014 has put in place a new criminal offence applicable to care providers who supply, publish or otherwise make available certain types of information that is false or misleading, where that information is required to comply with a statutory or other legal obligation. The offence also applies to the ‘controlling minds’ of the organisation, where they have consented or connived in an offence committed by a care provider.

2. This guidance sets out the context for the offence and explains how the offence is applied.

3. The need for a criminal offence in response to the provision of false or misleading information was raised by the Public Inquiry into Mid Staffordshire NHS Foundation trust.“It should be a criminal offence for a director to sign a declaration of belief that the contents of a quality account are true if it contains a misstatement of fact concerning an item of prescribed information which he/she does not have reason to believe is true at the time of making the declaration.” – Report of the Mid Staffordshire Public Inquiry – February 2013

 

This file has come from your PC, not the internet, so nobody else can access it.

I think this must be the file?

https://assets.publishing.service.g...attachment_data/file/403084/FOMI_Guidance.pdf

 

From Tilly:
FII was asked for by the Government due to cot deaths Countess Mar challenged this back in 2003.

Recent research intro this has found problems and have given this information to Jo Edwards

Fiona Gullen Scott and C Long have done a lot of research on this

https://www.pdasociety.org.uk/wp-content/uploads/2020/02/A-new-approach-to-identification-of-FII.pdf

This is the most recent- a worrying extract;

'Diagnosis and terminology Fabricated or Induced Illness (FII) and Perplexing Presentations (PP) are terms used by the Royal College of Paediatrics and Child Health 'rather than 'clinical diagnoses.
FII is generally considered broader than Munchausen Syndrome by Proxy (MSbP) or the current diagnostic label, Factitious Disorder Imposed on Another (DSM-5) and does not require the intention to deceive.
‘Perplexing Presentations’ is a new term described in a recent paper by Glaser and Davis as ‘where a child is reported to have symptoms or disabilities that impact significantly on their everyday functioning and yet thorough medical evaluation has not revealed an adequate and realistic medical explanation’(Glaser & Davis, 2019).

They suggest that PP may progress to FII, and that early intervention ‘may reduce the potential for iatrogenic harm....and may reduce the need for safeguarding interventions’.
They describe‘alerting signs’, while recognising ‘While the alerting signs have been widely disseminated, they have not been tested prospectively for specificity and sensitivity’ and in reference to the proposed management of PP and FII state ‘the extent to which this can prevent harm to children, or progression to more damaging FII, remains untested systematically’.

The expectation for medical practice and guidance is that it should be evidence-based, so the lack of evidence in this case is concerning.


Tilly: 'So the question is why have NICE taken original way of listing down ( ie Fii ? and Department of Education referenced in NG206) and why now so you have to go through education, which is a huge worry as Teachers are not clinicians. So is this false and misleading information under the new laws?'

 

As far as I can see, NG 106 is "Chronic heart failure in adults: diagnosis and management".

 

Tilly does refer to NG 206 above, ie the ME/Cfs one

https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#safeguarding

Still not really following this, though I know threat of FII terrifies many parents.

 

Apologies... NG206!

 

NG206

1.7 Safeguarding Safeguarding
1.7.1 Recognise that people with ME/CFS, particularly those with severe or very severe ME/CFS, are at risk of their symptoms being confused with signs of abuse or neglect.


NICE have placed Safeguarding in the hands of those not medically qualified to assess i.e. schools, social workers etc.and under umbrella of Department for Education.
https://www.pdasociety.org.uk/wp-content/uploads/2020/02/A-new-approach-to-identification-of-FII.pdf

'Professionals are expected to look out for ‘warning signs’ that someone may be making up or exaggerating problems and report it as a safeguarding issue.
Investigations by the medical profession and/or social services are conducted.

1. Alternative explanations
   
   Those with possible neuro developmental conditions such as Austism Spectrum Disorder (ASD) or those with multi-systemic conditions such as hypermobility syndrome or Ehlers Danlos Syndrome (in either the parent or child) are more likely to be considered as candidates for investigation because the nature of these conditions triggers the ‘alerting’ or ‘warning signs’ as described on the NHS website (last updated in October 2019).'

Problem

Parents (mostly mothers of children /YP) with ME fall also within this category.
It happened to me and a friend in Suffolk.
It's happening now in Suffolk.
The RCPCH are a problem here.
The current and proposed ‘Perplexing Presentations and FII Guidance’ from RCPCH is likely to be having significant unintended consequences through miscarriages of justice and harm being caused to the disproportionately large number of families investigated.
This ladies work is driving this agenda;
Dr Danya Glaser MB BS, DCH, FRCPsych, Hon FRCPCH, is a Visiting Professor at UCL and honorary consultant child & adolescent psychiatrist at Great Ormond Street Hospital for Children, London. She is currently working on the early recognition of fabricated or induced illness.

Further extracts
https://www.pdasociety.org.uk/wp-content/uploads/2020/02/A-new-approach-to-identification-of-FII.pdf

'NICE reports a child will be taken into care in almost all cases of physical harm and around half of cases where the mother is only fabricating, not inducing, the illness of the child.

'Recently, the concept has been widened beyond the original formulation to consider a parent (almost always a mother) who is thought to be causing harm by, for example, insisting on further assessments (potentially traumatic for a child) or being excessively protective, or unnecessarily keeping a child away from school. In addition, children with ‘perplexing presentations’, where there is no clear medical explanation for symptoms seen, may be considered in need of action as it could potentially be an early stage of FII on the part of the parent.

Professionals are expected to look out for ‘warning signs’ that someone may be making up or exaggerating problems and report it as a safeguarding issue. Investigations by the medical profession and/or social services are conducted.

Recently, the concept has been widened beyond the original formulation to consider a parent (almost always a mother) who is thought to be causing harm by, for example, insisting on further assessments (potentially traumatic for a child) or being excessively protective, or unnecessarily keeping a child away from school. In addition, children with ‘perplexing presentations’, where there is no clear medical explanation for symptoms seen, may be considered in need of action as it could potentially be an early stage of FII on the part of the parent.


Process of investigation

There is no formal process defined, and therefore there is variation in practice according to circumstances and locality.

Experience shows that:
•Accusation of FII is a safeguarding issue and therefore, commonly, social services are alerted, sometimes without a suitable involvement of the medical profession.

•Paediatricians, psychologists and psychiatrists vary in their mind-set and level of expertise which can have a significant influence on outcome.

•Those with perplexing presentations are more likely to have complex difficulties that have not yet been understood than FII, yet once doubt is cast on the parent’s believability, it can become impossible to access support and further advice.

•Crucially, a parent is unable to defend themselves effectively as asking for further medical opinions or showing a good knowledge of medical matters is seen as an indication of guilt.

•In court proceedings, the prosecution’s assertion that doctors can’t provide a sufficient explanation for behaviours is (but should not necessarily be) seen as evidence that the accused is behaving untruthfully.

•Expert witnesses –clinicians –have themselves been targeted and undermined in court for giving an unpalatable (but plausible) clinical explanations.

To summarise

The current and proposed ‘Perplexing Presentations and FII Guidance’ from RCPCH is likely to be having significant unintended consequences through miscarriages of justice and harm being caused to the disproportionately large number of families investigated.

The lack of evidence for the use of warning signs to trigger investigations, which may have other explanations, is acknowledged.

 

Parents (mostly mothers of children /YP with ME) fall within this category.
It happened to me and a friend in Suffolk.
It's happening now in Suffolk.

NICE have placed Safeguarding referrals in the hands of those not medically qualified to assess i.e. schools, social workers etc and under umbrella of Department for Education.


Further extracts
https://www.pdasociety.org.uk/wp-content/uploads/2020/02/A-new-approach-to-identification-of-FII.pdf

'NICE reports a child will be taken into care in almost all cases of physical harm and around half of cases where the mother is only fabricating, not inducing, the illness of the child.



'Recently, the concept has been widened beyond the original formulation to consider a parent (almost always a mother) who is thought to be causing harm by, for example, insisting on further assessments (potentially traumatic for a child) or being excessively protective, or unnecessarily keeping a child away from school. In addition, children with ‘perplexing presentations’, where there is no clear medical explanation for symptoms seen, may be considered in need of action as it could potentially be an early stage of FII on the part of the parent.


Professionals are expected to look out for ‘warning signs’ that someone may be making up or exaggerating problems and report it as a safeguarding issue. Investigations by the medical profession and/or social services are conducted.


Recently, the concept has been widened beyond the original formulation to consider a parent (almost always a mother) who is thought to be causing harm by, for example, insisting on further assessments (potentially traumatic for a child) or being excessively protective, or unnecessarily keeping a child away from school. In addition, children with ‘perplexing presentations’, where there is no clear medical explanation for symptoms seen, may be considered in need of action as it could potentially be an early stage of FII on the part of the parent.

Professionals are expected to look out for ‘warning signs’ that someone may be making up or exaggerating problems and report it as a safeguarding issue.
Investigations by the medical profession and/or social services are conducted.

1. Alternative explanations
   
   Those with possible neuro developmental conditions such as Austism Spectrum Disorder (ASD) or those with multi-systemic conditions such as hypermobility syndrome or Ehlers Danlos Syndrome (in either the parent or child) are more likely to be considered as candidates for investigation because the nature of these conditions triggers the ‘alerting’ or ‘warning signs’ as described on the NHS website (last updated in October 2019).
   

Process of investigation

There is no formal process defined, and therefore there is variation in practice according to circumstances and locality.

Experience shows that:
•Accusation of FII is a safeguarding issue and therefore, commonly, social services are alerted, sometimes without a suitable involvement of the medical profession.

•Paediatricians, psychologists and psychiatrists vary in their mind-set and level of expertise which can have a significant influence on outcome.

•Those with perplexing presentations are more likely to have complex difficulties that havenot yet been understood than FII, yet once doubt is cast on the parent’s believability, it can become impossible to access support and further advice.

•Crucially, aparent is unable to defend themselves effectively as asking for further medical opinions orshowing a good knowledge of medical matters is seen as an indication of guilt.

•In court proceedings, the prosecution’s assertion that doctors can’t provide a sufficient explanation for behaviours is (but should not necessarily be) seen as evidence that the accused is behaving untruthfully.

•Expert witnesses –clinicians –have themselves been targeted and undermined in court for giving an unpalatable (but plausible) clinical explanations.

To summarise

The current and proposed ‘Perplexing Presentations and FII Guidance’ from RCPCH is likely to be having significant unintended consequences through miscarriages of justice and harm being caused to the disproportionately large number of families investigated.

The lack of evidence for the use of warning signs to trigger investigations, which may have other explanations, is acknowledged.

 

Thank you @Suffolkres

 

Thank you for all raising this/these issue(s).

I am not up to fully following the thread fully at present. However, given the impact ME has had on my life when acquired in my 30s when I already had an education, a career and a friendship circle, I can not but be aware how devastating in the best of circumstances ME must be to children who are yet achieve what most adults take for granted. But then add disastrous false accusations, undermining family life and almost guaranteeing medical mismanagement on top … … …

 

Thank you Peter. My son was 14 when he was finally diagnosed. 1998.
He had really been post viral since he was 4...
Good advice and careful attention to diet and energy conswrvation ie pacing helped till high school pressures, crowds noise and in effect child cattle herding organisation methods in 5he school, another virus and finally an acute pesticide exposure tipped him to SA severe in 2001.

Fii threats followed for me which I took very seriously.. and had to see me strategically back off from trying to get proper help.

As I was a Safeguarding trained education professional working with the most complex cases of vulnerable young people, having to change from what I knew was as instinctively right was terrible. I really don't know how families are expected to survive this injustice.

The situation was bad then but even worse re Fii now.. Perplexing Conditions.... perplexing to who?????!!!!!

SEND services are nationally in disarray (see ITV Report this week.) Norfolk & Suffolk Foundation Trust also in headlines re children and lives lost.

My fear is that the message for CYP in NG206 though clear simply won't get through to where it is needed. It will be overlooked overriden or disregarded.
The situation needs urgent attention.

Now through the Implementation process for NG206 we have some chance of getting the message across.

 

The hardest bit is the sense of chronic, long term enduring grief that we families have to bear seeing lost aspirations, life chances and meaningful transition to any semblance of a normal adult life.

It's painful seeing others move on with life when you are stuck in the situation at 38 of a 14 year old in terms of independence, uncertainty over social contacts and life, financial precariousness and the sense that carer's parents are aging and will not always be there for you.

The grief is doubly overwhelming when you have a fight at every point in the journey;
GP
Medical services
Social Care
Education employment or training
DWP support (son won't bother too traumatised)....
Society disbelieving in general sometimes wider family too.....

I have coped by getting stuck in and being around others who understand and do likewise- so thanks S4ME ( and all others in wonderful ME Community) for allowing me this opportunity to sound off!

 

We avoided FII as our daughter was nearly 17 when seen at Great Ormond St, but hear from so many parents on Facebook and elsewhere of the ongoing horrors.
At least this is something the APPG have looked at so whenever their report comes out, it should be covered.

The grief over lost opportunities is huge. My daughter is moderately affected. She is generally amazingly bouyant but recently said she was terrified that she would be like this indefinitely.

Bob's Mum asked me after his funeral if I still had hope. I am hopeful that the tide is slowly turning, but who knows when the disease mechanisms will be understood and treatments developed.

Like you two, and so many others, I just keep battling on where I can.

 

https://www.facebook.com/watch/live/?ref=watch_permalink&v=1006518170006844


Sunshine Support
April 20 2022 at 9:00 PM ·
We are launching the world's first ever FII AWARENESS WEEK!
FII (Fabricated or Induced Illness) is the term used to describe parents who professionals believe is 'fabricating' 'inducing' or 'exaggerating' their child's difficulties.
It is NOT a clinical diagnosis. It is different to Munchausen's Syndrome by Proxy.
Wrongful accusations of FII are on the rise.
We are raising awareness of this problem during the world's first ever 'FII AWARENESS WEEK'
A full itinerary of our FII Awareness programme and our mission statement can be found here: www.sunshine-support.org/fii
PLEASE SHARE FAR AND WIDE!

https://www.sunshine-support.org/fii-when-professionals-fabricate-the-truth
FII - When Professionals Fabricate the Truth...
Chrissa Wadlow • May 06, 2019
Professionals assume it must be mum, but who is REALLY the person fabricating the truth? Mum or the professionals?

 

How this can claim 'it might reduce the need for safeguarding interventions' (when that sounds like exactly what it is introducing) when it notes it 'lacks sensitivity and specificity'. Isn't the 'hard job' of social work being able to identify, well, the cases where terrible harm could occur whilst putting the minimum of people through a 'process' that itself causes harm, but importantly spreads social workers time too thinly?

Is it not just rank irresponsible to write suggestions like this without more than a bunch of ifs, maybes, buts and caveats strung together into an area where there merest sniff of 'might' can lead to people needing to cover their back with a referral? She cannot be that unaccountable and irresponsible she can't acknowledge that will be the direct effect of such words? 'might cause iatrogenic harm' if they don't but no discussion if the do diagnose with PP? Nonsense

In what of course is a side note if this were not fictitious fictitious illnesses being created.. cynical me always thinks that someone needs to investigate the money involved with these things too. Social care budgets are stretched 'too thin' apparently for desperate cases and yet are most of the local government budget - anyone who just from that angle wants a system that works properly would think something that muddies waters and makes it harder to know 'safe from unsafe' is costing money that is taking from kids in terrible situations.

And cynical again, I always think we should have a running total of how much - in total - these individuals [those specifically working in the FII area e.g. writing papers, conferences, running centres, writing books] are earning from whatever they do year on year (including kingdoms they might be associated with), who is funding it, and so we can see whether certain research is leading to certain changes that end up benefitting longer-run certain areas.

I highly imagine that all of this is causing huge strain on most staff who get dragged into it, but not necessarily all are worse off for it. I'd like to find out.

Something is obviously very very broken in the 'overall system' involved here as a whole, and it is always useful to see whether 'wiggle room' budget-wise is present ie something totally different to this, doesn't involve 'cost more' overall because of what is currently having to be spent on it in certain places.

 

Yes I've added in the word 'staff' but still not sure how it reads (or how to rectify - yesterday wasn't a good day noise wise).

What has been the cost so far of FII when you total up everything involved for all the cases put through this (at any level of the process)? So you've potentially also got huge numbers of precious staff and resources in key areas doing due process for 1,000s of kids because someone's pushing 'assume FII'. In staff time as well as anything else - because there are shortages of social workers etc., budgets are stretched to the max they can (social workers/care is local council budget and most of what comes in goes on that now in most areas, so there is nothing left to cut) you've got the same staff juggling more and more cases.


And I'm also assuming somewhere else there will be people who have made a career/business out of FII in funding grants, books, conferences, training courses and so on. I think it is worth tracking these amounts.