FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What..., 2022, Gullon-Scott and Long

Full title: FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services?

Abstract

Fabricated or induced illness (FII) and perplexing presentations (PPs) are the terms used by the Royal College of Paediatrics and Child Health (RCPCH) in the UK. FII is presented as if synonymous with Munchausen syndrome by proxy, a rare presentation which is now known in Diagnostic and Statistical Manual of Mental Disorders, 5th Edition as factitious disorder imposed on another (FDIoA). However, FII is not a diagnosis, and the definition is far broader than FDIoA. RCPCH admit that there is a limited evidence base for the prevalence, specificity or sensitivity of FII and the associated ‘alerting signs’, and yet local authorities across the UK have Child Protection Policies developed directly from the RCPCH guidelines.

An increasing number of families of children with neurodevelopmental presentations (such as autism), or presentations of complex or less well-known conditions such as Ehlers–Danlos syndrome, are finding themselves being investigated for FII by Social Services, and consequently labelled as potential ‘perpetrators’ of child abuse, on the basis of FII guidelines. The present article discusses the issues relating to FII and PP, how current guidelines are creating implicit and explicit bias against certain kinds of families and the implications for Social Services.

Open access, https://academic.oup.com/bjsw/advance-article/doi/10.1093/bjsw/bcac037/6543955

 

A quoted experience, bolding and line breaks added,

"I am a former teacher and parent of 3 children with special educational needs and health difficulties. It took years to reach the diagnoses for my eldest – joint Hypermobility syndrome (HMS), Ehlers Danlos syndrome (EDS), Postural Orthostatic Tachycardia syndrome (POTS), Attention Deficit Hyperactivity Disorder (ADHD), Autism traits causing severe sensory processing difficulties, Dyslexia and visual stress/Irlens syndrome. My middle son struggled with the transition to high school, due to ADHD and Dyslexia, resulting in school refusal. The real problems of FII began when my youngest developed similar symptoms to his older brother, and he was subsequently diagnosed with joint HMS. The Head Teacher disputed these medical diagnoses and refused to meet me to discuss a support plan. In a telephone conversation, the Head thought I was ‘projecting illness from my older children to my youngest because of my need for my children to have health and SEN difficulties, and obviously gained something from it’.

Two months later she reported her concerns to the local authority. Initially, the Social Worker was supportive and agreed my son needed a support plan to facilitate his return to school. No concerns of FII were reported by my children’s consultants’ and General Practitioner, but then one community Paediatrician said she was suspicious of me as my middle child was not recovering from Chronic Fatigue Syndrome (CFS). A Child Protection Conference was held for my 2 youngest children. I was accused of FII. The safeguarding doctor said I knew too much about health, due to my claims of being a Nurse, even though he eventually admitted he had mixed me up with someone else. I was also accused of isolating my children from society to home educate them. Each school reported my children were “Fine in school” but my youngest son stated, ‘I am frightened at school, get hurt by children who are mean to me. I feel poorly, my tummy, my legs, and my head hurts. I get told off if I am late and I never want to go back’.

There was a further year of FII investigations where it became evident that few professionals understood the comorbidity of my children’s conditions. All could have been explained if I had been given the chance to explain, and if the medical notes had actually been read … I was finally cleared of the allegations of FII. I am mystified as there was no accountability for the school. Social Workers chose to believe the word of a Head Teacher and failed to adequately investigate our case."

 

From the paper, my bolding,

"Concluding comments

FDIoA exists. This is not in dispute. It is a formal diagnosis of a psychiatric condition in the parent, recognised in DSM-5 (American Psychiatric Association, 2013). There are genuine cases of parents or carers who intentionally fabricate or induce illness in their child for their own gain. FDIoA has a literature and evidence base, and the prevalence is rare. FDIoA excludes from diagnosis parents where an alternative explanation for their behaviour—such as anxiety, other mental health presentations or autism—is apparent. FDIoA requires deception. FDIoA focuses on the reason for the behaviour, not the end result.

In contrast, FII is not a diagnosis, lacks clarity, has no current evidence base, and has not been tested for sensitivity and specificity. The guidelines around FII and PP have broadened the concept of abusive behaviour to scoop up anything that leads to a parent presenting frequently to professionals with concerns about their child and where the professionals are unable to identify a cause (note, this is not the same as saying there is no cause—and yet FII assumes it is). FII does not require deception, and actively includes anxious and concerned parents. FII and PP actively suggest that autism, Ehlers-Danlos syndrome, chronic fatigue syndrome, gastro-intestinal difficulties, gait disturbance and similar may be alerting signs in the child or a factor in the parent (without any evidence basis), and therefore immediately have bias against these parents. FII focuses on outcome and ignores the reason for the behaviour."

 

I think this article raises some important issues. The vagueness of FII is a concern that I know Nigel Speight has strong views on. My impression from listening to the president of the RCPCH is that the establishment view is very blinkered and simplistic.

On the other hand I think there is a major problem with parents being told that their children have conditions that are not in fact relevant to whatever problems they may have.
The example given focuses on hypermobility, which is not in itself a cause for concern or source of major symptoms in children. The diagnosis of EDS comes up again - which I suspect is over diagnosed to the extent that 95-99% of those given the diagnosis do not have EDS. I do not know much about autism but I would not be surprised if something similar applied.

I see this sort of statement time and time again and to me it is simply not credible that so many children should have this combination of very rare illnesses - especially when they would seem to have nothing much to do with the actual problem, which is likely to be something more like ME.

I spent some time couple of years back trying to persuade the British Society for Rheumatology to make it clear that EDS should not be over diagnosed in the way it is. But I was met with excuses about it being politically difficult because of the people involved.

We seem to be up against the same sort of cosy belief in quackery that we saw with the RCP letter about NICE guidelines. British doctors are much more comfortable carrying on with GET and allowing colleagues to specialise in virtually non-existent diseases.

And of course the belief that EDS is somehow related to chronic fatigue comes from the BPS core - Hans Knoop.

I don't know what the answer is. I can see how conflicts so easily arises but unless the professionals involved are intelligent enough to see why it is hard to know how to improve things.

 

I may be misremembering so tagging @Tilly but it was EC' s " team" who were involved in drafting the current definition of FII and in the seminars disseminating the info to police , teachers and social workers etc . They were part of the " expert" group.

Given the existing cognitive bias , would it ever be otherwise ?

Andvit us schools, driven by performance stats for attendance and squeezed budgets for SEN provision who are often the instigators . Given the briefing they have had, how could they think otherwise ? ( Sarcasm)

 

I believe most of the charities were also on the guidelines such as Action for ME. I know RSPCC and Dr Barbados do the Dr Glaser safeguarding course at £25 a throw and in which everyone has to partake. We saw with the ME guidelines how they involve those stakeholders, so they can sign off their obligations and duty but can divert in the opposite direction to the lived experience at will due to undue pressure from those with vested interests.

If you join up the dots as I did with the NICE, review on the Family Courts, Sam McAlister in the Social Care reform, Will Quince of the Special Educational Needs (SEND) green paper, who recognises that parents are facing hostility you can see the carnage that the link to the research above shows happening.

Will Quince is asking for example these are links

Please submit your questions or comments to: team@specialneedsjungle.com.

If you want to send your own message to Minister Quince, you can do so here https://bit.ly/SENDmessage

I have made Forward for ME aware and will be updating them sadly they never get back to me or engage with me but they cannot say they were unaware as with the clarification on the Gps that do not follow the NICE guidelines ignorance is no defence.

 

Right, but that's not what happened with the ME guidelines is it?If they had, we would still have a guideline that recommends GET and CBT as treatments.

 

From the above:

"The reality of the ‘risk criteria’ approach to identification of cases of child abuse generally has been beautifully demonstrated by Lauren Devine (2016). She presented the accuracy levels of a risk prediction exercise exploring cases of child abuse in 10,000 children. The findings demonstrated that the risk predictors had over 97 per cent false positive rate—i.e. of the 1,228 predicted cases, 1,195 had no abuse occurring—whilst simultaneously missing 17.5 per cent of the forty true cases—of the 8,772 not predicted to be abuse cases, seven actually were abuse cases.

It is vital that there is a serious consideration of the balance between sensitivity and specificity, and the impact and implications of this, particularly when dealing with rare occurrences. Families who have been investigated—erroneously—for FII, report extremely high levels of trauma, distress, family breakdown and similar as a direct result of being viewed as possible perpetrators of child abuse."

 

It had happened at the beginning of the process and could have included CBT and GET in the guidelines if it was not for the determination of those putting out the truth, asking for FOI and willing to go to court. It could still happen as GPs are just doing what they have always done and most are left with treatments that harm under slightly different names so where is the change. Deaths are occurring and they need to be seen. It could all go back to how it was if it is not understood what is happening more widely.

These two statements from the link on Fii and its lack of research should raise substantial concern amongst all professionals and researchers -

since evidence-based practice and policies are the ‘gold-standard’ for medicine and social work, and yet what Glaser and Davis (2019) are stating is that they have published and circulated alerting signs and proposed interventions despite there being no research conducted to establish whether these alerting signs really do accurately identify those at risk for FII, and despite no systematic assessment as to whether the proposed interventions have any success in reducing child abuse.

When you think of the 'alerting signs' in 'perplexing presentations' and those young people with Me/cfs you can see that the abuse our children suffer are here to stay the damage to how mothers are seen and treated and are increasing with these paid courses on Fii.

 

I have no knowledge of EDS and joint hypermobility but the other things seem to be symptoms of Autistic Spectrum disease. The autistic brain has problems with processing information and all these labels make me think of some of the articles I have read which said that the names we give mental illnesses such as schizophrenia, depression and so on are just labels for symptoms and we need to understand the actual processes that are going wrong before we can put them into proper categories.

It is like looking at someone who has measles but saying the spots and the fever are due to 2 different diseases.

In this case everything is associated with brain workings except the joint problems. There is not enough neurology going on in these disease because psychology is still too dominant.

 

RSPCC and Dr Barbados




...Barnado's..........!!!!

This article is very important.
Today I posted elsewhere;
'As I was explaining I my last response about my personal family experience, despite my having Advanced Safeguarding training as a specialist teacher of vulnerable ill children (27 years!) , despite advance DRB CRB or what ever it is now called certified, I was not immune or spared suspicion from the paediatric consultant in 2000.

'Safeguarding and it’s training’ in Schools and education Social Service circles is a new shiny burgeoning industry, with lucrative contracts for training role out delivered by private companies who seem insensitive to ME and outside FOI or other checks.

Academies ‘buy' into this as we have seen in Suffolk recently.


For those with complex conditions like ME etc it is a nightmare of huge proportions.

It can affect young people up to 25 with Education & Health Care Plans (EHCP) and after that through challenge and use of the Mental Capacity Act.


I feel this is an important article which needs sharing…….. especially post NICE NG206.


It needs to be flagged with Multi Agency Hubs (MASH) and existing or new Specialist ME Service need to be forceful and proactive in taking a lead again potential for Harms.

We are currently having ongoing dialogues with Suffolk /NE Essex Alliance on this as the new ME Service Pathway and Service Spec works proceeds.



NICE need to take this up with the new work being planned;

NG206(NICE) Implementation statement

- guideline resource and implementation panel (membership from NICE, NHS England and NHS Improvement, Health Education England and, if appropriate, a public health perspective and Skills for Care), for final approval
it will then be published alongside the guidance and made known to Heather Stephens Senior Health Technology Adoption Manager.



We cover this through Community Engagement Partnership work and Healthwatch (previously LINk) before too

. Plus through SEND debates, OFSTED and Department for Education.

Previously since 2008 with Health Overview & Scrutiny, Local Authority and the Strategic Health Authority when it existed.
APPG Forward ME and Gibson Enquiry


How may times does this conundrum and iniquity need reiterating…………?

 

Again I must keep reiterating the importance of the joints in young people with problems with holding pens, walking and generally in the lower limbs, asthma, autoimmune like celiac and mast cell hEDS or EDS is not rare it is not recognised or understood and is most definitely under reported, diagnosed or supported. A parent does not need a doctor to say my child's joints are all over the place they can see it for themselves what they do have a problem with is when it impacts thinks like running or holding a pen or muscle tightness causing pain.

Now, whatever you call this or whatever you say, the evidence is in the children that suffer and are taken to family court and then taken from mothers who are just simply asking questions like - my child keeps falling and with unaccounted burses when going to A&E for unrelated problems are all over their body, they can't hold a pen, they have constant pain and fatigue. This subject MUST be talked about because of the issues it raises and concerns for lack of understanding. How many are then taken from their mothers as the condition is not recognised and then the foster parent or adoptive parent also has the same issues. I can tell you it often happens and is getting more so, due to abuse being at the tip of everyone's mind when they see a child.

I don't care who introduced it, what I do care about is a large amount of children suffering because they are not recognised as having physical barriers to life, it is not just an ME thing either it is increasing in other conditions. Just because of those who will not accept, that there is a problem with joints that is increasing year on year does not mean we should not look at the evidence that is coming through EHCPs and the tribunals. Those that do not or will not look at the toes feet, knees, hips, hands, wrists or skin of children because it is not important in their mind, are missing the problems we are walking into.

If a child constantly is in pain, has hives and their skin explodes with rashes, but still do not have allergies in the normal sense, yet have relief from antihistamines, have asthma attacks why should a mother be blamed for asking questions? To say that muscle tightness or hypermobile joints are not related to ME is beyond belief. If you have any contact with children as they become ill you would not say that.

To my knowledge there has been no survey asking the relevant questions such as have you noticed hypermobile joints in toes ankles, knees, hips, fingers and has this increased since being ill. Do they have asthma or milk and wheat intolerance. Does your child's skin often have hives, has their pain increased in these areas do their joints pop. I think if this was done we would see a dramatic picture. Please if you can ask for this simple survey please DO!!!! If done in all the cfs or ME settings we could have clarity and let us see what the results are going forward.

 

Whether this can be attributed to a specific condition or appears to mimic symptoms associated with a particular condition is imporatnt but not the be all and end all..
The patient/ carer experience counts and MUST be listen to and taken into account......

It cannot be brushed aside or subsumed under safeguarding suspicion.

I thought medicine was once regarded to be an 'art' as well as a science?

 

We are clearly going to disagree, @Tilly.

I base what I say on having worked alongside a hyper mobility clinic most of my working life, having read published population studies showing no clear relation between ME and hypermobility and discussion with paediatric colleagues involved in these issues - and more.

The hypermobility in EDS is genetic and does not increase with being ill. So-called hEDS is quite clearly not a monogenic disorder and so should not be included in the category of EDS.

I have said it all before. I understand that this affects you personally but we all have a responsibility to base what we say on evidence and from what I see there is no evidence for hypermobility, EDS or mast cell problems having any particular relation to ME. My duty of care to children is to try to get at reliable information and that is what I have always tried to do.

 

Nobody is doubting the need to listen. What is at issue is how that is then interpreted in terms of disease categories.

Clinging to disease categories that do not apply can reasonably be seen by medical personnel as unhelpful. I am not justifying safeguarding orders but I think it is very important to realise how unnecessary problems can be created.

Medicine was once an art but thank God it is now considered something that should be used on reliable evidence, just like flying aeroplanes or building tower blocks.

 

Weak muscles do not make a very big difference to joint stability. Muscle tone doesn't really exist. 'Tone' as assessed in a neurological examination is a specific reflex response to passive motion. Yes, people who are very weak may fall but by and large the people who I have looked after with minimal muscle function (chronic myositis for instance) learn to manage. Hand joints do not become unstable through muscle weakness unless it is the sort of thing you get with polio, muscular dystrophy or nerve transection. I don't think disuse is likely to do it. Instability tends to be most obvious in people who are active but have one muscle group non-functional and so joint stress is unbalanced.

I do not know what to say about individual cases without having a proper clinical evaluation but the MEBiobank sample did not show any increase in hypermobility I am told and the published population studies on hypermobility really don't show much evidence of widespread pain or fatigue.

 

I'm unaware of the historical stuff with the charities - though have picked up on enough 'hints' here and there to realise that there is some relevant history for ME charities (including reasons for who covers what and local/regional apparently) and am intrigued to know the contexts of all the various things over the years.

I do know that a Bristol uni news article on a research paper I found from Crawley back around 2011 had Action for ME and Colin Barton 'involved' and commenting: http://www.bris.ac.uk/news/2011/7903.html was

and get the impression that certainly historically Action for ME seemed to be part of setting up a number of things that are now not good - but I don't know the detail of to what extent ie was it them at the end making a political 'we'll change it from the inside' decision that never came off, or were they driving and funding it? and no idea how much persists today etc. ?

That is very worrying what you say about major children's charities pushing these courses, and very believable in how it can happen etc

 

Action for ME was funded by government and was not a charity where members voted every year and so on. They have had a dubious stand over many things possibly because they have been about 6 months of fatigue rather than complex ME.

In the early days, it was formed because some people felt that the ME Association was too restrictive with its focus on scientific studies so they were always more interested in alternative medicine. The magazines were the only way I could learn about ME so I was a member of both. The one from Action for ME was very glossy but every issue looked at a different treatment, all of which claimed great success. After one which said ME was caused by beds not being aligned properly, can't remember if it was with ley lines or magnetic force, I never renewed my membership.

I am biased by their association with Crawley and the Lightning Process (the head of AYME recommended it) but I do not think they have earned the trust of the patients. Their stance on many things has not been what I would want and though they are not making the right noises it never came as quickly as it should so we were always presented with one ME charity supporting things so it diluted too many arguments and held us back.

Others will have more detailed analysis this is just what I have felt over the years.

 

Like @Jonathan Edwards, I winced at the sheer length of this list. It seems to me to undermine the case this person is trying to make rather than support it.

ADHD, autism and dyslexia is a triad that co-occurs with reasonable frequency because all three are probably connected in some way (but we just don't know how yet), and sensory sensitivity is often assoacited with autism. These three do a lot of the explanatory work on their own, so why the need to add all those other things?

I'm not doubting this parent's case - what a terrible thing to be accused of FII - but just wondering out loud whether we are heading in a bad direction when we apply multiple descriptive diagnoses to the same person. By "descriptive" diagnoses I mean diagnoses that describe a set of symptoms/behaviours but don't yet offer explanation. When we heap on multiple descriptive diagnoses of this kind that overlap with respect to the phenomena they describe, it seems to confuse rather than clarify.