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

Thanks for explaining, Bobbler.

I have no idea how many families are being wrongly accused of fabricating their child's illness, but I don't imagine that it would be thousands every year. Nor that this specific issue takes up a huge part of the local authorities' social care budget. That budget is huge because it has to pay for carers to help sick and disabled people in their own homes and to pay care home fees for those who aren't rich enough to self fund.

I would think social workers' salaries are a small part of that, not the bulk of it and the specific cost of social workers to work on FII cases would only be a small part of the social work department's budget. I can't see that cost to local authorities is the main issue here, or that anyone is making lots of money out of this.

The main issue to me is that any child and family wrongly classified as FII is a tragedy and a trauma for that family and likely to lead to inappropriate care for the sick child. That is where the focus needs to be - on the misdiagnosis of FII.
 
I know a family who were been accused of it, nothing to do with ME, but involving well defined and dx 'standard - ie well understood, illness. Turned out to be spurious and done to cover up professional failings.

Childrens social care/family court is just the wild west istm
 
Trish said:
Thanks for explaining, Bobbler.

I have no idea how many families are being wrongly accused of fabricating their child's illness, but I don't imagine that it would be thousands every year. Nor that this specific issue takes up a huge part of the local authorities' social care budget. That budget is huge because it has to pay for carers to help sick and disabled people in their own homes and to pay care home fees for those who aren't rich enough to self fund.

I would think social workers' salaries are a small part of that, not the bulk of it and the specific cost of social workers to work on FII cases would only be a small part of the social work department's budget. I can't see that cost to local authorities is the main issue here, or that anyone is making lots of money out of this.

The main issue to me is that any child and family wrongly classified as FII is a tragedy and a trauma for that family and likely to lead to inappropriate care for the sick child. That is where the focus needs to be - on the misdiagnosis of FII.
Click to expand...


OK thanks. Most of my impression of this issue has been from news articles I've seen of recent years (not all from the ME side of things). I'm adding up the issue covering those under the austistic spectrum and whether there are also other certain conditions that would tend to be vulnerable to this and wondering how big it is, how many staff getting involved from various authorities etc.
 
In the HoC Debate on ME in 2019 Carol Monaghan MP relates what happened to an 8 year old child with ME ("B") when Social Services put the child on the 'At Risk' Register, intervened in the child's medical care, resulting in years of mistreatment (activity programs) and leading to terrible disability for the child, now 15.

Carol Monaghan states "this is the case for 1 in 5 of families living with a child with ME", though it's not clear if the 1 in 5 is Social Services assessment, or involvement, or actual intervention in dictating treatment with a particular clinic (activity programs).

 
Trish said:
Thanks for explaining, Bobbler.

I have no idea how many families are being wrongly accused of fabricating their child's illness, but I don't imagine that it would be thousands every year. Nor that this specific issue takes up a huge part of the local authorities' social care budget. That budget is huge because it has to pay for carers to help sick and disabled people in their own homes and to pay care home fees for those who aren't rich enough to self fund.

I would think social workers' salaries are a small part of that, not the bulk of it and the specific cost of social workers to work on FII cases would only be a small part of the social work department's budget. I can't see that cost to local authorities is the main issue here, or that anyone is making lots of money out of this.

The main issue to me is that any child and family wrongly classified as FII is a tragedy and a trauma for that family and likely to lead to inappropriate care for the sick child. That is where the focus needs to be - on the misdiagnosis of FII.
Click to expand...


There is the following article from Sean O'Neill from June 2020: https://www.thetimes.co.uk/article/...-me-families-accused-of-child-abuse-np968v9dt
which is ME-specific and goes onto talking about FII more but includes the following:

"Hundreds of families whose children suffer from the debilitating condition ME have faced child protection investigations in the past decade, The Times has learnt.

Campaigners say that ignorance of, or disbelief in, myalgic encephalomyelitis, also known as chronic fatigue syndrome, leads to families being referred by schools or doctors to social services on suspicion of child abuse and neglect.

The Tymes Trust, which supports young people with ME, says that since 2010 it has advised 337 families who have needed help in dealing with social workers.

Cases examined by The Times included police involvement, parents summoned to the family courts, child protection case conferences and attempts to overturn diagnoses of ME to place children in psychiatric care."
 
Tymes Trust Report 2008

'Child Protection Issues: A Presentation to the All Party Parliamentary Group on ME'

Jane Colby Former Headteacher Executive Director, Tymes Trust
Joanna Smith Welfare Rights Advisor, Brunel University


'Jane first laid out the situation regarding Child Protection procedure and gave the Trust’s recommendations to help stop their misapplication to the families of children with ME. She said: ‘We cannot just discuss this problem and wring our hands over these injustices.

I have been fighting this problem since the 1990s and I did the survey for the BBC Panorama programme which revealed the statistics of the problem at that time. Now these cases seem to be escalating again. The Trust is today making practical suggestions that we believe would go some way to improving the situation.’

Jane explained that the Trust was continually dealing with these cases, which were frequently reopened after they had previously been resolved without action.'

https://www.tymestrust.org/pdfs/childprotectionissues.pdf
 
A while back in another thread there was reference to how paramedics behaved in a particular case - putting this here for future reference:

As with all persons having professional interaction with children in the UK, Paramedics have strict guidelines to follow in respect child safeguarding - they will always err on the side of caution because the consequences of not doing so are a) potentially lethal for the child and b) media/public outrage when failures happen.

Child abuse has many forms, and is sadly highly prevalent, the difficulties around ME/CFS and the misdeeds of psychologists and psychiatrists in parent blaming aren't going to stop other medical professionals being hyper aware of child safeguarding issues . The guidance specific to paramedics isn't publicly available but it will incorporate all the main provisions of NHS guidance on child safeguarding: Safeguarding children, young people and adults at risk in the NHS: Safeguarding accountability and assurance framework - downloadable as pdf - 46 pages !

By way of a bit of context, over 30 years ago I attended a talk by the head of a large local authority Education Department - at the time a very significant public role, though downgraded by later Government reforms. On the subject of safeguarding (then a novel term) the speaker told the audience how he had incidentally found out that both he and his partner (a GP) had been anonymously reported to Social (child protection) Services regarding child neglect concerns - a file had been opened and an investigation started. The investigation had not proceeded beyond initial stages but despite the elapse of several years the file on the family remained open. The speaker concluded that, if children are to be adequately protected then sadly this Orwellian state affaires was likely necessary as a least worse option. The intervening decades have done nothing to alter that as an accepted perspective of the UK public. We need to understand that as the cultural background in which parents with a child with ME/CFS have negotiate their way.
 
Despite the history of serious misuse of safeguarding in ME, I am not unsympathetic to child protection workers. It is one of the most difficult and stressful jobs of all, with hopelessly inadequate resources, and they are damned if they do and damned if they don't.
 
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