Thread by @SHughesDr

The British Association of Social Workers have published Fabricated & Induced Illness & Perplexing Presentations Practice Guide basw.co.uk/resources/fabr…
(PP ~ MUS) 🧵1/20
@doctorasadkhan @NurseDiane2020 @PandasPans @LongCovidKids @FiGullonScott @BASW_UK

This well-considered & positive document provides guidance to social workers (SW) to enable them to adopt professional curiosity & respond ethically to FII concerns. The following points are some that I feel are relevant to #PANS #PANDAS #LongCovid #MECFS #EDS communities 2/20

lt is recommended SW need to be aware of the lack of evidence for currently used indicators for FII & perplexing presentations and the high incidence of these indicators identifying children where illness is neither fabricated or induced #PANS #PANDAS #MECFS #EDS #LongCovid 3/20

It is recommended that SW need to be aware that the behaviour of autistic and neurodivergent parents and children is easily mistaken for FII as is the case in multisystemic conditions such as Myalgic Encephalomyelitis and Ehler’s Danlos Syndrome #MECFS #EDS 4/20

lt is recommended SW u/s complex presentations in suspected FII can often be due to rare/misdiagnosed illnesses -it is essential to work with parents/caregivers/children to determine required support & ensure specialists with knowledge of relevant conditions are involved 5/20

It is recommended that SW need to accept the potential for interprofessional differences about FII and be confident in their knowledge and skills to promote a social perspective #PANS #PANDAS #LongCovid #MECFS 6/20

Note RCPCH admit for their own FII guidance: “In the absence of published evidence, we relied on extensive consultation & expert consensus" and yet the RCPCH consulted with no key safeguarding bodies such as SW, education & police 7/20

SW have a duty to safeguard all children, but also have a duty to ensure parents/caregivers are supported rather than be subject to unnecessary child protection proceedings, when inappropriate and wrongful accusations of FII are made 8/20

Parent statement: “My son is 6. He has PANS/PANDAS & when he has a flare up, I find his behaviour hard to manage. I complained about his paediatrician and now she’s accused me of FII … SS have taken her seriously and I am terrified I will lose my son” 9/20

@BPNA_org psychologised #PANS #PANDAS & decreed child presenting with possible immune-mediated behaviour is referred to CAMHS. Medical investigation unsupported. Parents fear backlash from medical establishment if they disagree with local medics taking this stance 10/20

@BASW advises in cases such as #PANS #PANDAS "important to check that specialists, with specific expertise in the health concerns of the child, have been involved in diagnosis & that sufficient work has been carried out to rule out rare, undiagnosed medical conditions" 11/20

@BASW advise lack of diagnostic criteria, or research into prognosis & treatment of FII, mean high likelihood that children referred due to diagnosis disagreement with medical staff will be children with rare, undiagnosed medical conditions, misdiagnosed medical conditions 12/20

or children who have uncommon presentations of diagnosed conditions, rather than children whose parents are intentionally harming them...Disputes about diagnosis/treatment plans need to be carefully explored, by getting the views of all parties involved, including P & CYP 13/20

Inappropriate FII cases are not limited to #PANS #PANDAS. #MECFS sufferers often experience disbelief by medical practitioners about condition validity/reality (NICE, 2021b p. 55). Recent #LongCovid reports show P/CYP disbelieved & categorised FII (Munblit 2021) @BASW_UK 14/20

@BASW "Some parents report FII concerns are raised in context of requesting support for child or when raising complaint. It may be significant, therefore, that a FII concern is raised after complaint lodged against an agency, or when parent is applying for/appealing EHCP 15/20

@BASW find no evidence base in literature to support that presenting CYP to multiple professionals for assessment, or querying existence of undiagnosed conditions, is harmful to CYP. WHO acknowledges CYP needing to see many specialists over 7al years for accurate diagnosis 16/n

@BASW notably highlights discrimination RCPCH says mothers are nearly always FII instigators. Basis for this is case studies of Munchausen’s Syndrome by Proxy (exceedingly rare & not same as FII) &‘clinical experience’ as there are no statistics nor research on FII incidence17/20

RCPCH assertation that mothers who use internet searches to ‘get attention’ is both demeaning & inaccurate. Part of the reason for the growth in mothers seeking information is, undoubtedly, lack of understanding of & clarity about these conditions amongst some professionals 18/20

@BASW highlights #MECFS NICE guidance and safeguarding which directly challenges RCPCH guidance (I hope this photo can be read - if not, go to page 10 of the BASW FII and PP guidance (link at top of thread) 19/20

This is a long thread...I hope parents/clinicians/SW/educators dealing with FII & PP situations use this as a push to read and digest the @BASW guidelines on FII & PP. CYP with undiagnosed/controversial conditions need help from relevant specialists, not dismissal & FII 20/20