Fabricated or Induced Illness Position Statement
We are aware that many families with children with PANS and PANDAS are currently subject to accusations regarding safeguarding and/or Fabricated Induced Illness (FII). FII is a term used by the Royal College of Paediatrics and Child Health in the UK.
There is a lack of clarity amongst professionals as to what constitutes FII, but for families it can be understood as a situation where a professional raises concerns about the parent’s behaviour or motivation associated with a child’s medical presentation. These concerns may be raised by schools, medical or social care professionals. There are no current figures for the rates of FII, but there are thousands of cases raised each year, and recent research and highlights that these are usually aimed at the mother. It is far more likely that the child has a complex or perplexing condition that is difficult to identify, than the family is making up, exaggerating, or even inducing the symptoms.
If a child has a complex condition that is difficult to diagnose (and the possible condition is one currently subject to medical dispute, controversy or developing knowledge), then it is very easy for families to be subject to accusations of fabricating or inducing the illness.
There are likely to be several reasons why parents/caregivers of a child with PANS and PANDAS are vulnerable to accusations. These include but are not limited to:
A lack of a clear diagnostic pathway and NICE treatment guidelines in the UK. It is currently very difficult for children with PANS and PANDAS to receive a diagnosis from the NHS. Many families therefore seek care from independent clinicians and/or multiple medical professionals.
Clinicians using different names interchangeably for the conditions. This is causing confusion when parents/caregivers are using different terms to the clinic letters.
Most professionals have not heard of, or received any training in. the conditions so will not be in position to accurately recognise and document the signs.
The symptoms of PANS and PANDAS are often very perplexing and changeable.
The signs of PANS and PANDAS echo many other much more well-known conditions such as Autism Spectrum Condition (ASC) or anxiety disorders that the child may be diagnosed with. Wrongly diagnosed, the child will then not respond to the typical treatments and psychological therapies. They are also likely to develop further ‘perplexing symptoms that do not fit with their ‘misdiagnosis.’
Children with PANS and PANDAS present with many symptoms that directly mimic red flags in safeguarding.
Children with PANS and PANDAS may ‘mask’ their symptoms in school or in clinic settings. This leads to conflict and differences in professional and family perspectives on how the child is presenting.
Many children with PANS and PANDAS struggle to attend school in the context of a misunderstood and misdiagnosed condition. This can be a further red flag for professionals.
PANS and PANDAS are often relapsing and remitting conditions, and symptoms and signs can be hugely variable. A child may therefore not display their symptoms in clinic appointments or during school assessments, when some time has elapsed from when referrals were first made.
PANS and PANDAS are so traumatic that the whole family is hugely impacted (including siblings) These factors can easily be misunderstood and behaviours misinterpreted.
The impact on caregivers of false accusations of FII is immense. Desperate to secure medical treatment for their children, families can quickly find themselves in a position where the very professionals who they rely on for support are the ones raising safeguarding concerns. It is a devastating situation.
Unfortunately, as a small charity we are not currently in a position to offer individual 1:1 advocacy. We are exploring options for greater levels of support in the future which will involve securing appropriate professional expertise. PANS PANDAS UK is working with independent social worker Cathie Long to produce an online guide specifically for PANS and PANDAS and FII. This guide will be aimed at health, social care and educational professionals. There are also provisional plans in place for Cathie Long to deliver a webinar early in 2023 about FII specific to PANS and PANDAS. This will include the opportunity for families to ask any questions. Sunshine Support are also planning their second FII awareness week in May 2023 which the charity is aiming to participate in.
Steps to take for families accused of FII
Seek advice as soon as you are accused of exaggerating or making up your child’s symptoms. Log all telephone conversations and appointments with professionals including consultants, GPs, nurses, teachers, midwives, school nurses, social workers, and health visitors.
As difficult as this can be, you need to do all you can to work with professionals to prevent any escalation in their concerns which could lead to a less desirable or serious outcomes
Ask any professionals involved in your child’s care to provide third party observations and documentation as appropriate (for example from childminders).
Ask your school to provide you with observations, assessments and a pre- onset baseline for your child. This should include attendance levels.
Keep everything in an email so that there is a paper trail.
Always take someone with you to meetings. Do not attend meetings by yourself.
Make a Subject Access Request to any organisation/agency who has dealt with your child. These records will be important.
If your family are currently facing FII accusations the following information and links may also be helpful.
Protecting Your Child from the Child Protection System. Book by Beth Malony. Written by an American Lawyer, whose son suffered from PANDAS, this book is helpful no matter what country you live in. https://www.amazon.co.uk/dp/B09RNHK4VP
The child protection system can be difficult to understand. Here are some links to advocacy and support and advice for families.
https://www.fiightback.org/ - Fiightback was set up to support those accused of FII, to fight for an unbiased criteria, a fair investigation and a pathway to rebuild the lives of those wrongly accused - Facebook group - https://www.facebook.com/fiightback/
Parents, Families and Allies Network- This Advice and Advocacy Service is for families who are involved with children’s services in England or need their help. They support families to understand the law and child welfare processes when social workers or courts are making decisions about their children.
This content will be updated and is subject to revisions.
Published November 2022
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