For parents of a child with Long Covid, following last week's focus on FII Awareness, our blog will outline how and why allegations of Fabricated and Induced Illness happen and what you can do if you are in this situation.
Firstly know that you are not alone - Long Covid Kids is aware that a number of families have faced or are facing allegations of FII
As a Charity that supports families with children and young people with Long Covid, we are aware that some professionals may raise concerns about a parent's behaviour or motivation associated with their child's medical presentation. These concerns may be related to Fabricated or Induced Illness (FII), a term used by the Royal College of Paediatrics and Child Health in the UK to describe a rare form of child abuse. Here is also how the NHS understand FII.
Guidelines from the British Association of Social Workers on Fabricated or Induced Illness and Other Perplexing Presentations state that: ‘When a child or young person is presented by their parents/caregivers with a condition which cannot be medically explained, it is deemed as a Perplexing Presentation (PP). PP is an alerting sign to possible Fabricated or Induced Illness (FII) which is described by the Royal College of Paediatrics and Child Health (RCPCH) as ‘a clinical situation in which a child is, or very likely to be, harmed due to parent(s) behaviour and action, carried out in order to convince doctors that the child’s state of physical and/or mental health and neurodevelopment is impaired (or more impaired than it actually is)’ (RCPCH, 2021, p. 11)’. They also recognise that PP can be due to rare or misdiagnosed conditions and that there is a 'lack of evidence for currently used indicators for FII and perplexing presentations and the high incidence of these indicators identifying children where illness is neither fabricated or induced.'
The charity PANs PANDAs UK explain that ‘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’.
In this blog we emphasise that Long Covid is a real and complex condition that is affecting tens of thousands of children and young people worldwide. Symptoms of Long Covid can sometimes be misconstrued as FII and this blog aims to increase professionals' knowledge of Long Covid and the overlap in how it can present.
We believe that it is essential to approach Long Covid with an open mind and to listen to the experiences and concerns of children and families. It is important to recognise that Long Covid is a new and evolving condition, and there is still much to learn about its symptoms, causes, and treatments.
As a Charity, we are committed to working collaboratively with healthcare, social care and education professionals to support the health and well-being of all children and young people with Long Covid. We welcome open communication, transparency, and mutual respect in our interactions with professionals and ask that our concerns and experiences be taken seriously.
We understand that 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, health 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 highlights that these are usually aimed at the mother.
*Below we talk about "red flags" for FII - these are signs or behaviours observed in children and families, which when viewed alone can be completely understandable, but when seen in a pattern can become more concerning for professionals. Unfortunately the complex nature of Long Covid can mean that more than one of these are triggered, so below we also offer guidance around documenting your child's experience in order to support you in addressing professionals' concerns.
There are likely to be several reasons why parents/caregivers of a child with Long Covid could be vulnerable to accusations of FII. These could include but are not limited to:
Long Covid can affect any system within the body. Many families seek care from multiple medical professionals. The LCK health survey (2023) found twenty different specialities and clinical domains listed as being involved in Long Covid referrals and you can see our body map of the wide variety of symptoms reported.
There have been long waiting times for children to be seen at paediatric Long Covid Hubs (where they exist) and to receive diagnoses. The LCK health survey (2023) states that 66.4% of children and young people with Long Covid had to wait more than six months for a referral to a Long Covid clinic and for 28.3% this was longer than three months. Whilst there have been improvements in those timescales since our survey, some hubs have also since closed and not all areas of the UK have equitable service provision.
There is a lack of a clear diagnostic pathway and NICE treatment guidelines in the UK. It can be very difficult for children with Long Covid to receive a diagnosis from the NHS and to date much of the treatment offered has been rehabilitation based. Consequentially, many families seek care from independent clinicians and some seek treatments abroad. The LCK health survey (2023) reported that 51% of respondents were using private healthcare or looking abroad for treatment options. Unfortunately one of the red flags for FII is seeking multiple medical opinions or not accepting reassurance - so families attempts to get care, treatment and support may also be seen as putting children through unnecessary medical investigation. LCK is aiming to support education and school professionals to understand why families seek private input and to ensure that the NHS and schools work collaboratively with private professionals.
Many professionals have received little or no training in Long Covid so will not be in position to accurately recognise and document the signs. Clinicians can use different names interchangeably for the condition. This can cause confusion when parents/caregivers are using different terms to the clinic letters.
Children with Long Covid present with many symptoms that directly mimic red flags in safeguarding. Long Covid is a relapsing and remitting condition. The symptoms of Long Covid are often very perplexing, different for different individuals and hugely variable across hours, days, or longer.
As you can see from our toolkit, children with Long Covid also have been receiving co-occuring diagnoses of conditions that have been equally misunderstood, such as PANS/PANDAS, ME/CFS, FND, PoTs, hypermobility and neurodivergences (such as autism or ADHD).
The symptoms of Long Covid can be misunderstood as anxiety. 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 Long Covid may ‘mask’ or manage some of their symptoms by pacing and resting, using aids such as wheelchairs, or use up all their energy attending school so that they are unable to take part in other aspects of life. A child may not display their symptoms in clinic appointments or during school assessments, when some time has elapsed from when referrals were first made. This leads to conflict and differences in professional and family perspectives on how the child is presenting. Daily Activites that are limited and using aids seen by others as 'unnecessary' can be seen as a red flag despite this being an essential part of pacing with a chronic condition.
For many children Long Covid is an invisible illness and, when well rested, children may be able to function well. What is often not seen is the subsequent impact on them in terms of Post Exertional Malaise/Symptom Exacerbation, increased fatigue and increased pain.
We know that children with Long Covid can sometimes struggle to be heard or can be misunderstood by professionals, and this can make them reluctant to talk at appointments. Parents talking for children is again another red flag so supporting your child to self-advocate as much as possible, including them being able to give a valid reason for deferring to you, such as: "I want mum/dad to tell you more as I can't explain it very well, I'm not feeling well enough" etc. Please look out in our support group for some upcoming opportunities on supporting children and young people with self-advocacy.
Many children with Long Covid struggle to physically attend school even though they want to. This can be a further red flag for professionals. The LCK Education Survey (2023) showed that attendance was affected for 75% of respondents with only 7% able to typically attend a full week of school.
Long Covid can impact the whole family (including siblings). It is not uncommon for a parent and a child, or two siblings within a family to both have Long Covid.
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 to everyone affected. We are exploring options for greater levels of support in the future which will involve securing appropriate professional expertise.
If you find that you are the subject of fabricated or induced illness accusations or safeguarding concerns have been raised about you by schools, healthcare, social care or other professionals we recommend you take the following steps:
Find out all you can about fabricated and induced illness, see the links below.
Find yourself a support network and link up with other parents who are having or have had similar experiences e.g. LCK Facebook Support Group and other local or national groups. Seek advice and support as soon as you are accused of exaggerating or making up your child’s symptoms.
Create a document for your own information which has a clear timeline of your child's experience with Long Covid which includes initial infection details, symptom start dates (where known), how, when and by who their Long Covid diagnosis was given, medical appointments and their outcomes (both within public and private healthcare), medication trialled (including who prescribed it or the evidence to support its use, any side effects, how it affects symptoms, and if stopped, note when and why). You may find our record keeping document helpful for this. This could then be provided to relevant professionals so that everyone has the same information and understanding of what you have done/tried so far. Being able to share a complete written overview that includes all signs and symptoms means that even when you have limited time in appointments, and so have to prioritise talking about the most disabling symptoms, professionals have an understanding of everything that is happening for your child. Likewise, some families have found using video diaries to document symptom severity or functional limitation has been helpful in healthcare consultations. Another red flag for FII is when one particular health problem is resolved, the parent or carer may then begin reporting a new set of symptoms and this type of record-keeping may help.
If your child has been unable to attend school, you could create a similar document for your own records around their attendance, communications you have had about that and reasons for absence. Include decisions made with the school about support for educational provision (such as medical tuition) if your child is absent for over 15 days (remember this is in total over a school year and doesn't have to occur in one block). However, please note that some families have reported that by providing folders of medical or attendance information they have actually raised red flags and been accused of being 'over-fixated' by their child's condition.
Communicate via email where possible as this leaves a paper trail of evidence. Put all email communications around your child and their Long Covid into a folder in your email account for easy reference. If you discuss/arrange something verbally, follow it up with an email to confirm what was said. Keep detailed and accurate records of all telephone calls, correspondence and appointments with professionals from the Local Authority, Education, Health and Social Care. If you disagree with records sent to you make sure to reply and note the specific concerns you had and share your understanding of what was said or done and ask for the record to be corrected if possible.
Always take someone with you to meetings to support you and to take notes. Do not attend meetings by yourself if you can avoid it.
Support your child to advocate or speak for themselves in meetings as much as possible - in a child protection process independent advocates can meet with your child to hear their views and then speak on their behalf in formal meetings if they find this challenging to do.
As difficult as this can be, you need to work with professionals as much as possible to prevent any escalation in their concerns which could lead to a less desirable or serious outcome. Changing or refusing to see medical professionals can also be a red flag. If there is a professional you or your child really cannot work with, we recommend documenting this to them in writing with your reasoning.
Where possible, seek expert advice from professionals who understand Long Covid, can provide evidence as to the physical causes of symptoms and can 'speak for' you and your child.
Engage good legal representation – Sunshine Support advise that if child protection proceedings are in place you might be eligible for Legal Aid Agency funding. They recommend getting advice before choosing a lawyer and using one from outside your area to ensure there is no conflict of interest.
Ask your school to provide you with observations, assessments and a pre-Long Covid baseline for your child. This should include attendance levels pre and post infection.
Work with your school. Many have safeguarding processes that mean that they are expected to see pupils at home if they have been off for a while. Although it can be tempting to cancel such appointments when your child is unwell, it is important for schools to see your children at all levels of severity of symptoms. We often find for example that children can attend school and appear quite well on one day, and because they then get Post Exertional Malaise/Symptom Exacerbation they are then unable to attend on subsequent days. It is important for school to be able to see this.
The impact of Post Exertional Malaise/Symptom Exacerbation is also important to consider for healthcare appointments. If you have had a particularly active/challenging healthcare appointment do encourage the professionals to follow up with you and your child a day or two later in order to determine the impact of engaging in that session on their symptoms.
Ask any other professionals involved or who know you and your family to provide third party observations and documentation as appropriate (for example childminders).
Engage appropriate professionals to undertake independent assessments e.g. psychiatrist, educational psychologist, speech and language therapist, occupational therapist, social worker, psychotherapist, play therapist.
Make a Subject Access Request under General Data Protection Regulations (GDPR) to gain copies of records held by agencies.
FII Resources
If your family are currently facing FII accusations, the following information and links may also be helpful:
Long Covid Kids Families padlet
British Association of Social Workers: Practice Guide for Social Workers
Sinclairslaw-education-magazine-episode-6-fabricated-or-indu ced-illness
Cerebra.org.uk Fabricated+Induced+Illness
RCPCH-child-protection/resources/perplexing-presentations-a nd-fii/
TymesTrust False Allegations in Childhood ME.pdf
Survivors of FII – Your Personal Experiences with Accusations of Fabricated or Induced Illness – Sunshine Support
(sunshine-support.org)
FII FACT SHEET (sunshine-support.org)
Facing Allegations of Fabricated and Induced Illness – It Must Be Mum (wordpress.com) Fabricated and Induced Illness | Child Protection Resource
The child protection system can be difficult to understand and navigate. Here are some links to advocacy, support and advice for families - please note that some of these are paid for services:
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.
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.
Sunshine Support offer free downloads and paid services to support families facing allegations of FII.
We want the families we support to understand that Social Services involvement can be supportive and a referral to them is not always indicative of FII or safeguarding concerns against parents and caregivers, but a recognition that a more coordinated approach between education, health and social care is needed. Most social care teams have Early Help options and the outcomes of a safeguarding referral may either be that a child is put on a Child Protection Plan or a Child in Need plan. Each of these comes with a variation in the amount of input needed by a social worker and coordinated professionals meetings but all are in place to safeguard the child and ensure that their needs are met to the best of everyone's ability.
Summary
As we know, Long Covid is a novel illness with very limited supporting paediatric research. At times, it has been subject to political commentary, medical scepticism and controversy by those who seek to diminish its risks. This makes it no less real to those affected.
In their guidance ‘Protecting Parents from False Allegations of Fabricated or Induced Illness’, Special Needs Jungle describe that it can be ‘one of the most frightening situations that anyone can face and parents often don't know where to turn. What's more, because of the stigma attached to a child protection investigation, parents find themselves isolated at a time when they need all the support they can get’.
We hope this post has provided useful information to anyone experiencing FII allegations and also helped all parents and caregivers understand how to document their child's experience of Long Covid in order to better protect their families.
As a charity we do often get media requests asking us if we have families experiencing FII or similar situations so please do get in contact if you are willing to share your story.
Dr Sue Peters (LCK Education Team and Educational Psychologist) and Kirsty Stanley (LCK Health Team and Designated Safeguarding Lead and Occupational Therapist).
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