The Royal College of Paediatrics and Child Health (RCPCH) has refused to withdraw its 2021 guidance concerning fabricated or induced illness by carers despite a campaign from disability charities calling for its immediate withdrawal.
Campaigners include Cerebra, Action for Me and the Tizard Centre who wrote to the President and Chief Executive Officer of the RCPCH saying that there was clear evidence that the guidance led to unwarranted and inappropriate allegations of fabricated or induced illness which are traumatic for disabled children and their families. It said that disabled parents are four times more likely to face fabricated or induced illness allegations than non-disabled parents.
In the 2021 guidance, the RCPCH included any clinical situation where the parent or carer’s actions are aimed at convincing doctors and other professionals that a child is more seriously ill than is the case. It said that in these circumstances, the parent or carer may be acting on erroneous beliefs about the child’s state of health or, in some cases, deceiving professionals. There is a risk that the child will be directly harmed by the parent or carer’s behaviour but in some cases, and inadvertently, also by the medical team’s response.
The campaigners say that the weight of independent research and evidence from practice concerning the
discriminatory impact of the guidance and the harm it is causing to disabled children and their families, is such that no reasonable Royal College could fail to take such urgent action as to withdraw the guidance.
Cerebra published a report in 2023 that considered the prevalence and impact on families in England, Scotland and Wales of being accused of creating or exaggerating their child’s difficulties – an extreme form of parent carer blame. It found that fabricated or induced illness allegations allegations against parents of disabled children appear to be widespread.
The research indicates that parents in at least 74% of English children’s services authorities have experienced allegations – and that authorities in Scotland and Wales were also reported as initiating allegations of this nature.
It also found that 50% of allegations of fabricated or induced illness reported for this research were made after a parent carer had complained about the actions of the relevant public body. Most allegations (84%) resulted in no follow up-action or were abandoned and that in 95% of the cases the children remained living with the parent.
The report concluded that there was an urgent need for material revisions to be made to the RCPCH 2021 guidance including revisions:
Beverley Hitchcock, Head of Research and Information, Cerebra, said: “It is of great concern and disappointment to Cerebra that the Royal College came to the conclusion that they would not withdraw their 2021 guidance despite the evidence that was presented to them. This is in despite of the overwhelming fact that allegations of this nature can have such a devasting effect on parents and children which can cause harm resulting in a lifelong impact on families.”
The letter from the campaigners also referenced the British Association of Social Workers (BASW) guidance on the matter which they say is clear, evidence-based and identifies issues arising from the Royal College’s guide which place professionals in an invidious position as to best practice.
The BASW guidance noted that the Royal College’s guidance is ‘not founded on solid, indisputable evidence’ and expressed the importance of ‘an interprofessional consensus’. In this context, it noted that of those who agreed to be listed as consultees to the Royal College’s guidance ‘there is an absence of organisations representing key safeguarding bodies including social work, education, and the police’.
It added: “If social workers were to follow the RCPCH guidance, the proposed assessment criterion for fabricated or induced illness is likely to cast suspicion on many families who are not harming their children, including children and young people with disabilities and illnesses that are undiagnosed, or where their presentations have been misunderstood and subsequently misdiagnosed.”
In a reply letter, the RCPCH said that it had decided not to withdraw the guidance as it is meant to be read as a whole and they consulted widely on the limited evidence available at the time. It had also paid due diligence to the possibility that the guidance could be discriminatory.
It added that it was due to review that evidence in the guidance in Winter 2024.
The campaign group has now drawn its concerns to the attention of the Equality and Human Rights Commission.
