Dr Charles Shepherd comments:
“The RCPCH's more positive response to the recently published NICE Guidelines is to be welcomed. It is noteworthy that the college is no longer aligning itself with other colleges in continuing to oppose and criticise the guidelines but proposes that everyone move forward in a constructive manner.”
Dr Nigel Speight, MEA paediatric adviser, comments:
“The College's continued concerns around safeguarding I personally find puzzling. There seems to be undue concern about the possibility that parents may fabricate severe ME in their children, and then keep them confined to bed hidden from professional view.
“In my experience by far the commoner situation is where young people with severe ME are neglected by their paediatricians, who hardly ever visit them at home. The College's urging paediatricians to see their severely affected patients at home more frequently than 6 monthly is therefore to be welcomed.
“The College seem unaware of an even more distressing scenario whereby the paediatrician ends up accusing the family of severely affected young ME sufferers of being cases of Fabricated and Induced Illness (FII).
“This situation seems to be becoming more common since the College's recent emphasis on widening the definition of FII to include Perplexing Presentations (PP) and Medically Unexplained Symptoms (MUS).
“For an innocent family of a severely affected young person to be subjected to safeguarding proceedings in this way is naturally extremely distressing, and a case of adding insult to injury. Extreme cases can even be labelled examples of “Child abuse by professionals”.”
Member Briefing on the New NICE Clinical Guideline for ME/CFS
16 November 2021
New ME/CFS guideline published
On 31 October 2021, NICE published an updated version of the ME/CFS clinical guideline following their consultation.
The RCPCH consulted on the guideline in November 2020 and continued to meet with the National Institute for Health and Care Excellence (NICE) as they worked with patient groups and representative organisations to finalise the guideline.
The RCPCH raised a number of issues in the consultation on the draft guideline (RCPCH’s response is on pages 742-775), including safeguarding of children and young people (CYP), practicalities of assessment and recommended therapies.
Whilst we acknowledge that NICE has made further revisions to the final guideline, the RCPCH is concerned that the provisions described for safeguarding may preclude the rapid identification of abuse and neglect of children and young people in some (hopefully rare) instances.
Where children are thought to have severe or very severe ME/CFS resulting in withdrawal and school absence, or where manifestations of the disease are similar to those that typically arouse safeguarding concerns, more frequent face to face review (than the six-monthly suggested in the new guideline) should be considered to ensure the child or young person’s wellbeing.
It is essential for paediatricians to be consulted to exclude other causes of fatigue and malaise such as cancer or occult infection. It is clearly important that alternative treatable causes of fatigue should not be missed.
Finally, NICE has acknowledged the disparity in which the definition of Graded Exercise Therapy is understood. We anticipate that this will be fully discussed between clinicians and patients (and their parents or carers) in respect of previous, existing or proposed therapy as these important specialised services continue to be developed.
We hope this briefing, which contains our view on some of the new recommendations, will support paediatricians in taking the new guidance forward.
Note: The guidance states that the recommendations were developed based on evidence reviewed before the COVID-19 pandemic. NICE has not reviewed evidence on the effects of COVID-19, so it should not be assumed that these recommendations apply to children and young people diagnosed with post-COVID-19 syndrome.
RCPCH view and advice for paediatricians
It is extremely welcome to see inclusions on safeguarding in the guideline, including some with specific reference to children. However, we remain concerned that the provisions described for safeguarding may diminish the voice of children and young people and prevent the rapid identification of abuse and neglect in some instances.
Paediatricians should consider the individual person in front of them. In cases where children are thought to have severe or very severe ME/CFS resulting in withdrawal and school absence, or where manifestations of the disease are similar to those that typically arouse safeguarding concerns, paediatricians should consider more frequent in-person reviews than the suggested six monthly intervals suggested in 1.7.6 in order to ensure the child or young person’s wellbeing.
The NICE Guideline ME/CFS Safeguarding Recommendations
1.7.1 Recognise that people with ME/CFS, particularly those with severe or very severe ME/CFS, are at risk of their symptoms being confused with signs of abuse or neglect.
1.7.2 If a person with confirmed or suspected ME/CFS needs a safeguarding assessment, directly involve health and social care professionals who have training and experience in ME/CFS as soon as possible.
1.7.3 If a person with confirmed or suspected ME/CFS needs to be assessed under the Mental Health Act 1983 or the Mental Capacity Act 2005, directly involve health and social care professionals who have training and experience in ME/ CFS as soon as possible.
1.7.4 Recognise that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/CFS:
- physical symptoms that do not fit a commonly recognised illness pattern
- more than 1 child or family member having ME/CFS
- disagreeing with, declining, or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf
- parents or carers acting as advocates and communicating on their behalf
- reduced or non-attendance at school.
1.7.5 Be aware that recognising and responding to possible child abuse and neglect (maltreatment) is complex and should be considered in the same way for children and young people with confirmed or suspected ME/CFS as with any child with a chronic illness or disability. Follow the NICE guidelines on child maltreatment and child abuse and neglect.
1.7.6 Offer children and young people with ME/CFS a review of their care and support plan at least every 6 months, and more frequently if needed, depending on the severity and complexity of their symptoms.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on safeguarding.
Full details of the evidence and the committee's discussion are in evidence review B: information, education and support for health and social care professionals.
Other supporting evidence and discussion can be found in evidence review A: information, education and support for people with ME/CFS and their families and carers and appendix 1: involving children and young people.