Published in InterAction 61, Autumn 2007
Sadly, there is a history of parents of children with M.E. being falsely accused of Fabricated or Induced Illness (FII), formerly known as Munchausen’s Syndrome by Proxy. The following article has been extracted from guidance produced by the Association of Young People with M.E. (AYME) and Action for M.E. with support from BBC Children in Need.
Susan, aged 14, had no diagnosis and was only attending school on average two half days a week. Whilst at school she appeared to cope fairly well with classes but struggled walking between lessons. Her parents believed Susan had M.E. but were unable to get a diagnosis, although they reported that she did meet the diagnostic criteria. After half a term the Education Welfare Officer asked the parents for a letter confirming the diagnosis or she would have to call a Child Protection case conference.
Up to this point the family had received no advice, input or support from health, social services or education, although they had repeatedly requested a referral to a specialist clinic and begged for help. They contacted AYME who were able to organise a referral to a specialist clinic.
The parents immediately notified the Education Welfare Officer giving the date, time and name of the paediatrician their daughter was due to see. Unfortunately before they could attend the appointment they were informed during a visit from a social worker and the Education Welfare Officer that a Child Protection case conference had been held and attended by 11 professionals from the police, health, education and social services and Susan was more than likely going to be placed on the At Risk Register.
Following this visit Susan and her family were extremely distressed and alarmed by what was happening. The following week Susan saw the specialist paediatrician who gave a clear diagnosis of CFS/M.E. The paediatrician attended a professionals’ meeting, following which Susan’s parents were told the “issue had gone away.”
This process caused so much stress for Susan and her family that it resulted in her being removed from the school register and tutored at home.
Unfortunately, Susan and her family are not unique in their experience.
Fabricated or Induced Illness (FII), formerly known as Munchausen’s Syndrome by Proxy, is a genuine but very rare condition where a parent induces or falsely reports symptoms of an illness in their child. The number of reported misplaced allegations against parents of children with M.E. has been small, but their impact is devastating.
In addition, a larger number of parents report “feelings of not being believed” and of “being under threat of action” if they don’t comply with the advice given by professionals in education, health and social services.
In general, it seems that misplaced allegations have arisen from a lack of understanding and knowledge amongst professionals in health, education and social services about M.E. In particular, it seems to focus around lack of clear diagnosis of M.E. and disagreement between parents and professionals over preferred treatments.
Some child protection cases have been brought to enforce management programmes which were at variance with the wishes of the families or carers, child or young person, and without reference to Fabricated or Induced Illness. In other instances, cases have been brought by professionals who “did not believe” in M.E., or have come across a severely affected child for the first time and did not recognise the disorder or were made very anxious by the severity of the symptoms.
Although schools are obliged to refer concerns over attendance to the Education Welfare Service and Social Services, consideration needs to be given to medical advice and reports provided by Consultants and General Practitioners.
Training and information for Education Welfare Officers, Special Education Needs Coordinators, District Nurses and other professionals can be requested through AYME.
Guidance and information
There are several key documents on the management of M.E. addressing the issues that have led to false accusations and which emphasise the partnership needed between the child and their family and the professional team:
The Chief Medical Officer’s Working Group Report on M.E. (2002) says: “The working group notes that neither the fact of a child or young person having unexplained symptoms nor the exercising of selective choices about treatment or education about such a patient by parents/carers and/or young person constitutes evidence of abuse.”
The Royal College of Paediatrics and Child Health (RCPCH) evidence-based guideline for the Management of CFS/M.E. (2004) states that: “Developing a rapport with the family and establishing a cooperative and empathetic relationship using a sensitive and flexible approach is essential to the success of the management plan… As the differential diagnosis of FII can be very difficult, great care must be taken and the paediatrician should review the Department of Health guidelines and the RCPCH guidelines on FII… A referral is likely to be destructive if based on flimsy or ill-reasoned evidence… Refusal to follow a treatment programme is unlikely to be regarded by a Court as sufficient reason on its own to make an order under the Children Act, especially where it may hear conflicting expert evidence as to the efficacy or otherwise of the proposed treatment.”
This is endorsed by the CMO report which adds: “It is important to listen to the child, as well as to family members to respect their experiences and give due weight to their views, especially the child’s. The young person should be given the opportunity to speak to the clinician, with or without their parents/carers.”
Provided medical professionals are satisfied the child/young person is receiving regular medical checks from the primary care team, the management programme must be the child and family’s choice. The guidance contained in the above reports is clear. When followed, it should help to end the stress and difficulties that families face due to suspicion and misplaced allegations of abuse. Health professionals in contact with children and young people with M.E. need to be aware of this guidance, and ensure it is followed in their management of the disorder.
Guidance for professionals
A typical pattern of events is outlined below:
- concerns are raised about a child by a member of the professional team or a family member about frequent absence from school, the child/young person being withdrawn from social activities, the child/young person being unable to make contact visits with an estranged parent or other family members
- there is no firm diagnosis
- the GP is unable or unwilling to make a diagnosis and/or refer for an expert assessment
- the parents/carers don’t agree with the diagnosis given
- parents may be frightened, angry, defensive, inarticulate or nervous
- communication breaks down between the family and professionals.
If parents suspect their child has M.E., all professionals involved with the family must listen carefully to their history and consider this in the context of what they observe. As the CMO report says: “Social Services should be made aware that medical opinion in this area is divided, and consideration should be given to obtaining a further opinion from an expert medical practitioner with a specialist knowledge of CFS/M.E.”
RCPCH guidance states: “Fatigue in CFS/M.E. is post exertion (postexertional malaise) and often has a delayed onset. This means that the child/young person may present as being well and happy at school and during visits to friends and family, but may relapse significantly days after activity. Accordingly if the parents report that the child is shattered the next day or even a few days later, this should be believed unless there is direct evidence that this is not the case.”
Parents need support in obtaining a clear diagnosis of their child’s illness because this removes a lot of the worry for the child and family.
It is essential for all professionals involved to remain open-minded because M.E. is often misdiagnosed and misunderstood, even within the medical profession.
If the child’s GP is unable to support the family for any reason, please contact Action for M.E. or AYME who can signpost the professional and/or family to the nearest paediatric M.E. specialist service in England.
Sometimes the child has a confirmed diagnosis and the family wishes to manage the condition by pacing the child/young person’s activity at home, rather than the clinician’s preferred management programme.
There is no research evidence to prove that any particular management programme is more effective and the CMO and RCPCH both support patient choice.
Education Welfare Officers, Special Educational Needs Coordinators, District Nurses and other professionals involved should ask for a letter from the consultant paediatrician, GP or other medical professional responsible for the care of the child, asking for guidance about the level of activity it is reasonable to expect from the child. Following this, the level of input and support needed by the child should be agreed with the family.
Pressure is unhelpful
If parents report that the child/young person is too poorly to see a consultant or other health care professional, it is important not to immediately jump to conclusions. Visits from friends and family can be exhausting enough, professional visits are even more tiring. It is better to begin by offering support and liaise with parents/carers and make an open offer to see the child/young person when they are ready and able.
It is unhelpful to put pressure on the family, child or young person; they are already under enough pressure coping with their illness.
Within social care and education, if there is someone within the team who has knowledge and experience of working with M.E., the case should be allocated to them, with a reminder that this illness is a very individual condition and few cases are identical, especially when it comes to severely and very severely affected patients.
For the more severely affected patients, professionals could offer to organise a ‘Team around the child’ meeting to see what additional help and support can be identified. Agree any notes that are made at the meeting and provide the family with a copy if they wish.
Where there is a confirmed diagnosis, it is essential that all professionals working with the child respect and show trust in the diagnosis.
It is surprising that even where there is a diagnosis, some teachers, social workers and health care professionals still find it difficult to accept.
This leaves families repeatedly having to justify and explain the symptoms and difficulties they are experiencing.
Essential points for professionals
Before proceeding down the Child Protection route, as in any other diagnosis, professionals should consider the following points:
- if the professionals involved are unfamiliar with M.E., advice from an experienced specialist should be sought before considering any action
- what evidence is there to support Fabricated Induced Illness?
- what evidence is there that significant harm is being caused and its linkage to the actions or non-actions of parents?
- there needs to be sound evidence of harm before considering Section 47
- consider the risk of leaving FII unmanaged versus risks of CP intervention and the fact that there are risks to both
- could it be addressed in other ways?
- in weighing up relative harm, due consideration needs to be given to the loss of opportunity for therapeutic working
- once a case is in the court arena there is potential for an extended period with little or no physical or psychological progress being made. Is this really in the child/young person’s best interest?
This article has been extracted and adapted from The diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/M.E.) – child protection guidance for professionals working in health, social services and education, published by AYME and Action for M.E. with support from BBC Children in Need.
AYME offer a local rate telephone helpline from Monday–Friday, 10am – 2pm. Tel: 08451 23 23 89. Or Email.
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