How can you tell

Are paediatricians and social workers on the
same wavelength when it comes to deciding whether children have
been the subjects of an induced illness, as opposed to suffering
from a genuine one? Rachel Downey examines the difficulties posed
by Munchausen’s syndrome by proxy and how professionals can protect
children from it.

The idea that a parent would deliberately
induce or fabricate an illness in their child is hard to fathom.
That they would then repeatedly present the child to doctors
appearing to seek treatment makes their behaviour even more
unbelievable. But that is what those suffering from Munchausen’s
syndrome by proxy do.

It is one of the most complex and difficult
conditions for health and social care professionals to tackle. And
the difficulties have been made worse by controversy surrounding
the detection of the condition, also described as fabricated or
induced illness, in the UK.

High court injunctions, allegations of
conspiracy, senior paediatricians’ reputations placed on the line,
parents being secretly filmed abusing their children in hospital,
and mothers standing outside medical conferences with empty
pushchairs all play a part in the highly divisive drama which has
surrounded MSBP. The medical journals have bustled with claims and
counter-claims. The Department of Health has been forced to admit
that one inquiry into a leading paediatrician’s work in the field
was wrong in parts. And standing in the middle of this medical
minefield are social workers.

However, an uneasy calm appears to have
settled over these highly troubled waters as a result of guidelines
from the DoH, consultation on which ended last month.¹
These draft guidelines emphasise the need for a multi-agency
approach and recommend that the investigation of MSBP cases should
be viewed in the same way as other child abuse investigations.

This emphasis may reflect a subtle shift
taking place within the sector in response to concerns that “high
status” referrers – such as paediatricians – are dominating
decisions in MSBP cases. Some groups involved in the consultation
argued that social workers, because they are not medically trained,
lack the confidence to challenge a consultant paediatrician who
wants to initiate care proceedings because they suspect a parent is
deliberately harming their child.

The draft guidelines propose a wider, more
holistic approach to assessment. Social services will have the lead
responsibility for co-ordinating strategy meetings, and assessment
of children in need and their families should be carried out via
the normal child protection framework.

Ian Johnston, director of the British
Association of Social Workers, welcomes the guidelines’ emphasis on
the role of social work, arguing that detection of abuse “should be
second nature to social workers and less so to medical staff”.

But Andrew Webb, a member of the Association
of Directors of Social Services children and families committee,
believes the guidelines merely “set out for all professionals a
code to follow about weighing up potential harm”, putting “what was
seen as a highly technical process in a wider context”.

Webb also maintains there is no hierarchy of
views at decision-making meetings. “When it comes to the strategy
meeting, you make some presumptions about all the professionals
being there and contributing in good faith from the best position
of understanding of the medical evidence. Medical experts should
both advance their views and argue the other side of the coin. You
canvas them and push them to come up with evidence, because if you
are the considering the care proceedings route, you have to be
clear about the strength of evidence.”

However the Royal College of Paediatricians
and Child Health’s (RCPCH) own guidelines on MSBP, published last
month,² appears to see a need to reinforce the
importance of the social worker input from the outset. It suggests
that doctors are finalising their own views before social workers
begin to assess families.

“Paediatricians are concerned about the
concept of a threshold for referral to social services departments.
Some social workers and police believe that paediatricians will not
make a referral until they are virtually certain that there is
fabrication or illness induction.” The result is long stays in
hospital, which are damaging to the child.

The British Association for the Prevention and
Study of Child Abuse (Bapscan) is also concerned that the balance
between the rights of the child and the rights of parents is
tipping in favour of parents. It is calling for explicit guidance
about sharing information. Jonathan Picken, a member of Bapscan’s
national executive committee, says: “There are a small number of
families where we cannot always apply the same principles of
partnership – a small number of parents who can be very
manipulative. We do not want to suggest that we ride roughshod over
parents’ rights but we must keep reminding people that children’s
welfare is paramount.”

But these guidelines have so far failed to
resolve the issue of false allegations or misdiagnosis of MSBP. Two
conditions in which MSPB can seem a possible factor are ME and
autism. Campaigners wanted the guidelines to include a recognition
that false allegations do occur.

Jill Moss, director of the Association of
Young People with ME (Ayme), estimates that 15 to 20 per cent of
case conferences hear suspicions of MSBP or emotional abuse even if
they are quickly dismissed. The organisation deals with about six
to eight cases of ME a year which lead to child protection
registration – about two a year result in care proceedings – when
in fact the children have ME. “The numbers are small but the impact
that this has on families is massive. It’s borne out of
non-understanding of an illness.”

The RCPCH guidance states that “in complex
disorders like chronic fatigue syndrome there’s a risk that
differences of opinion can lead to the suspicions of fabricated
illness”. Nigel Speight, consultant paediatrician at the University
Hospital in Durham, has been involved in 13 cases of ME which have
been wrongly diagnosed as MSBP. Speight, who was a member of the
chief medical officer’s recent working party on ME and the RCPCH
working party on MSBP, says social workers should use their
judgement in these cases. Most social workers usually just follow
instructions from their paediatric colleagues.

“Beware of listening to just one school of
medical thought,” Speight counsels. “Beware of the fact that ME
drives professionals mad and people cannot tolerate the child not
getting better. Look at the functioning of the family before the
child became ill. Reluctance to co-operate with one school of
medical thought should not be regarded as evidence of abuse.”

Jill Moss is hopeful that the report from the
chief medical officer on ME, expected imminently, will put an end
to misdiagnosis of MSBP as it says the latter has no part to play
in ME. But the National Autistic Society (NAS) is warning that if
the draft RCPCH guidelines on MSBP are not fundamentally altered an
“epidemic of MSBP and actions similar to Cleveland” will ensue. “A
huge responsibility is placed on social services staff by this
guidance and yet they cannot be qualified to recognise the wide
range of conditions which might affect a child and which must be
ruled out before this `extremely rare form of child abuse is
suspected,” it states.

The NAS wants the “checklists” in the draft
guidance removed, saying they are classic pointers of autistic
spectrum disorder (see box). It wants a full developmental history
carried out to rule out developmental disorders such as autism;
awareness training for practitioners, particularly social workers,
area child protection committees, and the police. The NAS hopes
that a meeting with health minister Jacqui Smith will ensure
changes are made.

But while the NAS and Ayme are concerned about
misdiagnosis, one of the most contentious issues remains the
methods used to gain concrete evidence of MSBP. Secretly filming
parents shows that some will attempt to injure and in some cases,
kill their children while in hospital. But the field is divided as
to whether covert video surveillance is an acceptable method of
obtaining evidence.

The new DoH guidelines were produced in
response to a request from a panel set up to evaluate the research
into MSBP by David Southall, a consultant paediatrician at North
Staffordshire hospital. His research covered a period of eight
years in which 39 parents suspected of abuse were covertly filmed
in hospital. All but one were caught on camera attempting to harm
their children. A total of 33 parents or step-parents were
prosecuted and children placed in care.

But this controversial method of detecting
abuse sparked ferocious criticism. A campaign group was formed,
complaints made, and Southall and a colleague were suspended while
the North Staffordshire Hospital NHS Trust began an investigation.
Meanwhile, Southall was also being investigated by the DoH and the
General Medical Council for involvement in trials of a new
ventilator for premature babies, after parents claimed they did not
give their permission for the trials. He was reinstated in October
when the trust said there had been no professional misconduct or
incompetence and no evidence to suggest inappropriate use of covert
video surveillance.

Ian Johnston, director of BASW, says parents
should be told they are being recorded. But Andrew Webb finds no
problem with using covert video surveillance “as long as it is not
setting up to entrap people and as long as the child’s safety is
protected”. In one instance a child’s arm was broken. “It needs to
remain in the tool kit.”

Johnston maintains there are other ways of
protecting the child by “making sure we are alert to possible signs
of unacceptable behaviour”. Terry Thomas, reader in social work at
Leeds Metropolitan University and an expert on the use of covert
video surveillance, agrees. He argues that the fact that, in David
Southall’s study, 38 of 39 suspected MSBP parents were caught on
film harming their child suggests that the evidence was already
there for people to see, without anyone having to resort to
surveillance. He describes the way covert video surveillance has
been used by paediatricians in these cases as “vindictive and
nasty”.

The DoH guidelines state that the police
should take the lead in co-ordinating the use of covert video
surveillance – a move welcomed by both sides of the ethical debate.
Thomas says this will “stop doctors playing policemen”. The use of
CVS, already low in these cases, is expected to continue to fall,
partly as a result of the impact of the Regulation of Investigatory
Powers Act 2000, which regulates police surveillance.

The new guidelines on MSBP may have provided a
clearer pathway for social workers through this contentious area,
but campaigners who raised concerns about the way in which MSBP was
being handled remain uneasy. Only a public inquiry will reassure
them.

¹ DoH, Safeguarding
Children in whom Illness is Induced or Fabricated by Carers with
Parenting Responsibilities, DoH, Home Office, DfES,
2001

² RCPCH, Guidance on
fabricated illness from the Royal College of Paediatrics and Child
Health from www.rcpch.ac.uk (not yet available in paper form),
2001

What is Munchausen’s by proxy?

It’s rare. An estimated 0.5 per 100,000
children under 16 and 2.8 per 100,000 under one year suffer from
non-accidental poisoning and non-accidental suffocation in the UK
and the Republic of Ireland. These figures are taken from study in
1996 of 128 cases notified to the British Paediatric Association
Surveillance Unit in the two years to August 1994.¹

Crucial is the fact that the mother – in 89
per cent of cases, it is the mother – presents her child repeatedly
to medical professionals for help. The most common presentations
are bleeding, seizures, central nervous depression, diarrhoea,
vomiting, fever and rash.² The most immediately
dangerous forms are when a mother smothers or poisons her child,
according to a 1990 study.³

¹ RJ McClure, PM Davis, SR
Meadow and JT Sibert, Archives of Disease in Childhood.
Vol 75, 57-61. 1994

² Rosenberg DA, “Web of
deceit: a literature review of Munchausen syndrome by proxy”,
Child Abuse and Neglect, 1990; 14 (2): 28 September,
1990

³ C Bools, B Neale, R
Meadow, Munchausen Syndrome by Proxy: Study of
Psychopathology, 1990

DoH draft guidance

Child welfare concerns might arise when:

– Reported symptoms and signs are not
explained by any medical condition.

– Physical examination and investigation
results do not explain reported symptoms and signs.

– Inexplicably poor response to medication or
other treatment.

– New symptoms reported on resolution of
previous ones.

– The child’s normal activities are being
curtailed beyond what would be expected for any known medical
disorder.

Specific problems that may occur as a result
of the abuse

– Delay in speech, language or motor
development.

– Development of feeding disorders.

– Dislike of close physical contact or
cuddling.

– Development of attachment disorders.

– Low self-esteem.

– Having no or poor quality relationships with
peers.

– Under-achievement at school.

– Abnormal attitudes to their own health.