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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.