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The Kennedy Report

“It is every family’s right to have their baby’s death investigated thoroughly” Baroness Helena Kennedy QC

In the early 2000s, two mothers, Sally Clark and Angela Cannings, who had been convicted of murdering their infants were subsequently released on appeal. Sally Clark’s conviction was considered unsafe due to the failure of the pathologist

conducting the post-mortem examination to disclose microbiology results; these results may or may not have been relevant to the death (R v Clark, 2003). Angela Cannings’ conviction was unsafe due to a genuine disagreement between expert witnesses, therefore guilt could not be proved beyond all reasonable doubt (R v Cannings, 2004). The incidence of SIDS had fallen dramatically in the 1990s following the recognition of the risks of prone sleeping and the ‘Reduce the Risks’ public health campaign; as a result SUDI was much rarer and child protection issues occurred in a greater proportion of cases (Blair et al., 2006). Paediatricians had begun to feel ill-equipped to manage SUDI cases and there were concerns about the overall low standards of investigation that had led to the acquittals. As a result a Working Group was established, chaired by Baroness Helena Kennedy QC, to determine new standards for investigating unexpected infant deaths; this Working Group consisted of paediatricians, pathologists, coroners, police officers and parent support groups. The Kennedy Report detailed a joint agency protocol for the management of SUDI (Royal College of Pathologists and Royal College of Paediatrics and Child Health, 2004). This protocol was based upon evidence from the CESDI SUDI study (Fleming et al., 2000) and the investigative practices for SUDI that had

30 been used in Avon for many years. However the recommendation for a history to be taken from the parents jointly by police and a paediatrician and a joint visit to the death scene were not based on published research but on expert opinion.

The Joint Agency Approach

In 2008 joint agency investigation of all unexpected child deaths following the Kennedy protocol became a legal requirement in England and Wales. Each local authority area was required to establish a Joint Agency Approach (JAA) protocol for responding rapidly to unexpected child deaths as well as a Child Death Overview Panel (CDOP) to review all child deaths in the locality. The Local Safeguarding Children Board (LSCB) is responsible for ensuring that these procedures take place. The Designated Paediatrician for Unexpected Deaths in Childhood is required to ensure that relevant professionals are notified of unexpected child deaths, to co-ordinate the JAA investigation and convene multi-agency discussions. (HM Government, 2013). (The term Designated Paediatrician for Unexpected Deaths in Childhood is used in Working Together and the West

Midlands, but other terms may be used elsewhere in England).

The aim of the JAA is to establish the complete cause of death, including any relevant risk factors and address the needs of the family; this includes the need for safeguarding procedures. The JAA tries to balance the conflicting need for forensic and medical investigation of deaths as well as supporting families (HM Government, 2013). In Working Together (HM Government, 2013) the JAA is referred to as ‘the rapid response’ and this is the term used by many SUDI professionals. I have chosen not to use this term as it is the joint nature of the investigation that distinguishes the JAA from other investigative approaches and whilst the investigation is a thorough process it is rarely rapid.

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The JAA process

The JAA is best understood in terms of the events taking place after an infant is found to have died unexpectedly at home, this description is based on practices in the West Midlands which mirror those recommended in the Kennedy Report and Working

Together to Safeguard Children. This approach is outlined in the West Midlands Protocol (West Midlands Police, 2009); the specifics of implementation may vary from place to place, both within and beyond the West Midlands. Typically when a parent telephones 999, an ambulance is dispatched and the infant along with their family should be taken to the nearest emergency department with paediatric facilities. Rarely, there may be clearly suspicious circumstances suggesting that the death was unnatural; in this event the infant may be left at the scene of death pending forensic investigation. If the infant has clearly been dead for some hours transport to the ED may be by funeral director instead of by ambulance.

The police are notified of the death either by ambulance control or by the hospital and attend immediately. At the ED, once any resuscitation has stopped, parents should be encouraged to hold and spend time with their child under the supervision of hospital or police staff.

A consultant paediatrician is expected to attend the ED and take a detailed medical history from the parents and examine the infant’s body; these activities are done jointly with a police officer from the Child Abuse Investigation Unit (CAIU). These police are specialist officers who are used to working with families and children and should have further training in managing SUDI; they also investigate cases of child abuse hence the name. Their involvement is a matter of routine and does not imply that there is anything suspicious about the death. The consultant paediatrician may be the acute general paediatrician who is on-call or a community paediatrician who attends the hospital

32 specifically to manage unexpected deaths; the tasks may be shared by hospital and community paediatricians. In some locations a specialist nurse may fulfil some or all of these roles. The term ‘SUDI paediatrician’ is used for the paediatrician or specialist nurse managing the death regardless of their background.

There needs to be an examination of the environment where the death occurred, by the CAIU police and SUDI paediatrician; this is done as a joint home visit (JHV) with the parents showing the exact sleeping arrangements. These include detailing the position the baby was put to bed in and found in; the type of bedding and clothing and how the bedding was found in relation to the baby. The position of any co-sleeping adults or other children is also recorded. Some police forces use Scenes of Crime Officers (SOCO) to take video recordings or photographs of the death scene. In the UK, dolls are typically not used to reconstruct sleep scenes although this is common practice in other

countries. The JHV is also a chance for any further history to be clarified, particularly if there has been a handover of the case between paediatricians, and for the home circumstances to be assessed. Ideally, the JHV is done as soon as the parents leave the hospital but this may not be possible if the SUDI paediatrician has other clinical

commitments. If there is any delay the CAIU police need to ensure that the parents can access their home or collect any possessions they need in the interim. The JHV should be completed within 48 hours of the death.

The infant will require a post-mortem examination; this is usually done by a paediatric pathologist following the detailed protocol in the Kennedy Report. The pathologist will be sent copies of the SUDI paediatrician’s history and examination as well as the report from the JHV. If there are any criminal concerns the post-mortem will be conducted jointly by a forensic and paediatric pathologist.

33 There is an initial multi-agency discussion about the case; for uncomplicated deaths this may be done by telephone alone but more often it is a formal meeting. The meeting is usually chaired by the SUDI paediatrician and attended by CAIU police, a social worker, the family’s General Practitioner (GP) and the health visitor (HV). All relevant

background information on the family is shared and plans are made about which further actions are needed and who should do these; this includes identifying who is best placed to support the family. If significant safeguarding concerns arise at this stage the meeting may become a formal child safeguarding Section 47 Strategy Meeting; chaired by social care as described in chapter one of Working Together (HM Government, 2013).

Once all investigations are complete the final case discussion is held; this is usually at least 4 months after the death due to the time required for histological examination of post-mortem specimens. The case discussion often takes place at the GP surgery but may be held elsewhere, and is chaired by the SUDI paediatrician. It should be attended by the same key personnel as at the initial case discussion. Ideally, the pathologist should be present but if this is not possible the SUDI paediatrician should clarify any issues regarding the post-mortem examination report with the pathologist before the review meeting. The case discussion should determine as far as possible the cause of death; considering whether the investigations have determined a cause of death or the death remains unexplained. All potential risk factors should be discussed including any child safeguarding concerns. A follow-up plan for the family is made, usually the SUDI paediatrician visits the parents at home to discuss the cause of death and any other matters arising from the case discussion but for some families the GP or another paediatrician may do this instead. A written summary of the meeting is sent to the parents and a copy should be given to the parents’ GP to ensure that there is a permanent notification of the infant’s death in the parents’ health records.

34 The process of the JAA is summarised in figure 1 and the key personnel in table 1.

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Table 1 Professionals involved in the JAA

Professional Agency Role Designated

Doctor for Unexpected Deaths in Childhood

Health Consultant paediatrician with responsibility to co-ordinate the multi-agency team of professionals required to investigate unexpected child deaths.

May carry out the role of SUDI paediatrician for some cases.

SUDI

paediatrician

Health Consultant paediatrician who attends ED in the event of a SUDI, takes a complete history with the police from the parents, visits the home to see the scene of death with the police, and chairs the initial and final case discussion. This role may be taken by a hospital paediatrician or community paediatrician or shared.

SUDI specialist nurse

Health To support the Designated Doctor or SUDI paediatrician; in some locations may carry out the role of SUDI paediatrician

Senior Investigating Officer

Police Officer of at least Detective Inspector rank from specialist Child Abuse Investigation Unit takes a complete history with the SUDI paediatrician from the parents, visits the home to see the scene of death with the SUDI

paediatrician, attends initial and final case discussions.

Social Worker

Social Care

Attend initial and final case discussions; address any child protection concerns

Child Death Co-ordinator

Variable Organise case discussions; minute meetings, collect autopsy reports and other relevant information.

If at any point in the JAA there are suspicions that the death may not be due to natural causes the police take the lead in the investigation and the JAA may stop; this is to ensure that any enquires do not prejudice any potential criminal proceedings.

The Coroner

The JAA is a separate process from coroners’ enquiries; the coroner is required to investigate any unexpected death. The hospital and police notify the coroner of any unexpected infant death and the coroner will request the post-mortem examination. The police investigation is on the behalf of the coroner unless it becomes clear that a crime is being investigated. It is expected that the coroner and JAA professionals share information with each other to assist in the investigation into unexpected child deaths (HM Government, 2013) and in some areas coroner’s officers attend final case

36 SUDI cases even if there are no suspicious features while others are content with the reports from the SUDI paediatrician and CAIU police officers. At the time of the study all SUDI cases had inquests although with the implementation of more recent coroners’ rules this is no longer necessary (HM Government, 2009).

The Child Death Overview Panel

Child Death Overview Panels (CDOP) were established in 2008 along with the

introduction of the JAA, CDOPs review all child deaths from birth to a child’s eighteenth birthday regardless of whether the death was unexpected or not. CDOPs consist of a multi-agency group of professionals who review all child deaths in their local area to learn lessons about child deaths with the aim of being able to prevent similar deaths in the future, this is achieved by categorising deaths and identifying relevant modifiable factors The CDOP process does not seek to establish the cause of death, this is the role of the coroner assisted by information from the JAA. CDOP is a statutory process overseen by the LSCB; cases are reviewed in an anonymised form, usually several months after the death. CDOP review all child deaths in a locality, SUDI cases only account for a small proportion of their caseload.

CDOP is therefore a relatively new process in England although child death review has been practised for many years in New Zealand, Australia and the USA (Fraser et al., 2014). A confidential enquiry into child deaths, in 2006, prior to the introduction of the CDOP process showed that the majority of child deaths were preventable or potentially preventable, this was also true for half of death that were not unexpected. Lack of recognition of serious illness, failure to follow-up patients and poor coordination of care were common short-comings (Pearson, 2008).

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The West Midlands JAA

The research study took place in the greater West Midlands region; covering the counties of Herefordshire, Shropshire, Staffordshire, Warwickshire, West Midlands, Worcestershire. These are shown in figures 2 and 3.

Figure 2 Map of West Midlands region

Figure 3 Map of counties of West Midlands region

The West Midlands has a population of 5.6 million people, and covers 13,000 square km. There are some densely populated cities with areas of marked social deprivation as well as rural areas. It has 11 local authorities, 14 hospitals with one specialist children’s hospital, seven coroners, three police forces, and ten Child Death Overview Panels. The

38 infant mortality rate is 5.3 per 1000 live births which is the highest in England (Office for National Statistics, 2014a).

The West Midlands has one JAA SUDI protocol (West Midlands Police, 2009) although its implementation varies in each location. The role of the SUDI paediatrician may be carried out entirely by acute hospital paediatricians, by community paediatricians, or the tasks may be shared between them. Not all areas had specialist nurses; their role varies from working alongside SUDI paediatricians to performing all the roles of the SUDI paediatrician.

All the police forces have specialist CAIU teams; although these worked mainly in office hours there were always senior officers on-call and available for unexpected child deaths out of hours.

Evidence for the use of the Joint Agency Approach

As discussed previously, the JAA is based on the Kennedy report which was a consensus of expert opinions, representing the many professionals involved in SUDI as well as bereaved parents. There has been little research evaluating the use of the JAA in terms of its effectiveness in determining cause of death, risk factors or supporting parents. A case-control study of SIDS in the south-west of England used a JAA to investigate SUDI; this showed good compliance with procedures. However there was a dedicated research team to investigate cases and support local health care professionals (Sidebotham et al., 2010). Of the 157 SUDI cases in the study, 67 (43%) had a causal explanation found and 90 (57%) remained unexplained and were classified as SIDS (Blair et al., 2009). In comparison, the CESDI study, ten years earlier had diagnostic rates of 20% (Fleming et al., 2000) relying on post-mortem examination, death scene analysis by non-specialist police and variable amounts of clinical history. Some of the variation in

39 diagnostic rates relates to changes in post-mortem examinations and ancillary

investigations rather than the overall investigative process. An audit of the JAA in Birmingham, West Midlands, showed good compliance with procedures; in this situation however the JAA was performed by local NHS clinicians rather than an expert team (Garstang et al., 2013). There is no published evidence of parental experiences of the JAA.

This chapter has explained the process of the JAA investigations following SUDI and outlined the key events and actions that professionals need to undertake. The next chapter considers the viewpoint of bereaved parents and what they actually want from professionals after the sudden death of a child.

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Chapter two Literature Review – what do bereaved parents want

from professionals after the sudden death of their child?