11.1 Sussex Child Death Review Practice Guidance
Show amendments
Last reveiwed Feb 2020
Date of next review Feb 2022
Contents
- Introduction(Jump to)
- Background(Jump to)
- 3. Legislative Framework / Core Standards(Jump to)
- 4. Scope and purpose of this guidance(Jump to)
- Definitions(Jump to)
- 6. Roles and Responsibilities(Jump to)
- 6.1. The Child Death Review Team(Jump to)
- Child Death Processes in Sussex – Operational guidance(Jump to)
- Expected Deaths(Jump to)
- Immediate actions following unexpected child deaths(Jump to)
- Agency Response (JAR)(Jump to)
- Factors which may arouse suspicion(Jump to)
- Suicide/Suspected Self-harm(Jump to)
- General Advice for Professionals when Dealing with the Family Following an Unexpected Death:(Jump to)
- Hospital Staff(Jump to)
- Initial action at the scene(Jump to)
- The Scene(Jump to)
- Away from the scene(Jump to)
- Assessment of the environment and circumstances of the death (joint home/ scene visit)(Jump to)
- The Post-mortem examination (PM)(Jump to)
- Discussion/Meeting following Post Mortem(Jump to)
- Child Death Review Meeting (CDRM) for all child deaths(Jump to)
- Child Death Overview Panel (CDOP)(Jump to)
- Themed CDOP panels(Jump to)
- Themed CDOP panels(Jump to)
- Learning Disabilities Mortality Review (LeDeR)(Jump to)
- Family engagement and Bereavement support(Jump to)
- Bibliography(Jump to)
- JAR Flowchart(Jump to)
- Joint Agency Response to Child Deaths Initial Information Sharing and Planning (IISP) Meeting Minutes Template(Jump to)
- Unexpected Death Hospital Pro forma(Jump to)
Introduction
11.1.1 | The Sussex Joint Agency Protocol for Unexpected Child Deaths, was originally published in 1999. This latest version covers expected and unexpected deaths and takes account of "Sudden Unexpected Death in Infancy" published in November 2016 by the Royal College of Pathologists and endorsed by the Royal College of Paediatrics and Child Health, and the statutory guidance in Working Together to Safeguard Children, HM Government 2018. These reports contain further detail on this subject and recommendations relating to the investigation of such deaths. These documents can be accessed via Royal College websites: Royal College of Paediatrics and Child Health or The Royal College of Pathologists and Department of Health respectively. |
11.1.2 | This document has been developed using the Surrey Child Death Review Policy 2019, previous Sussex child death guidance and all statutory guidance for Child Death Reviews to form the new Sussex Child Death Review Process which has been in effect of October 2019. We kindly acknowledge the Surrey Child Death team for their support. |
Background
11.1.3 | The death of a child is a devastating loss that profoundly affects bereaved parents as well as siblings, grandparents, extended family, friends and professionals who were involved in caring for the child in any capacity. Families experiencing such a tragedy should be met with empathy and compassion. They need clear and sensitive communication. They also need to understand what happened to their child and know that people will learn from what happened. The process of expertly reviewing all children’s deaths is grounded in deep respect for the rights of children and their families, with the intention of preventing future child deaths. |
11.1.4 | In 2015, the government commissioned Sir Alan Wood to review the role and functions of Local Safeguarding Children Boards (LSCBs). The Wood Report was published in March 2016, with the government formally responding in May 2016. The Wood Report recommendations were subsequently embedded in statute in April 2017 with the granting of Royal Assent to the Children and Social Work Act 2017. |
11.1.5 | Under the Children Act 2004, as amended by the Children and Social Work Act 2017, the two child death review partners (local authorities and clinical commissioning groups) must set up child death review arrangements to review all deaths of children normally resident in the local area and, if they consider it appropriate, for any non-resident child who has died in their area. |
11.1.6 | The child death review partners must make arrangements for the analysis of information from all deaths reviewed. The purpose of a review and analysis is to identify any matters relating to the death, or deaths, that are relevant to the welfare of children in the area or to public health and safety, and to consider whether action should be taken in relation to any matters identified. |
11.1.7 | If child death review partners find action/s should be taken by a person or organisation, they must inform them
|
11.1.8 | This guidance is intended to be used by any agency involved in the death of a child. |
3. Legislative Framework / Core Standards
11.1.9 | The corporate responsibilities for child death reviews are explicit and are predominantly informed by legislation and national directives. The Sussex Child Death Review Partnership is required to fulfil its legal duties under the Children Act 2004, as amended by the Children and Social Work Act 2017. |
11.1.10 | The following key guidance and legislation informs how the Child Death Review Partnership will discharge its function and duties to set up child death review arrangements to review all deaths of children normally resident in the local area and, if they consider it appropriate, for any non-resident child who has died in their area |
11.1.11 | This policy sets out arrangements for undertaking child death reviews in Sussex. It should be read in conjunction with the following:
|
4. Scope and purpose of this guidance
11.1.12 | This guidance aims to set out the processes to be followed when responding to, investigating, and reviewing the death of any child, from any cause. It runs from confirmation of a child’s death to the completion of the review by the Child Death Overview Panel (CDOP). This includes the immediate actions that should be taken after a child’s death; the local review of a child’s death by those who interacted with the child during life, and with the investigation after the child’s death; through to the final stage of the child death review process which is the statutory review arranged by child death review |
11.1.13 | This guidance clarifies processes and sets out principles for how the child death review team involved in the child death review process should work together with other key partners to meet the two main objectives
|
11.1.14 | This guidance is applicable to all Healthcare providers, Sussex Police, Local Authority and CCG staff (permanent and temporary) who care for children, or who have a role in the child death review |
11.1.15 | This policy should be seen as complimentary to arrangments set out in 11.1.11. |
11.1.16 | This policy does not cover the Safeguarding policies and procedures as this is covered within the Pan-Sussex procedures. |
Definitions
11.1.17 | For the purpose of this document, a child is defined in the Children Act as a person under 18 years of age. |
11.1.18 | For the purpose of this document, stillbirth is a baby born without signs of life after 24 weeks gestation. |
11.1.19 | For the purpose of this document, late foetal loss is where a pregnancy ends before 24 weeks gestation without signs of life. |
11.1.20 | Unexpected death is a death (or collapse leading to death) of a child, which would not have been reasonably expected to occur 24 hours previously and in whom no pre-existing medical cause of death is apparent. This is a descriptive term used at the point of presentation, and will include those deaths for which a cause is ultimately found (‘explained SUDI/SUDC’) and those that remain unexplained following investigation. In dealing with an unexpected collapse it is important to remember that even if a child survives for several days following a collapse before dying from an identifiable cause, a multi-agency response to the death may still be required if initial collapse was not anticipated within the previous 24 hours. |
11.1.21 | Child Death Review (CDR) is the process to be followed when responding to, investigating, and reviewing the death of any child under the age of 18, from any cause. It runs from the moment of a child’s death to the completion of the review by the Child Death Overview Panel (CDOP). The process is designed to capture the expertise and thoughts of all individuals who have interacted with the case in order to learn lessons and share any findings for the prevention of future deaths. |
11.1.22 | eCDOP is a secure web-based solution which is accessible 24/7 and enables practitioners to promptly submit child death information thereby allowing Sussex CDR processes to be managed efficiently, with effective sharing of multi-agency information. |
11.1.23 | Joint Agency Response (JAR) is a coordinated multi-agency response by the lead health professional, police investigator, duty social worker and should be triggered if a child’s death:
A Joint Agency Response should also be triggered if such children are brought to hospital near death, are successfully resuscitated, but are expected to die in the following days. |
11.1.24 | Child Death Review Meeting (CDRM) is a multi-professional, multi-dimensional meeting where all matters relating to an individual child’s death are discussed by the professionals directly involved in the care of that child during life and their investigation after death. This meeting is held for expected and unexpected child deaths. |
11.1.25 | Child Death Overview Panel (CDOP) is a multi-agency panel set up by Child death review (CDR) partners to review the deaths of all children normally resident in their area, and, if appropriate and agreed between CDR partners, the deaths in their area of non-resident children, in order to learn lessons and share any findings for the prevention of future deaths. This review should be informed by a standardised report (analysis form) from the CDRM, and ensures independent, multi-agency scrutiny by senior professionals with no named responsibility for the child’s care during |
6. Roles and Responsibilities
11.1.26 | The Sussex local authorities and NHS Sussex CCG’s are the statutory partners responsible for the child death review processes. Other agencies, in particular police and education, should work in partnership with them to undertake these responsibilities. |
6.1. The Child Death Review Team
11.1.27 | A. Designated Doctor for Child Death Reviews The Designated Doctor is a senior paediatrician who has the following responsibilities:
Adult services caring for children: The Designated Doctor for child deaths should be notified when a child dies in adult ICU or other adult services. The designated doctor can provide a central role in terms of:
|
11.1.28 | B. Child Death Review Lead Nurse
|
11.1.29 | c. Child Death Review Specialist Nurses and Child Death Review Support Nurses
|
11.1.30 | d. Child Death Review Co-ordinator The responsibilities of the co-ordinator role include but are not exclusive to the following:
|
11.1.31 | e. All Staff
|
Child Death Processes in Sussex – Operational guidance
11.1.32 | A child death review must be carried out for all children regardless of the cause of death. This includes the death of any live-born baby where a death certificate has been issued. In the event that the birth is not attended by a healthcare professional, child death review partners may carry out initial enquiries to determine whether or not the baby was born alive. If these enquiries determine that the baby was born alive the death must be reviewed. For the avoidance of doubt, it does not include stillbirths, late foetal loss, or terminations of pregnancy (of any gestation) carried out within the law. Cases where there is a live birth after a planned termination of pregnancy carried out within the law are not subject to a child death review |
11.1.33 | The child death reveiw flowchart sets out the main stages of the child death review process. |
11.1.34 | After immediate decisions have been taken and notifications made, a number of investigations may then follow. They will vary depending on the circumstances of the case, and may run in parallel. The learning from investigations will inform the CDRM and independent review by CDR partners at |
11.1.35 | Alongside this, essential information needs to be gathered for all child deaths. This includes demographic data, and information relating to the circumstances of death and background medical history. This information should be reported to Sussex CDOP via the Reporting Form, or, for deaths of babies in neonatal units via the Perinatal Mortality Review |
Expected Deaths
11.1.36 | Notification of the child death should be made to the Child Death Review (CDR) team via Sussex online eCDOP Notification and Child Health Information System who will make notifications to the child’s GP and other professionals. |
11.1.37 | All expected deaths should be discussed with the Coroner before completing a Medical Certificate of Cause of Death (MCCD). |
11.1.38 | When a child with a known life limiting and or life threatening condition dies in a manner or at a time that was not anticipated, the lead health professional and child death team should liaise closely and promptly with a member of the medical, palliative or end of life care team who knows the child and family, to jointly determine how best to respond to that child's death. If there are concerns that the death was premature or unusual this may trigger a JAR. Advice can be sought from the coroner or the child death designated doctor/nursing team. |
11.1.39 | On receipt of the notification of a child death, the child’s paediatrician(s) and/or the CDR specialist nurse will liaise with the lead health professional to support the health response to the child death and ensure that all health responses are implemented. |
11.1.40 | All expected deaths need to be reviewed at a CDRM. |
Immediate actions following unexpected child deaths
11.1.41 | Following a child’s death, immediate actions need to be taken such as notification of death, and deciding whether other investigations are warranted. In practice, the majority of such discussions will happen in a clinical setting, but may require input from other agencies in certain cases. |
11.1.42 | Within 1-2 hours if possible, senior professionals with responsibility for the child at the end of his/her life (usually the paediatricians in the acute hospital which confirms the death) should as a minimum: Convene an Immediate Planning Discussion This will include (as a minimum) the lead health professional, and lead police investigator. This should ideally take place before the family leave the emergency department. Input from Children’s Services and the ambulance crew involved in the transfer to hospital is desirable. If these professionals are not able to attend a face to face discussion then their contribution may need to be telephone based. This Immediate Planning Discussion (IPD) should:
If at any stage concerns are raised that abuse or neglect may have contributed to the infant/child’s death or significant concerns emerge about safeguarding issues, an initial multi-agency strategy discussion should be organised. In these cases the police will normally take the lead in investigating the death and the joint agency response should be adapted to take account of the safeguarding enquiries and police investigation. |
11.1.43 | In all deaths, these discussions should be recorded in medical notes and the outcome of these discussions should also be fed back to the family. (For template for this discussion, please see Appendix 3 of the Child Death Review Statutory and Operational Guidance (England) |
11.1.44 | Notification of the child death should be made to the Child Death Review (CDR) team via Sussex online eCDOP Notification and Child Health Information System who will make notifications to the child’s GP and other professionals. |
11.1.45 | If the death is unexpected a notification to MASH (west Sussex), SPoA (East Sussex) or FDFF (Brighton & Hove) should completed as a matter of urgency so that the joint agency response process can be initiated and an initial information sharing and planning meeting arranged. |
11.1.46 | The Coroner:
|
11.1.47 | When a child with a known life limiting and or life threatening condition dies in a manner or at a time that was not anticipated, the lead health professional and child death team should liaise closely and promptly with a member of the medical, palliative or end of life care team who knows the child and family, to jointly determine how best to respond to that child's death. This should include consideration of whether the child's body should be transferred to a hospital or hospice, and whether any investigations or inquiries are required. Where an end of life plan has been agreed by the end of life care team and is in place, this should be followed unless there are pressing reasons not to do so. For example, the coroner decides where the child's body may be taken and this decision may be different to what was set out in the family's prepared plan.
|
Agency Response (JAR)
11.1.48 |
|
11.1.49 | All deceased children that meet the criteria for a JAR should be transferred to the nearest appropriate Emergency Department (ED) to enable the JAR to be triggered. |
11.1.50 | A JAR should be triggered if a child’s death:
|
11.1.51 | When dealing with an unexpected child death all agencies need to follow five principles:
All of these are of equal importance |
11.1.52 | The aims of the JAR response are to:
|
11.1.53 | In any of these circumstances, the child death review nurse team, police investigator, lead health professional and duty social worker should be contacted immediately to initiate the JAR. Once alerted, the child death review specialist nurse (if within normal working hours) and police investigator will attend ED. |
11.1.54 | A JAR should also be triggered if such children are brought to hospital near death, are successfully resuscitated, but are expected to die in the following days. |
11.1.55 | In such circumstances the JAR should be considered at the point of presentation and not at the moment of death, since this enables an accurate history of events to be taken and, if necessary, a ‘scene of collapse’ visit to occur. |
11.1.56 | Appropriate clinical investigations (commonly referred to as the Kennedy samples) should also be performed in these cases. The paediatrician should endeavour to examine the child’s (particularly infants) eyes with an ophthalmoscope, however the findings of this merely guide the ‘investigation’ and cannot be used as evidence in legal proceedings. If there are concerns there may be traumatic injuries to the eyes (retinal haemorrhages etc) the Police will need to arrange a forensic post-mortem examination. |
11.1.57 | Effective inter-agency working is key to the investigation of such deaths and to supporting the family, and requires all professionals to keep each other informed, to share relevant information between agencies, and to work collaboratively. |
11.1.58 | The CDR nurse and senior paediatrician/lead health professional will ensure that all health responses are implemented, and be responsible for on-going liaison with the police and other agencies |
11.1.59 | The local children’s services (CSC), in the area where the child is usually a resident, should be notified and will arrange and chair an initial information sharing and planning meeting (IISPM). The JAR flow chart sets out the sequence of events that should unfold in a JAR. |
11.1.60 | Certain factors in the history or examination of the child may give rise to concerns about the circumstances of death. If such factors are identified, they should be documented and shared with the coroner and professionals in other key agencies. All injuries should be recorded and the lead police investigator should arrange a photographic record |
11.1.61 | An Initial Information Sharing and Planning Meeting (IISPM) should be held as soon as possible after the death. This meeting:
|
11.1.62 | In circumstances where a child has died, and abuse or neglect is known or suspected, professionals at the initial information-sharing and planning meeting should notify the safeguarding partners whose responsibility it is to determine whether the case meets criteria for a child safeguarding practice Please refer to rapid review guidance or contact the relevant Head of Safeguarding. |
11.1.63 | The lead health professional/CDR specialist nurse should ensure that all relevant professionals and organisations are informed of the infant’s death, including the coroner, the GP and health visitor or midwife, the child health computer system and Sussex CDOP via eCDOP. |
11.1.64 | There are some types of deaths, which fall under the jurisdiction of a specific arm of the police force e.g. Road Traffic Collision Unit or British Transport Police. In such situations, the police/CSC with support from the designated doctor/CDR specialist nurse should ensure that there is a co-ordinated approach with other elements of the JAR, and any report arising from their investigation informs the wider child death review process. |
Factors which may arouse suspicion
11.1.65 |
Two or more unexplained child deaths occurring within the same family is unusual and should raise questions both about an underlying medical or genetic condition as well as possible unnatural events.
Unexplained bruising, burns, bite marks on the dead child or a previous history of these injuries should cause serious concern. A child may have no external evidence of trauma but have serious internal injuries. Observations about the condition of the accommodation, cleanliness, adequacy of clothing, bedding and the temperature of the environment in which the child is found are important. A history of previous concerns about neglect may be relevant.
The account given by the parents or carers of the circumstances of the child's death should be documented verbatim. Inconsistencies in the story given on different occasions or to different professionals should raise suspicion, although it is important to be aware that inconsistencies may occur as a result of the shock and trauma of the death.
The presence of blood must be carefully noted and recorded. A pinkish frothy residue around the nose or mouth may be found in some children whose deaths are due to Sudden Infant Death Syndrome. Fresh blood from the nose or mouth is uncommon, and should lead to the consideration of possible maltreatment. |
Suicide/Suspected Self-harm
11.1.66 | Child suicide should be reviewed in the same manner as other child deaths, with the following expectations:
|
11.1.67 |
|
11.1.68 | Suspected child suicides should, where possible, be discussed at a themed specialist CDOP review with attendant mental health specialists |
General Advice for Professionals when Dealing with the Family Following an Unexpected Death:
11.1.69 |
|
Hospital Staff
11.1.70 |
|
Initial action at the scene
11.1.71 | Ambulance Staff:
The reason for this is to enable the process for investigating the cause of death to start as soon as possible after the event. It has been shown that cell and tissue deterioration occurs extremely quickly in children and this can have a dramatic effect on whether a definitive cause of death can be found. This, of course, must be dealt with as sensitively as possible.
In these circumstances the crew should:
|
11.1.72 | Police Staff: The provision of medical assistance to the child is obviously the first priority. If an ambulance is not present ensure one is called immediately, and consider attempting to revive the child unless it is absolutely clear that the child has been dead for some time. Ensure that the Detective Inspector (DI)/Detective Sergeant (DS) is informed of any resuscitation attempts in order that they can inform the pathologist. The first officer at the scene must make a visual check of the child and his/her surroundings, noting any obvious signs of injury. Handle the child as if he or she were alive; ascertain and use the child's name whenever referring to the child. Normally the first officer attending the scene will be responding to an emergency call relating to a child's death. This officer will assume control of the situation being mindful of the sensitivity of the situation and ensure that the appropriate following specialist officers are contacted and attend:
|
The Scene
11.1.73 |
Consideration should be given to:
The above is NOT an exhaustive list of considerations and should be treated only as a guide. They will not be necessary in every case. Refer to the earlier section "Factors which may arouse suspicion"
|
11.1.74 |
Consideration should be given to:
The above is NOT an exhaustive list of considerations and should be treated only as a guide. They will not be necessary in every case. Refer to the earlier section "Factors which may arouse suspicion"
|
Away from the scene
11.1.75 | Police Staff:
|
Assessment of the environment and circumstances of the death (joint home/ scene visit)
11.1.76 | As soon as possible and when relevant, after the infant/child death, the lead paediatrician or CDR specialist nurse and police investigator should visit the family at home or at the site of the infant/children collapse or death. |
11.1.77 | The purpose of this visit is to obtain more detailed information about the circumstances and environment in which the infant died, and to provide the family with information and support. |
11.1.78 | This visit should normally take place within daylight hours. If there is likely to be a delay in arranging the joint visit, the police investigator should consider whether the police should carry out an initial visit to review the environment, ascertain whether there are any forensic requirements and appropriately record what is found. Unless there are clear forensic reasons to do so, the environment within which the infant died should be left undisturbed so that it can be fully assessed jointly by the police and health professional, in the presence of the family. |
11.1.79 | The CDR specialist nurse/paediatrician with the police investigator should inform the family of the nature and purpose of this home visit. Time should be allowed for the family to go at their own pace, respecting that they may find it difficult to talk through the events or go into the room where the infant has died. Allowance should be made for others, such as grandparents or family friends, to be present to support the parents. |
11.1.80 | The key elements of the history, including the family views on any particular aspects and any points that were unclear or missing from the initial history should be reviewed by the paediatrician, CDR specialist nurse and police. |
11.1.81 | Particular note should be made of any observations made by the family in the days before the infant’s death. They may have taken photographs or video clips on a mobile phone that could shed light on the child’s health or condition before death. |
11.1.82 | Consideration should be given to reconstruction of the sleeping environment, for example, with the use of a doll or prop. There is no strong evidence that this provides a more accurate understanding of the mode or circumstances of death, but it may prove helpful, particularly if the account is not clear, or if there are indications of possible overlaying or asphyxiation. At all times care should be taken not to further distress the family if a reconstruction is required. |
11.1.83 | The police lead investigator should consider whether to request crime scene investigators to take photographs or a video of the scene of the infant’s death, and whether any items should be seized for further forensic investigation. Other possible relevant recordings, such as room temperature, are detailed within the police-approved professional practice guidance for investigators. It is rarely necessary to seize bedding or clothing and these rarely add anything to the investigation. However, there may be circumstances when an infant’s cot or other sleeping environment needs to be taken for further examination. This should only be taken after the joint visit, so all items can be seen first in situ. Similarly, there may be circumstances where an infant’s feeding bottle or other feeds or medications need to be taken for further analysis. |
11.1.84 | The family should be informed of the further investigations that will need to be carried out, including the post-mortem examination, and how and when they will be informed of the results. |
11.1.85 | Information may be given to the family at this stage, in general terms, around possible causes of unexpected infant/child death. It is important, however, to emphasise that it is not possible to give a definitive cause of death until all investigations are complete, and that the ultimate decision on the cause of death rests with the coroner |
11.1.86 | The family should be given a 'When a child dies' leaflet by the CDR specialist nurse when they meet the family, enabling parents, families, and carers to help understand and navigate the child death review process. This document should be offered, in a printed format, to all bereaved families and/or carers. The family should be informed that the CDR specialist nurse will act as their point of contact for support or advice and also, given contact details for local bereavement support and relevant local or national organisations. |
11.1.87 | Following a review of all the information gathered a report of the initial findings, including details of the history, initial examination of the infant and findings from the home visit, as well as an account of any medical investigations and procedures carried out should be prepared by the paediatrician or CDR specialist nurse. This may be done using a standard proforma, should be completed as a matter of urgency. Ideally this report should be available to inform the pathologist conducting the post mortem examination. |
11.1.88 | This report should be made available to the pathologist, the coroner and the police investigator as soon as possible, and preferably prior to the post-mortem examination. |
The Post-mortem examination (PM)
11.1.89 | The aim of the investigation is to establish, as far as is possible, the cause of death. The investigation will concentrate not just on the infant, but will consider the family history, past events and the circumstances. These factors can be helpful in determining why an infant died. All parts of the process should be conducted with sensitivity, discretion and respect for the family and the infant who has died. |
11.1.90 | The PM will be ordered by the coroner, and should be carried out by a pathologist with up-to-date expertise in paediatric pathology. If significant concerns have been raised about the possibility of neglect or abuse having contributed to the infant’s death, a forensic pathologist should accompany the paediatric pathologist and a joint post-mortem examination protocol should be followed. |
11.1.91 | Families have the right to be represented at the PM by a medical practitioner of their choice, provided they have notified the coroner of their wishes. The final decision rests with the Coroner. |
11.1.92 | The coroner should be immediately informed of the initial results of the PM, which may also, with the coroner’s permission, be discussed with the Designated Doctor/CDR specialist nurse and lead police investigator as required. |
Discussion/Meeting following Post Mortem
11.1.93 | Once the initial results of the post mortem are known a further discussion or meeting might need to take place between the lead health professional, child death specialist nurse, police investigator and coroner’s officer to consider this, the outcome of the joint visit ( if undertaken) and the results of any other investigations. The purpose of this discussion is to:
|
11.1.94 | These discussions may take the form of telephone discussions. However where the circumstances are complex or there are many professionals involved a further multi-agency meeting(s) may be required. |
11.1.95 | The lead paediatrician and the police investigator should, with the coroner’s permission, arrange to meet the family to discuss the initial findings. It is important at that stage to emphasise that the findings are preliminary, that further investigations may be required, and that it is not possible, at that stage, to draw any conclusions about the cause of death. |
11.1.96 | As part of the explanation about the PM examination given to the family, the CDR specialist nurse or coroner’s officer must explain that, according to the Coroners (Investigation) Regulations 2013, tissue samples will be taken and that, following the coroner’s investigation, the family can determine the fate of the tissue according to the Human Tissue Act 2004 |
Child Death Review Meeting (CDRM) for all child deaths
11.1.97 | Once the results of the final post mortem and other clinical investigations (including SIs) are available, the CDRM is arranged by the hospital to review all the findings. The CDRM should ideally take place before the coroner’s inquest to inform and contribute to the coroner’s investigation. In exceptional cases where the deceased child/young person has not taken to the hospital the most relevant agency/service should lead on and arrange the CDRM. |
11.1.98 | The CDRM is a multi-professional and multi-dimensional meeting where all matters relating to an individual child’s death are discussed by the professionals directly involved in the care of that child during life and their investigation after death. |
11.1.99 | In all cases, the aims of the CDRM are:
|
11.1.100 | The nature of this meeting will vary according to the circumstances of the child’s death and the practitioners involved. For example, it could take the form of a perinatal mortality review group meeting in the case of a baby who dies in a neonatal unit; a hospital-based mortality meeting following the death of a child in a paediatric intensive care unit; or similar case discussion |
11.1.101 | The CDRM is a meeting for professionals. In order to allow full candour among those attending, and so that any difficult issues relating to the care of the child can be discussed without fear of misunderstanding, parents should not attend this meeting. However, parents should be informed of the meeting by their nurse and have an opportunity to contribute information and questions through their nurse. |
11.1.102 | With the exception of hospital based mortality meetings, the CDRM should be chaired by a suitable lead health professional. |
11.1.103 | The meeting should take place once investigations (e.g. any NHS serious incident investigation or post-mortem examination) have concluded, and reports from key agencies and professionals unable to attend the meeting have been received. |
11.1.104 | The meeting should take place as soon as is practically possible, ideally within three months, although serious incident investigations and the length of time it takes to receive the final post-mortem report may cause delay |
11.1.105 | The CDRM may proceed in the context of a criminal investigation, or prosecution, in consultation with the senior investigating police officer. The meeting cannot take place if the criminal investigation is directed at professionals involved in the care of the child, when prior group discussion might prejudice testimony in court |
11.1.106 | At the meeting’s conclusion, there should be a clear description of what follow- up meetings have already occurred with the parents, and who is responsible for reporting the meeting’s conclusions to the family. This would generally be the CDR nurse who is supporting the family. In a coroner’s investigation, such liaison should take place in conjunction with the coroner’s office, bearing in mind that the conclusion on the cause of death in such cases is the responsibility of the coroner at inquest |
Child Death Overview Panel (CDOP)
11.1.107 | CDOP is a multi-agency panel set up by CDR partners to review the deaths of all children normally resident in their area, and, if appropriate and agreed between CDR partners, the deaths in their area of non-resident children, in order to learn lessons and share any findings for the prevention of future deaths. |
11.1.108 | CDOPs should conduct an anonymised secondary review of each death where the identifying details of the child and treating professionals are redacted. This review should be informed by a standardised report from the CDRM, and ensures independent, multi-agency scrutiny by senior professionals with no named responsibility for the child’s care during life |
11.1.109 | Quoracy should usually demand attendance by lead professionals from health and the local authority. The CDOP should meet on a regular basis, determined by the number and type of deaths to be reviewed across a year |
11.1.110 |
|
11.1.111 | CDOP, on behalf of CDR partners, may request any professional or organisation to provide relevant information to it, or to any other person or body, for the purposes of enabling or assisting the performance of the child death review partner’s functions. Professionals and organisations must comply with such requests |
11.1.112 | CDOP should aim to review all children’s deaths within eight weeks of receiving the report from the CDRM or the result of the coroner’s inquest. The exception to this might be when discussion of the case at a themed panel is planned. |
11.1.113 | Parents should be informed by their key worker/CDR nurse, that the review at CDOP will happen, and the purpose of the meeting should be explained. Particular care and compassion is needed when informing parents about the meeting and its purpose, to avoid adding to parents’ distress or giving the impression in error that the parents are being excluded from a meeting about their child. With this in mind, it should be made clear that the meeting discusses many cases, and that all identifiable information relating to an individual child, family or carers, and professionals involved is redacted. |
11.1.114 | It should also be explained to parents that because of the anonymous nature of the CDOP review, it will not be possible to give them case specific feedback afterwards. |
11.1.115 | Parents should be assured that any information concerning their child's death which they believe might inform the meeting would be welcome and can be submitted via the lead nurse or their CDR nurse. |
11.1.116 | CDOP should assure itself that the information provided to the panel provides evidence that the needs of the family, in terms of follow up and bereavement support, have been met. |
11.1.117 | CDR partners must at such intervals as they consider appropriate, prepare and publish a report on
|
11.1.118 | In addition to these statutory requirements, CDR partners should aim to ensure that the report is written in plain English, and includes a summary of the key learning arising from the reviews, reports from themed panels, and actions that have been taken to prevent child deaths as a result of this learning. |
11.1.119 | Sussex CDOP should record the outcome of their discussions on a final Analysis Form, and submit copies of all completed forms associated with the child death review process and the analysis of information about the deaths reviewed (including but not limited to the Notification Form, the Reporting Form, Supplementary Reporting Forms and the Analysis Form) to the NCMD. |
Themed CDOP panels
Themed CDOP panels
11.1.120 | Some child deaths will be best reviewed at a themed meeting. A themed meeting is one where the Sussex CDOP, or with neighbouring CDOPs, will collectively review child deaths from a particular cause or group of causes. Such arrangements allow appropriate professional experts to be present at the panel to inform discussions, and/or allow easier identification of themes when the number of deaths from a particular cause is small.
|
11.1.121 | Some child deaths will be best reviewed at a themed meeting. A themed meeting is one where the Sussex CDOP, or with neighbouring CDOPs, will collectively review child deaths from a particular cause or group of causes. Such arrangements allow appropriate professional experts to be present at the panel to inform discussions, and/or allow easier identification of themes when the number of deaths from a particular cause is small.
|
11.1.122 | At a local level, themed panels will include regular neonatal deaths and potentially unexpected deaths. The Sussex CDOP should also explore the option of conducting themed panels at a regional level for example on children with disabilities, adolescent deaths, suicide, and malignancy. The frequency of such panel meetings would be dictated by the number of deaths in each category; for deaths across Sussex. |
11.1.123 | Themed panels should occur within 12 months of the child’s death. The CDOP coordinator, Designated doctor for child death, and CDOP Chair will work together to decide which cases might best benefit from review at a themed panel. |
11.1.124 | Themed CDOP panels should develop in line with local circumstances. The panels below are given as examples:
|
Learning Disabilities Mortality Review (LeDeR)
11.1.125 | It is important to specifically recognise and record if a child or young person has learning disabilities, irrespective of any other diagnoses or syndromes that are recognised. This enables effective monitoring, auditing and evaluation of service provision; resource management and strategic planning; and assurance regarding equitable access to health services. |
11.1.126 | The LeDeR programme describes a review process for the deaths of people aged 4 years and over with learning disabilities in England. The LeDeR programme team aims to support local areas to implement the LeDeR review process and to take forward the lessons learned from individual mortality reviews to make improvements to service provision. The LeDeR programme also collates and shares anonymised information from the review so that common themes, learning points and recommendations can be identified and taken forward into policy and practice improvements. |
11.1.127 | It is expected that the CDR process will be the primary review process for children with learning disability and that it will not be necessary for the LeDeR programme to review each case separately. When notified of the death of a child or young person aged 4-17 years who has learning disabilities, or is very likely to have learning disabilities but not yet had a formal assessment for this, the CDOP co-ordinator should report that death to the LeDeR programme at http://www.bristol.ac.uk/sps/leder/notify-a-death/ or telephone 0300 777 4774 |
11.1.128 | The CDR partners should then ensure that the LeDeR programme is represented at the meeting at which the death is reviewed. In addition, the Local Area Contact for the LeDeR programme and the CDOP chair should discuss the potential input from an LeDeR reviewer to offer expertise about learning disabilities (if appropriate) and to ensure the collection of core data for the LeDeR programme. Any completed notes and/or Analysis Form arising from the discussion should be submitted to the Local Area Contact for the LeDeR programme by the CDR partners. |
Family engagement and Bereavement support
11.1.129 | Every family has the right to have their child’s death sensitively reviewed in order to, where possible, identify the cause of death and to ensure that lessons are learnt that may prevent further children’s deaths. Professionals have a duty to support and engage with families at all stages in the review process. Parents and carers should be informed about the review process, and given the opportunity to contribute to investigations and meetings, and be informed of their outcomes. |
11.1.130 | All staff in all agencies and organisations have a duty to support bereaved parents and carers after their child’s death and to show kindness and compassion. Where there have been issues with the quality of care provided, healthcare organisations have a duty of candour to explain what has happened, to apologise as appropriate, and to identify what lessons may be learnt to reduce the likelihood of the same incident happening again. This provision should extend beyond the medical sector to any instances of error in the care of the child |
11.1.131 | The processes that follow the death of a child are complex, in particular when multiple investigations are required. Recognising this, all bereaved families should be given a single, named point of contact to whom they can turn for information on the CDR process, and who can signpost them to sources of support |
11.1.132 | In the case of a child death that triggers a JAR, the single point of contact will be the CDR specialist nurse. In the case of an expected death, the single point of contact is likely to be a member of the CDR nurse team or appropriate health professional. Families should expect to be able to contact the nurse during normal working hours. |
11.1.133 | An appropriate consultant neonatologist or paediatrician should also be identified after every child’s death to support the family. This might either be the doctor that the family had most involvement with while the child was alive or the designated professional on-duty at the time of death. The CDR nurse where appropriate could liaise with the allocated doctor to arrange follow-up meetings at locations and times convenient to the family. |
11.1.134 | At the time of a child’s death, other professionals may also provide vital support to the family; these include (but are not limited to) the GP, clinical psychologist, social worker, family support worker, midwife, health visitor or school nurse, palliative care team, chaplaincy and pastoral support team |
11.1.135 | The CDR nurse can act as a liaison between family and professionals involved in the process around the death of the child. |
Bibliography
11.1.136 |
JAR Flowchart
11.1.137 | JAR flowchart
|
Joint Agency Response to Child Deaths Initial Information Sharing and Planning (IISP) Meeting Minutes Template
Unexpected Death Hospital Pro forma


