11.1 Multi-agency guidance for responding and reviewing child deaths
Last reveiwed November 2023
Date of next review November 2026
- Introduction(Jump to)
- Background(Jump to)
- Legislative Framework / Core Standards(Jump to)
- Scope and purpose of this protocol(Jump to)
- Terminology(Jump to)
- Operational Protocol(Jump to)
- Immediate decision making and notifications (all deaths)(Jump to)
- Notifications(Jump to)
- Joint Agency Response (JAR) Protocol(Jump to)
- Suspected suicide(Jump to)
- Investigation and information gathering(Jump to)
- Post Mortem Examination (Coronial)(Jump to)
- Post Mortem Examination (Non-Coronial):(Jump to)
- NHS Serious Incident Investigation.(Jump to)
- The Healthcare Safety Investigations Branch (HSIB)(Jump to)
- Family engagement and bereavement support(Jump to)
- Child Death Review Meetings for all deaths(Jump to)
- Child Death Overview Panel(Jump to)
- Appendices(Jump to)
The Sussex Joint Agency Protocol for Unexpected Child Deaths, was originally published in 1999. This latest version updates the Sussex Child Death Review Practice Guidance 2020 and covers all child deaths. It takes into account the following:
These documents contain national recommendations relating to the investigation and reviews of child deaths.
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.
In 2006 the Department for Children Schools and Families document, ‘Working Together to Safeguard Children’, sets out guidance intended to protect and promote the welfare of children. The document outlines the responsibilities of Local Safeguarding Children Boards (LSCBs) to ensure effective co-ordination between individuals and organisations throughout their local authority areas. In relation to child death reviews, this document outlined the two inter-related processes required:
As part of the Children Act 2004, LSCBs became mandatory in April 2008 and as a result, the procedures set out regarding Child Death Reviews became statutory.
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 enshrined in law in April 2017 with the granting of Royal Assent to the Children andSocial Work Act 2017. Making changes to child death review processes and legal accountability.
The Children Act 2004, as amended by the Children and Social Work Act 2017, outlines that the two child death review partners (who are the local authorities and integrated care boards) now hold the legal responsibility.
The child death review partners must make arrangements for the analysis of information from 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. 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.
This guidance is intended to be used by any agency involved in the death of a child.
Legislative Framework / Core Standards
Scope and purpose of this protocol
This protocol aims to set out the processes to be followed when responding to, investigating, and reviewing the death of any Sussex child.
This includes the immediate actions that should be taken after a child’s death; the review of a child’s death by those who interacted with the child during life and any professionals involved in the investigation after death; through to the last stage of the child death review process which will be the statutory review arranged by the child death review partners by the Child Death Overview Panel (CDOP).
This guidance aims to clarify processes and sets out principles for how all organisations and professionals (e.g. Healthcare providers, Sussex Police, Local Authorities and ICB staff who care for children or have a role in the child death review process will work together to meet the below objectives.
All of these are of equal importance.
The child death review process covers children; a child is defined in the Act as a person under 18 years of age. 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.
Child Death Review Partners
“Child death review partners” (“CDR partners”) are defined in section 16Q of the Children Act 2004 and means, in relation to a local authority area in England, the local authority and any ICB for an area any part of which falls within the local authority area. CDR partners for two or more local authority areas in England may agree that their areas should be treated as a single area. The responsibilities of CDR partners regarding the child death review process are set out in sections 16M-Q of the Children Act 2004. CDR Partners hold legal responsibility for ensuring that arrangements are made to review the death of a child who is normally resident within their local authority.
CDRM (Child Death Review Meeting)
The CDRM is a multi-professional meeting where all matters relating to an individual child’s death are discussed by professionals who were directly involved in the care of the child during their life, and any professionals involved in the investigation into their death. The nature of this meeting will vary according to the circumstances of the child’s death and the practitioners involved, and should not be limited to medical staff.
Child Death Overview Panels (CDOP) is a multi-agency panel working on behalf of the CDR Partners to conduct the statutory review into the deaths of all live-born children normally resident within their area (from birth to 18 years of age). CDOPs identify factors in order to learn lessons and share any findings for the prevention of future deaths. CDOPs ensures independent, multi-agency scrutiny by senior representatives from key partner agencies (with no named responsibility for the child’s care during life) who together have expertise in a wide range of services regarding children’s health and wellbeing.
Designated doctor for child deaths
A senior paediatrician, appointed by the CDR partners, who will take a lead in coordinating responses and health input to the child death review process, across a specified locality or region.
Joint Agency Response
A coordinated multi-agency response (on-call health professional, police investigator, duty social worker), should be triggered if a child’s death:
A person who acts as a single point of contact for the bereaved family, who they can turn to for information on the child death review process, and who can signpost them to sources of support. This person will usually be a healthcare professional.
Lead health professional
When a Joint Agency Response is triggered, a lead health professional should be appointed, to coordinate the health response to that death. This person may be a the senior attending paediatrician or senior nurse, with appropriate training and expertise. This person will ensure that all health responses are implemented, and be responsible for ongoing liaison with the police and other agencies.
Medical Certificate of Cause of Death (MCCD)
An official certificate that enables the deceased’s family to register the death, provides a permanent legal record of the fact of death, and enables the family to arrange the funeral. It provides information on the relative contributions of different diseases to mortality.
A medical examiner is a senior medical doctor who provides independent medical scrutiny of all non-coronial deaths, they have a responsibility to ensure:
The purpose of the medical examiner system is to:
National Child Mortality Database
A National Child Mortality Database (NCMD) formed in April 2019 and collects child mortality data to enable more detailed strategic analysis and interpretation of the data arising from the completed Child Death Review process across England. All CDOP’s are required to submit copies of their analysis and data collected. The NCMD will ensure that child deaths are learned from and this learning is widely shared, both locally and nationally.
The Patient Safety Incident Response Framework (PSIRF) sets out the NHS’s approach to developing and maintaining effective systems and processes for responding to patient safety incidents for the purpose of learning and improving patient safety. The PSIRF will replace the current Serious Incident Framework (2015) which described the process and procedures to help ensure Serious Incidents are identified correctly, investigated thoroughly and, most importantly, learned from to prevent the likelihood of similar incidents happening again.
Perinatal Mortality Review Tool (PMRT)
The PMRT is a web-based tool that is designed to support a standardised review of care of perinatal deaths from 22+0 weeks gestation to 28 days after birth. It is also available to support the review of post-neonatal deaths where the baby dies in a neonatal unit after 28 days but has never left hospital following birth. At clinicians’ discretion it might also be used for the review of deaths of live-born infants.
Learning Disability Mortality Review (LeDeR) programme
LeDeR is a service improvement programme that reviews the deaths of people aged 4 years and over with a learning disability and autistic people. Established in 2017 and funded by NHS England, it's the first of its kind. LeDeR works to:
Deaths of any child aged 4-17yrs (inclusive) with a known learning disability, will be reviewed through the Child Death Review process.
This is the medical term for ‘autopsy’. In most cases this will involve an examination by a specialist pathologist including opening of the body and head, collection of samples for ancillary investigations and microscopic examination of tissue samples. The results of all such investigations are usually required before a medical cause of death can be provided.
SUDI/SUDC (sudden unexpected death in infancy/childhood)
This encompasses all cases in which there is 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.
SIDS (sudden infant death syndrome)
The sudden and unexpected death of an infant under twelve months of age, with onset of the lethal episode apparently occurring during normal sleep, which remains unexplained after a thorough investigation, including performance of a complete post-mortem examination and review of the circumstances of death and the clinical history. It is preferred as a registered cause of death to other equivalent terms such as ‘unascertained’ or ‘undetermined’. Labelling a death as SIDS does not exclude the possibility that the child may have died of a natural or external cause that we have been unable to ascertain or prove conclusively.
This is a legal term often used by coroners, pathologists and others involved with death investigation, where the medical cause of death has not been determined to the appropriate legal standard, which is usually the balance of probabilities.
IPD (Immediate Planning Discussion)
An IPD is a discussion held amongst the attending health professional and on-call police before the family leave the emergency department. They will consider outstanding investigations, notification of agencies, arrangements for the post mortem examination, and plans for a visit to the home or scene of collapse by those with appropriate forensic training.
IISPM (Initial Information Sharing and Planning Meeting)
The IISPM is a multi-agency meeting held following the death of a child (usually by the next working day) where a Joint Agency Response is required. This is jointly planned by the Senior Investigating Officer, Lead Health Professional and Children’s Social Care. Multi-agency professionals and specialist agencies that have been involved with the child/family will be requested to attend.
HSIB (Healthcare Safety Investigation Board)
HSIB is hosted by NHS England and NHS Improvement. HSIB is independent from regulatory bodies including the Care Quality Commission (CQC) and they investigate safety incidents without attributing blame or liability. The focus is to identify opportunities to learn and to improve patient safety across the system.
A child death review must be carried out for all children regardless of the cause of death. The below flowchart sets out the main stages of the process: Child death operational protocol flowchart
Immediate decision making and notifications (all deaths)
Immediate decision making Discussion
In order to respond appropriately to each death, senior professionals attending the child at the end of their life should consult with appropriate professionals in order to determine the correct course of action. They should within 1-2 hours:
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).
If professionals become aware of a death or possible death from a relative or from an unusual source, please contact the CDOP team for discussion and confirmation.
Within 24 hours of the death: a number of notifications must be made, this may vary depending on the circumstances of the death, age of child and the actions that must be taken.
The health care team should notify:
Medical examiners should follow national recommendations made within Good Practice Series: National Medical Examiner’s Good Practice Series No 6. – Child Deaths.
Although the cause of death for most children can be understood, it has been agreed for child deaths occurring only in East Sussex, these should be discussed with the Coroner prior to a MCCD (death certificate) being signed.
If at any stage concerns are raised that abuseor neglect may have contributed to the infant/child’s death or significant concerns emerge about safeguarding issues, the senior Police officers, Head of Safeguarding or designated doctor for child death should be contacted for consideration of a Joint Agency Response. In these cases the police will normally take the lead in investigating the death. An initial multi-agency strategy discussion should be organised for any live siblings or children considered at risk.
After immediate decisions have been taken and relevant notifications made, a number of investigations may then follow. They will vary depending on the circumstances of the case and may run in parallel.
Joint Agency Response (JAR) Protocol
The Sudden-unexpected-death-in-infancy-and-childhood-2e gives comprehensive advice and expectations of all agencies involved in a JAR, and should be applied in full by all agencies. This protocol should be seen as complementary to the SUDI/C Guidelines.
The aims of the JAR are documented within the above guidelines however professionals should respond to meet the Sussex Child Death Review objectives which have been documented above.
A JAR 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. In such circumstances the Joint Agency Response 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, appropriate clinical investigations and, if necessary, a ‘scene of collapse’ visit to occur.
A Joint Agency Response should also be triggered where there is evidence that a child may be presumed dead. For example: A child being witnessed to have washed out to sea.
When a child with a known life limiting and or life-threatening condition dies in a manner or a time that was not anticipated, the lead health professional 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 designated doctor for child death/ CDR nurse team.
In these circumstances for a child with an End of Life Care Plan the arrangements may differ: 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.
All deceased children that meet the criteria for a JAR should ideally be transferred to the nearest Children’s Emergency Department (ED) that will enable the JAR to be triggered and appropriate clinical investigations performed and hospital unexpected child death proforma completed.
However, deceased children (older than 12 years of age) that die in traumatic circumstances such as suspected/completed suicide, traumatic Motor Vehicle Accident/rail incidents with severely disrupted body can be transferred straight to the hospital mortuary from the scene/home. The agreement on where the deceased child will be transported, will be made between Coroners Officer, lead health professional and lead police investigator.
In any of these circumstances, the lead health professional, on-call police and social work team and the child death review nurse team (within working hours) should be contacted immediately to convene an Immediate Planning Discussion.
The Coroners' officer should also be called and will attend ED. A discussion should take place with the on-call Consultant Paediatrician to plan the external examination and discuss what samples are required to be taken. If the child’s body has been transferred straight to the hospital mortuary from the scene/home the coroners' officers will contact the on-call Consultant Paediatrician to consider and plan the external examination and discuss sampling.
This should include (as a minimum) the lead health professional, and lead police investigator and ideally take place before the family leave the emergency department (if applicable). Input from Children’s Services, the ambulance crew involved in the transfer to hospital and CDR nurse team is desirable. If these professionals are not able to attend a face to face discussion then their contribution may need to be virtual.
This Immediate Planning Discussion (IPD) should consider the factors listed in 11.1.35 and also the following:
These discussions should be recorded in medical notes.
The Multi-Agency Safeguarding Hubs for Children (by area of residency) should be alerted as a matter of urgency so that the Joint Agency Response Initial Information Sharing and Planning Meeting (IISPM) can be arranged and chaired.
When responding to a child death who is resident outside of Sussex, the chairing of an IISPM may vary depending on their local child death procedures and on the circumstances of death. Professionals should liaise between children’s social care teams regarding planning of the IISPM. When a Sussex child dies out of area, the expectation is that the health professionals, police and senior social workers in that area will respond and liaise with local teams.
An Initial Information Sharing and Planning Meeting (IISPM) should be held as soon as possible after the death. This meeting:
Where a child usually resident in Sussex, but has died out of local area, the local authority in which the child is usually resident is responsible for holding an IISPM. The local authority where the child has died will host the Strategy Discussion, and the local authority where the child is usually resident will contribute.
The purpose of the IISPM is:
If JAR professionals identify safeguarding risk/s, further information is needed or emerging information that needs to be discussed, CSC should arrange a Follow up Initial Information Sharing and Planning Meeting. This should include the lead health professional (paediatrician), child death review specialist nurse, police investigator and coroner’s officer to:
The information shared at both the IISPM and follow-up meetings (including the minutes) are strictly confidential and should only be shared on a need to know basis. This information must not be shared outside of attendees organisation without prior consent from the chair or CDR Partnership (LA and ICB). The minutes should be stored in line with organisations Data Protection and Confidentiality procedures.
In circumstances where a child has died, and abuseor neglect is known or suspected to have caused or directly contributed to the death, professionals at the initial information-sharing and planning meeting should notify the safeguarding partners. They have the responsibility to determine whether the case meets the criteria for a local child safeguarding practice review. (it is important to be aware that this referral can occur at any part of the child death review process).
Professionals should refer to rapid review guidance or contact the relevant Head of Safeguarding.
Wherever the criteria for a formal notification to the National Panel is met should be discussed within the agency in collaboration with safeguarding counterparts in the local authority. The duty to submit a formal notification lies with the relevant Head of Safeguarding within the local authority.
A child suspected suicide should always follow the Joint Agency Response process and professionals should also follow the safeguarding policy: Response to a suspected suicide.
LA areas should follow their guidance to managing suicide especially in educational settings.
Initial Action at the Scene
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:
The only exceptions to the above would be when the death has occurred following planned end of life or palliative care, or when the cause of death is very obvious such as in the case of severe trauma. Under these circumstances transfer to local mortuaries (under the direction of the police, coroners officer and consultant paediatrician) or leaving the patient at home will remain the appropriate course of action.
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 following specialist officers are contacted and attend:
The DI attending the scene of the death will:
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 appendix (11.1.139) "Factors which may arouse suspicion"
At home, unless the death is clearly unnatural, there is no reason why parents cannot hold their dead child. This should however take place under the discreet observation of a police officer.
At the Hospital
Appropriate clinical investigations (commonly referred to as the Kennedy samples) should be performed in some cases. The focus for the Kennedy guidance is on children aged 0–24 months, but in order to be consistent with Working Together, which covers all children aged 0–18 years, it is suggested that these principles may apply to children of all ages, although there will be exceptions. The decision whether to take Kenedy samples should be made by the lead paediatrician, in discussion with the DI and/or Coroner/coroner’s officer.
It is unlikely that skeletal surveys will be completed out of hours.
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 - (a retinal haemorrhage is bleeding from the blood vessels in the retina at the back of the eye)) the Police will need to arrange a forensic post-mortem examination.
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, Police and professionals in other key agencies. All injuries should be recorded and the lead police investigator should arrange a photographic record .
Traumatic deaths (over 12ys):
Bodies of Children under 12 yrs of age (unexpected deaths):
Assessment of the environment and circumstances of the death (joint home/scene visit)
As soon as possible and when relevant, after the infant/child death, the lead paediatrician or CDR specialist nurse (this should be considered at the IISPM) and police investigator should jointly visit the family at home or at the site of the infant/children collapse or death. Prior to the visit, the lead paediatrician and/or CDR specialist nurse with the police investigator should inform the family of the nature and purpose of this home visit.
The purpose of this visit is to obtain more detailed information about the circumstances of the death, assess the environment in which the infant/child died (or collapsed) and to provide the family with information and support.
This visit should normally take place within daylight hours, after the IISPM, and within 24 – 48 hours of the death. 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. CDR Nurse or paediatrician should consider the sleep environment, including temperature of the room, bedding, ventilation, smoke and other hazards etc.
Professionals should ensure adequate time is allocated for the visit and to allow 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. It is likely that family friends or grandparents may be present to support the parents, and this should be respected.
The initial history should be reviewed at the home visit with the family to ensure that all information is accurately captured and any points that were unclear or missing clarified.
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.
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.
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.
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.
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.
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 proforma, should be completed as a matter of urgency.
This report should be made available to the pathologist, the coroner, the police investigator and local CDOP as soon as possible, and prior to the post-mortem examination to inform the pathologist.
Investigation and information gathering
After the immediate decisions and notifications have been made, a number of investigations may then follow. Which investigations are necessary will vary depending on the circumstances of the individual case. They may run in parallel, and timeframes will vary greatly from case to case. These may include:
The learning from these investigations and concurrent processes may inform the CDRM and must be available for the anonymous independent review by CDR partners at CDOP.
Staff from all agencies need to understand that on occasions in suspicious circumstances (please see 11.1.139 - 'Factors that arise suspicion') the early arrest of parents or carers may be essential in order to secure and preserve evidence and to facilitate the investigation. Professionals need to be aware that they may be required to provide statements of evidence in these circumstances.
Essential information such as demographic data, detailed information relating to the circumstances of death with consideration of the medical and social history, the physical environment and any service delivery issues for the child and family must be gathered for all child deaths. Agencies or professionals who have information relevant to a child death will be requested by the CDOP to complete a Reporting Form.
Post Mortem Examination (Coronial)
The aim of the post mortem examination is to establish, as far as is possible, the cause of death. This 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
When the death has been reported to the coroner, depending on the circumstances of the death, a PM may be requested, which will be carried out by a paediatric pathologist (or in specific circumstances, an adult pathologist or home office forensic pathologist). The coroner is required by law to order a post-mortem when a death is suspicious, sudden or unnatural, consent will not be asked by the family for this to take place.
Prior to commencing the examination, the pathologist should be fully briefed on the history and physical findings at presentation, and on the findings of the death scene investigation by the lead health professional, Specialist CDR Nurse and police investigator. Other photographs of the infant that may have been taken at presentation or in the emergency department should also be made available.
If significant concerns have been raised about the possibility of neglector abuse having contributed to the infant/child’s death, a forensic pathologist should accompany the paediatric pathologist and a joint post-mortem examination protocol should be followed.
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.
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 lead health professional and lead police investigator as required.
Once the initial results of the post mortem (or provisional results) are known the lead health professional should be informed and an interim/review discussion or consideration of a follow up IISPM should take place.
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.
The lead health professional and the police investigator (where appropriate) 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. The family must be kept up to date as results come back and the lead health professional should offer to meet with the parents once the final PM report is completed. Parents MUST NOT receive a PM report directly, this can be traumatic for them and requires careful direct communication; the paediatrician’s role is to help the family understand the findings of the post mortem.
As part of the explanation about the PM examination given to the family, the 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.
Post Mortem Examination (Non-Coronial):
Hospital Post-mortems are sometimes offered to families and will be requested by doctors. This could provide more information about an illness or the cause of death, or to further medical research. Hospital post-mortems can only be carried out, with consent.
If a hospital post-mortem was requested, the results should be sent to the referring hospital and results discussed with the family. If the PM brings new information to light to the referring hospital that brings the cause of death on the MCCD into question, this should be discussed with the coroner, paediatrician and medical examiner.
NHS Serious Incident Investigation.
Serious incident investigations are undertaken with the sole aim of learning about any problems in the delivery of healthcare services and in understanding the causes and contributory factors of those problems of which there may be several. Awareness that a serious incident may have occurred may come sometime after the child’s death. It is never too late to instigate a serious incident investigation. Serious incident investigations may occur in parallel to other investigations e.g. a Joint Agency Response.
NHS serious incident investigations are not conducted to hold organisations or individuals to account. They are designed to generate information that can be used to implement effective and sustainable changes to care provision, to reduce the risks of similar problems occurring in the future.
NHS trusts use the Serious Incident Framework (2015) to guide their investigation of serious incidents however in future will transition to an updated Patient Safety Incident Response Framework (PSIRF).
The Healthcare Safety Investigations Branch (HSIB)
Healthcare Safety Investigations Branch (HSIB) carries out independent investigations into safety concerns that occurred after 1 April 2017, within NHS funded care in England. Its objective is to be thorough, independent and impartial in its approach without apportioning blame or liability. The HSIB accepts referrals from any source, and these can be made through the HSIB website. The investigations that are taken forward are chosen due to their potential to achieve system-wide learning and improvement, and ultimately to improve the care provided for patients. This is accomplished by working collaboratively with all involved in the incident, including patients and families, to establish cause and make recommendations that enable system-wide change.
Separately, HSIB investigate NHS Serious Incident Investigation cases of intrapartum stillbirth, early neonatal deaths and severe brain injuries from 37 weeks gestation. These investigations will continue to be characterised by a focus on learning and not attributing blame, and the involvement of the family is a key priority, but will not be covered by the safe space principles unlike their national investigations into broader safety concerns.
Family engagement and bereavement support
As stated, it is important for every family 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. All parents and carers should be informed about the child death review process and are given the opportunity to contribute to investigations, meetings and be advised of their outcomes.
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. It should be remembered that bereaved parents may be in state of extreme shock when their child has died.
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.
Each child death is unique, therefore the support around the family is individual to the family and the circumstances of the child’s death. The family/carers may receive support from different services as the processes that follow the death of a child can be complex, in particular when multiple investigations are required. Recognising this, all bereaved families should be given a ’keyworker’ to whom they can provide information on the child death review process, the course of any investigations pertaining to the child, including liaising with the coroner’s officer and any police family liaison officer and who can signpost them to sources of support.
When a child death triggers a JAR, the keyworker will usually be the CDR specialist nurse and this should be confirmed at the IISPM.
In the case of an explained death, the keyworker is likely to be a member of the CDR nurse team or an appropriate health professional. For all deaths, families should be able to contact their keyworker during normal working hours.
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 keyworker where appropriate, will liaise with the allocated doctor to arrange necessary follow-up meetings at locations and times convenient to the family.
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, hospice, community nurse, health visitor or school nurse, palliative care team, chaplaincy and pastoral support team.
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.
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.
Child Death Review Meetings for all deaths
The CDRM is a multi-professional 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.
In all cases, the aims of the CDRM are:
For deaths of babies in a midwifery unit, on delivery suite, and in a neonatal intensive care unit, the child death review meeting will often be known as a perinatal mortality review group meeting. This meeting is supported by the use of the national Perinatal Mortality Review Tool (PMRT) and advice and support about the use of the tool is provided by the MBRRACE-UK/PMRT team: https://www.npeu.ox.ac.uk/pmrt
The CDRM is a professionals-only meeting chaired by a suitable lead professional within the organisation where the death was declared. 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 /carers should be informed of the meeting by their keyworker and have an opportunity to contribute information and questions through their keyworker if the family choose to engage with the child death review process.
The CDRM is usually arranged by the organisation which confirms the death of the child and considered an integral part of wider clinical governance processes. The organisation of the meeting might be informed by practical considerations relating to where the majority of the child’s treatment took place.
In exceptional cases where the deceased child/young person has not been taken to the hospital, the most relevant agency/service should lead on and arrange the CDRM.
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.
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.
The meeting should not take longer than 1-2 hours maximum. It is not necessary for each representative to share a full chronology of their service’s role in the child’s life as this will add significant time to the meeting. A brief summary or report by exception may be sufficient in most cases. This means the focus of the meeting can be on support for the family and identifying the learning and modifiable factors.
Each child’s death requires unique consideration and where possible, should engage professionals across the pathway of care. Invitees to the CDRM should be established and quoracy (for key professionals) determined by chair prior to invites. If professionals are unable to attend, they may be required to submit a report to the meeting.
The CDRM should ensure that a LeDeR programme representative is represented at the meeting when a child or young person aged 4-17 years who has learning disabilities is reviewed.
The CDRM organisers should alert the CDOP management team of the date of their CDRM and the Chair for the meeting.
To support the chairs with their Child Death Review Meeting preparation and developing a broad understanding of the case, the CDOP management team can advise where possible with coordination and provide information that has been gathered e.g. consolidated agency reporting forms. This should be managed with strict confidentiality, and not distributed to any other parties, including CDRM attendees, or permanently stored to any external systems other than the information shared should be securely destroyed/removed following the meeting.
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. In these cases, discussions should take place with police with a view to seeking agreement to hold a modified CDRM to ensure family support needs are addressed.
The CDRM should take place before the coroner’s inquest to inform and contribute to the coroner’s investigation.
When reviewing a death where abuse or neglect is known or suspected to have caused or contributed to the death, professionals at the meeting should notify the safeguarding partners. They have the responsibility to determine whether the case meets the criteria for a local child safeguarding practice review. Professionals should refer to rapid review guidance or contact the relevant Head of Safeguarding.
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.
Outputs from CDRMs (including a draft Analysis Form) should be circulated to attendees and shared with the Child Death Overview Panel and HM Coroner (if this is applicable and under coronial investigation) within 4 weeks of the meeting.
The information shared at the CDRM and the minutes are strictly confidential and should only be shared on a need to know basis. This information must not be shared outside of attendees organisation without prior consent from the chair or CDR Partnership (LA and ICB). The minutes should be stored in line with organisations Data Protection and Confidentiality procedures.
Actions arising from CDRMs should be captured within a formal action tracker and completion monitored and followed up through internal assurance processes. Local learning from CDRM’s should feed into the organisations learning from deaths governance.
Child Death Overview Panel
CDOP is a multi-agency panel set up by CDR partners to review the deaths of all children normally resident in Sussex, 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.
CDOPs should conduct an anonymised secondary review of each death where the identifying details of the child and treating professionals are redacted.
The CDOP ensures independent, multi-agency scrutiny by senior professionals with no named responsibility for the child’s care during life. The review will occur once all other child death processes i.e. coronial inquest or Child Safeguarding Practice Review have been completed.
The general and themed panels are not quorate without a Designated Doctor for Child Deaths (not mandatory for the neonatal panel).
The functions of CDOPinclude:
The panel membership of CDOP includes professionals from a range of agencies with safeguarding expertise including professionals who are also members of the Local Safeguarding Children Partnership Case Review Groups. CDOP is therefore well placed to consider abuse and neglect when reviewing child deaths and to refer onto the Local Safeguarding Children Partnerships where consideration by the Case Review Group of undertaking a Rapid Review or LCSPR is indicated in line with national guidance.
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.
CDOP should aim to review all children’s deaths within six 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.
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.
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.
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.
The CDOP should ensure that a LeDeR programme representative is represented at the panel when a child or young person aged 4-17 years who has learning disabilities is reviewed.
JAR Checklist for Suspected Suicide in Children and Young People (CYP)
General Advice for Professionals when dealing with the family, following an unexpected death
Factors which may arise suspicion
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.
Roles & Responsibilities
The roles and responsibilities of CDR professionals (where not stated within this guidance) can be found within existing national guidance:
All professionals have a duty to support and engage with the child death review process. Professionals who have been involved with the child or family have a responsibility to share information for the purposes of reviewing the child’s death and to participate in local review arrangements.
A Coroner's Officer from the relevant Coroner's Office will attend in most areas of Sussex. They will:
Sussex contact details
Tel: 07867 132655 (CDR Lead Nurse) - Sxicb.email@example.com
Tel: 033022 23599 - firstname.lastname@example.org
West Sussex, Brighton and Hove
Tel: 033022 25560 - email@example.com
West Sussex and Brighton and Hove
St Richard’s Hospital
01243 788122 Ext. 32249 - firstname.lastname@example.org
01903 205111 Ext. 85479 - email@example.com
Royal Sussex County Hospital
Tel: 01273 523162 - firstname.lastname@example.org
Mid Sussex Medical Examiner Office
Tel: 01273 523162 - email@example.com
Tel: 0300 131 4500 Ext: 773292 - firstname.lastname@example.org
Tel: 0300 131 4785 - email@example.com
Brighton & Hove and West Sussex (SCFT) : firstname.lastname@example.org
East Sussex (ESHT) : Eshemail@example.com