11.1 Sussex Child Death Review Practice Guidance

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.

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.

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 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.

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.

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.

If child death review partners find action/s should be taken by a person or organisation, they must inform them

• In addition, child death review partners must, at such times as they consider appropriate, prepare and publish reports on what they have done as a result of the child death review arrangements in their area, and
• how effective the arrangements have been in practice;
• may request information from a person or organisation for the purposes of enabling or assisting the review and/or analysis process - the person or organisation must comply with the request, and if they do not, the child death review partners may take legal action to seek enforcement 

This guidance is intended to be used by any agency involved in the death of a child.

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.

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

This policy sets out arrangements for undertaking child death reviews in Sussex. It should be read in conjunction with the following:

• Child death review: statutory and operational guidance (England) October 2018
• Children Act 1989 & Children Act 2004
• Children and Social Work Act 2017
• Information sharing advice for safeguarding practitioners
• Safeguarding children, young people and adults at risk in the NHS: Safeguarding accountability and assurance framework 
• Sudden-unexpected-death-in-infancy-and-childhood-2e
• Working Together to Safeguard Children

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

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

• To improve the experience of bereaved families, as well as professionals, after the death of a child; and
• To ensure that information from the child death review process is systematically captured to enable local learning and, through the National Child Mortality Database, to identify learning at the national level, and inform changes in policy and

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

This policy should be seen as complimentary to arrangments set out in 11.1.11.

This policy does not cover the Safeguarding policies and procedures as this is covered within the Pan-Sussex procedures.

For the purpose of this document, a child is defined in the Children Act as a person under 18 years of age.

For the purpose of this document, stillbirth is a baby born without signs of life after 24 weeks gestation.

For the purpose of this document, late foetal loss is where a pregnancy ends before 24 weeks gestation without signs of life.

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.

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.

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.

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:

• is or could be due to external causes;
• is sudden and there is no immediately apparent cause (including sudden unexpected death in infancy/childhood (SUDI/C);
• occurs in custody, or where the child was detained under the Mental Health Act;
• where the initial circumstances raise any suspicions that the death may not have been natural; or
• in the case of a stillbirth where no healthcare professional was in attendance.

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.

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.

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

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.

A. Designated Doctor for Child Death Reviews

The Designated Doctor is a senior paediatrician who has the following responsibilities:

• Be responsible for the child death review process, in conjunction with key partners;
• Should be notified of each child death and sent relevant information;
• Advise on the appropriate response to a death in an adult ICU, A&E and attend CDRMs when relevant;
• Advise the CDOP regarding necessary experts required to inform ordinary and themed panels;
• Advise the CDOP in the identification of modifiable contributory factors;
• Liaise, as appropriate, with regional clinical networks to ensure that themed panels are properly coordinated;
• Assist the CDOP in the development and implementation of appropriate preventative strategies to reduce child deaths;
• Contribute to an annual report with the Chair and CDOP members summarising the activities of the CDOP; and
• Provide support to the CDR team.

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:

• advice regarding the need for a Joint Agency Response;
• identifying whether the child is known to paediatric health professionals who should be represented at the adult mortality and morbidity (M&M) meeting; and attending the adult M&M meeting and completing a standardised Analysis Form for the purposes of Sussex CDOP;
• The Structured Judgement Review approach, or other evidence based structured mortality review tool, should be used to review the quality of clinical care. This, the standardised CDR Analysis Form, and any other notes arising from the adult M&M meeting should be forwarded to Sussex CDOP. The designated doctor for child deaths should help co-ordinate

B. Child Death Review Lead Nurse

• The Child Death Review Lead Nurse role is to lead the Child Death Review Nurse Team, and co-ordinate the CDR process within the local health economy.
• Enables the CDR Service practitioners to signpost families to specialist agencies for bereavement support, and to ensure this has been actioned effectively.
• Lead Nurse in collaboration with the Designated Doctors, will be responsible for the implementation of the local and national protocols and guidance on child deaths, and assuring that recommendations and learning from child deaths has been embedded.
• Provides expert and specialist advice, training and support to key partners within both community and acute settings.
• The post holder, in conjunction with the Designated Doctors and Lead Paediatricians will operationally manage the ‘Child Death Review Service’ on a day to day basis, providing support, leadership, performance management and clinical expertise to the team being accountable for effective, safe and empathetic service delivery.
• The Lead Nurse will be a member of the Child Death Overview Panel for Sussex Safeguarding.

c. Child Death Review Specialist Nurses and Child Death Review Support Nurses

• The child death review nurses will work as key members of the Sussex wide child death review team which sits within the CCG Safeguarding Team to support the Sussex CCGs and local authorities in meeting their statutory duties as detailed in Child Death Review Statutory and Operational Guidance: England (HM 2018) and will involve the following responsibilities:
  • take responsibility, with the lead health professional, for ensuring that all health responses are implemented;
  • work in partnership with other professionals to support the work of the Child Death Review Partnership
  • liaise with other appropriate professionals to respond quickly to the death of a child
  • attend appropriate CDRMs in acute and community settings to represent the ‘voice’ of the parents at professional meetings, ensure that their questions are effectively addressed, and to provide feedback to the family afterwards;
  • ensure information from CDRMs (draft Analysis Forms) are shared with CDOP panel
  • Be a reliable and readily accessible point of contact for the family after the death;
  • Help co-ordinate meetings between the family and professionals as required;
  • Carry out a follow up visit/visits to the family to support and feedback answers to their questions;
  • Support and signpost the family and surviving siblings to other professionals for bereavement
• Child Death Review Nurses will work in collaboration with Head of Safeguarding, Police, Designated Doctors/Nurses, Child Death Review Team, Named Professionals for Safeguarding, Paediatric Staff, Child Death Overview Panel, Chair, CDOP coordinator and other professionals, bereaved families and the voluntary sector to ensure an effective and appropriate response to expected and unexpected deaths of children under the age of 18 years old.

d. Child Death Review Co-ordinator

The responsibilities of the co-ordinator role include but are not exclusive to the following:

• Ensure the effective management of the notification, data collection and storage systems;
• Oversee and administer the eCDOP processes.
• Ensure the effective running of ordinary and themed CDOP panel meetings;
• Be the designated person to whom the child death notification and other data on each child death should be sent;
• Allocate a unique identifier number to a deceased child following receipt of the Notification Form;
• Seek to establish which agencies have been involved with the child or family either prior to or at the time of death and gain receipt of relevant information (Reporting Form);
• Ensure and monitor the effectiveness of the data collection and ensure reports relevant to each child are combined into an anonymised single multi-agency report for review panel members;
• Deal with all correspondence, databases and all relevant paperwork associated with the CDOP process;
• Liaise with the Chair of the Child Death Review Meetings to receive the meeting’s summary notes (draft Analysis Form); and
• Record the CDOP’s conclusions (final Analysis Form) and submit data to the National Child Mortality Database

e. All Staff

• All professionals have a responsibility to notify Sussex CDOP via Sussex online eCDOP Notification within 24 hours of the death of any child of which they become aware, to share information for the purposes of reviewing the child’s death, and to participate in local review arrangements when they have been involved with the child or family.
• Any professional can complete a child death notification form.

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

The child death reveiw flowchart sets out the main stages of the child death review process. 

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

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

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.

All expected deaths should be discussed with the Coroner before completing a Medical Certificate of Cause of Death (MCCD).

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.

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.

All expected deaths need to be reviewed at a CDRM.

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.

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:

• Identify the available facts about the circumstances of the child’s death;
• Determine whether the death meets the criteria for a Joint Agency Response (JAR) - read section 11.1.48 for more information.  If a JAR is required contact the on-call representatives for the police, health and children’s social care so as to initiate the joint agency response;
• consider any immediately available background information from health, police or social services and any concerns arising from this information.
• Determine whether the immediate and underlying cause(s) of death are understood, and if so whether there is a doctor who is in a position to sign a medical certificate of cause of death (MCCD).
• In consultation with the Sussex Coroners it has been agreed that all child deaths should be discussed with the Coroner prior to a MCCD (death certificate) being signed. All unexpected deaths must be referred to the Coroner at the earliest opportunity.
• Consider the safety and wellbeing of any other children in the household.
• Identify how best to support the family.
• Check that arrangements are in place for timely notification of all relevant agencies and professionals
• Consider arrangements for the post-mortem examination, and plans for a visit to the home or scene of collapse by the lead police investigator and specialist nurse/paediatrician
• Determine whether an issue relating to health care or service delivery has occurred or is suspected and therefore whether the death should be referred to the coroner and/or a serious incident investigation
• Determine whether any actions are necessary to ensure the health and safety of others, including family or community members, healthcare patients and staff

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.

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)

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.

 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. 

The Coroner:

• The Coroner must be informed at the earliest opportunity of any violent or unnatural death, sudden death of unknown cause, or death within 24 hours of admission to hospital.
• The Coroner should normally be contacted via the Coroner's Officer.
• The Coroner has control of what happens to the child's body in these circumstances and decides which pathologist will complete the post-mortem.
• As discussed above - all child deaths in Sussex should be discussed with the relevant Coroner before signing a MCCD.

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.

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 guidance should be seen as complementary to the SUDI/C Guidelines and does not replace

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.

A JAR should be triggered if a child’s death:

• Is or could be due to external causes
• Is sudden and there is no immediately apparent cause (incl. Sudden Unexpected Death in Infancy/Childhood: SUDI/C)
• Occurs in custody, or where the child was detained under the Mental Health Act
• Where the initial circumstances raise any suspicions that the death may not have been natural
• In the case of a stillbirth where no healthcare professional was in attendance
• A JAR should be triggered in some cases of collapse or sudden but expected deaths.

When dealing with an unexpected child death all agencies need to follow five principles:

• Sensitive, open minded balanced approach;
• Inter-agency response;
• Sharing of information;
• Appropriate response to the particular circumstances;
• Preservation of evidence

All of these are of equal importance

The aims of the JAR response are to:

• Establish, as far as is possible, the cause or causes of the infant/child’s death
• Identify any potential contributory or modifiable factors
• Provide ongoing support to the family
• Ensure that all statutory obligations are met
• Learn lessons in order to reduce the risks of future infant deaths

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.

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.

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.

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 - (a retinal hemorrhage 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.

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.

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

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.

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 

An Initial Information Sharing and Planning Meeting (IISPM) should be held as soon as possible after the death. This meeting:

• usually takes place on the next working day.
• is a key part of the joint agency response and will usually take place during normal working hours to ensure all relevant professionals can attend  - See the Sussex JAR Flowchart
• should ideally be face to face and should involve the lead health professional, lead police investigator, child death specialist nurse, the primary care team and any other relevant professionals who knew the child or family. The coroner’s officer may be invited to this meeting.
• will be convened and chaired and minuted by Children’s Services. A copy of the minutes should be sent to the coroner, pathologist and the Sussex CDOP co-ordinator.
• will review all of the information available at this stage and identify what further investigations/actions are required and consider the ongoing support needs of the family.

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.

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.

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.

• Some factors in the history or examination of the child may give rise to concern about the circumstances surrounding the death. If any of these are identified it is important that the information is documented and shared with senior colleagues and relevant professionals in other key agencies involved in the investigation. The following list is not exhaustive and is intended only as a guide.

• Previous child deaths in the family

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 injury

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.

• Neglect

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.

• Previous child protection concerns within the family
• Inconsistent information

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.

• Inappropriate delay in seeking help
• Evidence of drug, alcohol or substance misuse particularly if the parents are intoxicated or sedated at the time if the death.
• Evidence of parental mental health problems or learning disabilities
• Domestic Abuse
• History or evidence of domestic abuse.
• Presence of blood

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.

Child suicide should be reviewed in the same manner as other child deaths, with the following expectations:

• all deaths related to suspected suicide and self-harm should be referred to the coroner for
• all deaths related to suspected suicide and self-harm will require a Joint Agency
• the CDRM should include experts in mental health and key professionals involved in the child’s life across education, social services and

• Specific risk factors should be considered, including:

• family factors such as mental illness, alcohol or drug misuse, and domestic violence;
• abuse, exploitation and neglect;
• bereavement and experience of suicide;
• bullying, including on-line bullying;
• suicide-related internet use, including searching for methods and posting suicidal messages;
• academic pressures, especially related to exams;
• social isolation, especially leading to withdrawal;
• physical health conditions that may have social impact, and their treatment;
• alcohol and illicit drugs;
• mental ill health, self-harm, and suicidal ideation;
• Issues relating to self-identity, including gender identity; or
• exploitation, including child sexual exploitation, radicalisation, and gang-related exploitation

Suspected child suicides should, where possible, be discussed at a themed specialist CDOP review with attendant mental health specialists

• This is a very difficult time for everyone. The time spent with the family may be brief but events and words used can greatly influence how the family deals with their bereavement in the long term. It is essential to maintain a sympathetic and supportive attitude, whilst objectively and professionally seeking to identify the cause of death;
• Remember that people are in the first stages of grief. They are likely to be shocked and may appear numb, withdrawn, angry or very emotional;
• The child should always be referred to and handled as if he or she were still alive and his or her name used throughout;
• Professionals need to take account of any religious and cultural beliefs that may have an impact on procedures. Such issues must be dealt with sensitively, whilst maintaining a consistent approach to the investigation;
• All professionals must record any history and background information given by parents or carers in detail. Initial accounts about circumstances, including timings, must be recorded verbatim;
• It is normal and appropriate for a parent or carer to want physical contact with his or her dead child. In all but very exceptional circumstances this should be allowed with discreet observation by an appropriate professional;
• Parents/carers should always be allowed time to ask questions and be provided with information about where their child will be taken and when they are likely to be able to see him or her again;
• Parents should always be made aware that Her Majesty's Coroner will be involved and that a post-mortem will be necessary;
• Staff from all agencies need to be aware that on occasions in suspicious circumstances the early arrest of parents or carers may be essential in order to secure and preserve evidence and to conduct the investigation. Professionals must be prepared to provide statements of evidence promptly in these circumstances

• Ensure that the child is taken to the appropriate area of the Accident and Emergency Department even if they appear to have been dead for some time. The child should not be taken straight to the mortuary.
• Call the duty consultant paediatrician and the resuscitation team. Find out the identity of the people with the child and their relationship to the child. Use the child's first name.
• Allocate a nurse to look after the family to keep them informed about what is happening. The nurse should record any medical or other information they obtain.
• A detailed history and examination are extremely important in the process of trying to identify the cause of death.See Unexpected Death Hospital Pro forma
• A paediatrician should record a detailed verbatim history of events leading up to the death, past and recent symptoms, any resuscitation attempts at home and any family history of childhood deaths or serious illness.
• A full examination should be undertaken by a paediatrician and a careful record of any findings made on a body chart, including:

• The child's general appearance, cleanliness, any blood or secretions around nose or on clothes;
• Marks on skin, bruises, abrasions, other injuries, skin conditions;
• Marks from invasive procedures or resuscitation attempts such as venepuncture, cardiac puncture or cardiac massage;
• Lesions inside the mouth including frenulum/frenum and identifying possible effects of intubation;
• Appearance of retinae, although these may not be clearly seen;
• Any signs of injury to the genitalia or anus.

Ambulance Staff:

• The ambulance service communication centre will immediately notify the police control room when there is a call to the scene of an unexpected child death.
• The recording of the initial call to the ambulance service should be retained in case it is required for evidential purposes.
• Ambulance staff should follow the Joint Royal Colleges Ambulance Liaison Committee Guidelines and the South East Coast Ambulance Service Child Protection Procedures.
  • Do not automatically assume that death has occurred, clear the airway and if in any doubt about death apply full cardiopulmonary resuscitation;
  • Transport the child to an accident and emergency department *(see below);
  • Inform the accident and emergency department giving estimated time of arrival and patient's condition;
  • Record how the body was found - including the position of the child (e.g. prone) clothing worn and the reported circumstances;
  • Note any comments made by the carers, any background information given, any evidence of possible substance misuse and the conditions of the living accommodation;
  • Pass on all relevant information to the accident and emergency department receiving doctor and to the police.
• Any suspicions should be reported directly to the police and the receiving doctor at the hospital as soon as possible.

• *All children who suffer cardiac and respiratory arrest must be taken to hospital, this will not be a difficult decision on most occasions as the child or baby will be actively resuscitated. However, there are some occasions, although extremely rare, when the decision is made not to resuscitate, historically these cases have been left at home, it is vital that now, even these cases are transported to hospital. This does not mean that resuscitation should be undertaken just to facilitate transport.

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:

1. Explain fully the reason for transport to hospital to the parents;
2. Inform the receiving hospital via a pre-alert through the Emergency Despatch Centre (EDC) before leaving scene. EDC should make arrangements with the paediatrician on duty to meet the family, usually within the A&E department;
3. Update the police regarding the movement of the patient if they are not already present;
4. Drive under routine driving conditions, ensuring the comfort of the accompanying parents/ carers as much as possible.

• Parents have the right to find out what has caused their child to die and getting the investigation underway as soon as possible will give them the best chance of getting that answer.

• 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) or leaving the patient at home will remain the appropriate course of action.

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:

• A detective inspector (DI) must attend the scene. This will preferably be a Safeguarding Investigation Unit DI. This will not apply in incidents where the death is as a result of a road traffic collision (RTC). In these cases the duty senior investigating officer (SIO) arrangements for the investigation of RTCs will apply.

• The DI attending the scene of the death will:

• • Assess and appropriately preserve the scene;
  • Decide what level of investigation is necessary;
  • Discuss the circumstances with the duty senior investigating officer (SIO). If the death is thought to be suspicious the SIO must be contacted immediately;
  • Consider the need for seizure of exhibits and any photography/video recording;
  • Discuss with the Coroner's officer/Coroner and paediatrician of the need to undertake a skeletal survey prior to the PM, and if authorised arrange in consultation with the consultant paediatrician. Arrangements will vary between Coroner's areas
  • Confirm with the Ambulance Service that the child will be taken to an A&E department
  • Where the death is initially unexplained, ensure the child is examined at the hospital by a consultant paediatrician;
  • Ensure the attendance of an appropriate police officer at the PM to fully brief the pathologist.
  • Notify circumstances of death to CDOP Co-ordinator

• A detective sergeant, or if unavailable a detective constable, from the relevant Safeguarding Investigations Unit should attend. When Safeguarding Investigations Unit officers are not on duty the Divisional Duty DS or DC should attend the scene but hand over any enquiries to the Safeguarding Investigations Unit at the earliest opportunity. They will:

• • Act as a source of advice on child protection matters to the DI;
  • Consider any apparent child protection issues at the scene;
  • Consider the needs of any siblings;
  • Undertake enquiries at the direction of the DI;
  • Discuss and if appropriate arrange a joint home visit with a consultant paediatrician or designated rapid response nurse;
  • Inform the Coroner's Officer (see below);
  • Initiate immediate planning discussion
  • Ensure in liaison with the paediatrician that all medical records and a copy of the pathologists enquiry form are made available at the PM;
  • Request and retain the relevant personal child health record form the parents and provide copies to health professionals when requested;

• A Coroner's Officer from the relevant Coroner's Office will attend in most areas of Sussex. They will:

• • Liaise with the DI/DS at the scene;
  • Liaise with the Coroner;
  • Discuss the need for skeletal survey with the DI/DS
  • Consult the paediatrician re marks and injuries;
  • Advise re authority to take relevant samples as agreed by the coroner;
  • Ensure all forms are completed and are available for them to forward to the paediatric pathologist;
  • Advise re planned arrangements for post mortem examination (e.g. when, where, who by if possible. This information may not be available until later or the next working day);
  • Liaise with parents about mementos if these have not been taken in A&E;
  • Liaise with family regarding retention of tissue and organs and obtain necessary signatures;
  • Ensure, in liaison with the paediatrician, that all medical records are forwarded to the paediatric pathologist prior to the PM;
  • Ensure parents are aware of available support organisations;
  • Attend the post mortem examination if necessary (e.g. forensic);
  • Liaise with pathologist regarding histology etc and ensure family, paediatrician and GP are updated as appropriate;
  • When post mortem report is received from pathologist, forward copy to paediatrician, police SIO and GP;
  • The paediatrician/lead health professional must discuss how the pm report should be shared with the family and arrange to discuss the pm report with the parents;
  • Obtain reports and statements for inquest (if relevant)

• Role of the Police:

• The preservation of the scene and the level of investigation will be relevant and appropriate to the presenting factors. This must be done sensitively and where possible avoiding wearing uniform.
• Officers initially attending the scene should ensure it is preserved until the DI attends. Any relevant items should be drawn to their attention, but the DI will decide what items will be retained and removed from the scene.

Consideration should be given to:

• Commencing a scene log;
• Photographs/video of the scene;
• Only retain bedding if there are obvious signs of forensic value such as blood, vomit or other residues. The routine collection of bedding is neither necessary for any investigative purpose, nor appropriate for the family;
• Retain items such as the child's used bottles, cups, food or medication;
• The child's nappy and clothing should remain on the child but arrangements should be made for them to be retained at the hospital. If the nappy has already been removed from the baby prior to police arrival ensure that it is recovered from the parents and handed to the paediatrician at the hospital for possible laboratory investigation. There is no need to retain any other clothing unless the baby's clothes have been changed prior to the arrival of the police;
• Records from the ambulance monitoring equipment which may be of evidential value; it is possible this information may only be retained for 24 hours.

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"

• If it is necessary to remove items from the house, do so with consideration for the parents. Explain that it may help to find out why their child has died. Ask the parents if they want the items returned.
• Record any environmental features which may indicate neglect or could have contributed to the death such as temperature of scene, condition of accommodation, general hygiene and the availability of food/drink.
• 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.

• Role of the Police:

• The preservation of the scene and the level of investigation will be relevant and appropriate to the presenting factors. This must be done sensitively and where possible avoiding wearing uniform.
• Officers initially attending the scene should ensure it is preserved until the DI attends. Any relevant items should be drawn to their attention, but the DI will decide what items will be retained and removed from the scene.

Consideration should be given to:

• Commencing a scene log;
• Photographs/video of the scene;
• Only retain bedding if there are obvious signs of forensic value such as blood, vomit or other residues. The routine collection of bedding is neither necessary for any investigative purpose, nor appropriate for the family;
• Retain items such as the child's used bottles, cups, food or medication;
• The child's nappy and clothing should remain on the child but arrangements should be made for them to be retained at the hospital. If the nappy has already been removed from the baby prior to police arrival ensure that it is recovered from the parents and handed to the paediatrician at the hospital for possible laboratory investigation. There is no need to retain any other clothing unless the baby's clothes have been changed prior to the arrival of the police;
• Records from the ambulance monitoring equipment which may be of evidential value; it is possible this information may only be retained for 24 hours.

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"

• If it is necessary to remove items from the house, do so with consideration for the parents. Explain that it may help to find out why their child has died. Ask the parents if they want the items returned.
• Record any environmental features which may indicate neglect or could have contributed to the death such as temperature of scene, condition of accommodation, general hygiene and the availability of food/drink.
• 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.

Police Staff:

• Normally the Ambulance Service will transport a child's body from the scene to an A&E department. However, on rare occasions this may not occur, and the child's body may be taken to a mortuary. This could be appropriate in circumstances where an older child has died (16-18) and it is clear what the cause of death is likely to be, for example suicide by hanging.
• Any decision to take a body directly to a hospital or a mortuary, must only be made following a discussion with a consultant paediatrician in order to consider the need for an examination of the body, what tests should be arranged, and for medical information to be collated. However, where the cause of death appears explained, for example, following a road traffic collision, or where a Home Office pathologist has examined a body prior to arrival at the hospital, the examination and collection of samples by a paediatrician is unlikely to be necessary.
• If the parents/carers wish to accompany the child's body from the home to the hospital, then this should be facilitated, unless the death is viewed as unnatural. Ensure that they are accompanied by police or coroner's officer. On those occasions, a parent/carer may insist on physically holding the child whilst going to the hospital again this should be allowed, but they must be under the control of a police officer.
• Police officers need to be aware of other professionals' responsibilities, i.e. resuscitation attempts, taking details from the parents, examination of the dead child and looking after the welfare needs of the family. Officers may need to wait until some of these things have happened and take details from these professionals before being introduced to the parents. This is where liaison and joint working is essential as there may be urgent evidential reasons why the police need to take immediate action. It is strongly advised that the Safeguarding Investigations Unit is utilised for such liaison wherever possible.

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.

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.

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.

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. 

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.

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.

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 

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 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.

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 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.

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.

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 Designated Doctor/CDR specialist nurse and lead police investigator as required.

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:

• review any emerging information
• consider what is known about the cause of death and any possible contributory factors
• determine whether any further investigations or enquiries are needed
• confirm what information can be provided to the family, how this will be shared, and by whom

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 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.

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

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.

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. 

In all cases, the aims of the CDRM are:

• To review the background history, treatment, and outcomes of investigations, to determine, as far as is possible, the likely cause of death;
•  To ascertain contributory and modifiable factors across domains specific to the child, the social and physical environment, and service delivery;
•  To describe any learning arising from the death and, where appropriate, to identify any actions that should be taken by any of the organisations involved to improve the safety or welfare of children or the child death review process;
•  To review the support provided to the family and to ensure that the family are provided with the outcomes of any investigation into their child’s death; a plain English explanation of why their child died (accepting that sometimes this is not possible even after investigations have been undertaken) and any learning from the review meeting;
•  To ensure that CDOP and, where appropriate, the coroner is informed of the outcomes of any investigation into the child’s death; and
•  To review the support provided to staff involved in the care of the child

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 

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.

With the exception of hospital based mortality meetings, the CDRM should be chaired by a suitable lead health professional.

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 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

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

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.

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

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 

• The functions of CDOP include:

• To collect and collate information about each child death, seeking relevant information from professionals and, where appropriate, family members;
• To analyse the information obtained, including the report from the CDRM, in order to confirm or clarify the cause of death, to determine any contributory factors, and to identify learning arising from the child death review process that may prevent future child deaths;
• To make recommendations to all relevant organisations where actions have been identified which may prevent future child deaths or promote the health, safety and wellbeing of children;
• To notify the Child Safeguarding Practice Review Panel and local Safeguarding Partners when it suspects that a child may have been abused or neglected;
• To notify the Medical Examiner (once introduced) and the doctor who certified the cause of death, if it identifies any errors or deficiencies in an individual child's registered cause of death. Any correction to the child’s cause of death would only be made following an application for a formal correction;
• To provide specified data to the NCMD via eCDOP
• To produce an annual report for CDR partners on local patterns and trends in child deaths, any lessons learnt and actions taken, and the effectiveness of the wider child death review process; and
• To contribute to local, regional and national initiatives to improve learning from child death reviews, including, where appropriate, approved research carried out within the requirements of data protection 

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 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.

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.

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.

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.

CDR partners must at such intervals as they consider appropriate, prepare and publish a report on

• What they have done as a result of the arrangements under this section; and
• How effective the arrangements have been in practice

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. 

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.

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.

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.

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.

Themed CDOP panels should develop in line with local circumstances. The panels below are given as examples:

• Neonatal panel
• Cardiac panel
• SUDI/C panel
• Trauma panel
• Suicide/self-harm panel
• Learning disability panel

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.

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.

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

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. 

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.

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

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

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.

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.

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

The CDR nurse can act as a liaison between family and professionals involved in the process around the death of the child.

Bibliography

JAR flowchart

IISP meeting minutes template.Dec.2019 (003)

Unexpected Death Hospital Pro forma