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Norfolk LSCB Protocol 20
Multi-agency Guideline for the
Management of Sudden Unexpected Death in
Infancy and Childhood
Norfolk LSCB Protocol 20

CONTENTS

Page No.

Introduction
Ambulance Staff Procedures and Guidance
Procedures
Guidance 6
Initial action at the scene (other than at A&E Dept) General Practitioners Procedures and Guidance
Health Visitor Procedures and Guidance
Hospital
Procedures
Guidance
Inter-agency
Algorithm for the initial management of sudden death in childhood Appendices
Appendix 2 - Checklist of whom to inform about the death Norfolk LSCB Protocol 20
1. INTRODUCTION
Objective of Guideline

• To ensure that bereaved families are offered optimal support during a traumatic • To ensure a thorough investigation of the cause of a child’s death with emphasis on history, examination and investigations • To ensure pathologists and coroners have access to this information to give the best opportunity to make a diagnosis of natural death (the majority) and to identify the minority that are unnatural • To protect siblings and subsequent children, whatever the cause of death. • To guide professionals towards best practice with regards to all of the above • To provide professionals with clear procedures when a child dies unexpectedly Rationale for the recommendations

These guidelines have been written to address the above objectives, building on established
good practice in Norfolk and in the light of the recommendations from the Royal Colleges of
Paediatric and Child Health, and Pathologists.
Whilst it is acknowledged that most unexpected deaths in infants and children occur in the first two years of life the guidance in this document should be considered in the investigation of children and young people up to 17 years of age who die. The recommendations in this document do not apply to the investigation of the death of a child where the circumstances, whilst unexpected, are readily apparent e.g. a motor vehicle accident. It is intended that this document supersedes the previous ACPC/LSCB guidance and that it now forms a new framework for multi-agency co-operation at the time of an unexpected death of a child. Broad recommendations

• Every sudden unexpected death in childhood should prompt a multi-disciplinary investigation by Health professionals, Police and Children’s Services • All family members are treated with kindness and sensitivity by staff of all • Careful history, examination and appropriate investigations underpin the process, just as in any other clinical or investigative scenario • Careful documentation of the resuscitation, history and examination is important References/ source documents

a) Fleming PJ, Blair PS, Sidebotham P, Hayler T. Investigating sudden unexpected deaths in infancy and childhood and caring for bereaved families: an integrated
multiagency approach. BMJ 2004; 328: 331-4.
b) Sudden unexpected death in infancy. The report of a working group convened by Norfolk LSCB Protocol 20
The Royal College of Pathologists and The Royal College of Paediatrics and Child Health. Chair: The Baroness Helena Kennedy QC. Published September 2004. Also available on the internet at: http://www.rcpch.ac.uk/publications/recent_publications/SUDI report for web.pdf c) The Foundation for the Study of Infant Death’s ‘Responding when a baby dies’ campaign. Recommendations for a joint agency protocol for the management of sudden unexpected deaths in infancy. FSID, December 2002. Also available on the internet at: http://www.sids.org.uk/fsid/key_points.pdf d) Norfolk LSCB Protocol 20 e) NNUH SUDI Guidelines. 2006 . Chris Upton, Richard Beech, Dulmini Ranasinge f) ACPO Guidelines Infant Deaths 2002 General Guidance
Parents suffering a terrible tragedy need sensitive support to help deal with their loss. It is every family’s right to have their child’s death properly investigated. Families desperately want to know what happened, how the event could have occurred, what the cause of death was and whether it could have been prevented. This is important in terms of grieving, but is also relevant to a family’s high anxiety about future pregnancies and may identify some hidden underlying cause, such as a genetic problem. If there happens to be another sudden death in the family, carefully conducted investigations of an earlier death would be extremely helpful. It is well recognised that it may not be possible to establish a cause of death based on post mortem examination alone. The clear recommendation, inherent in this and other guidelines, is that all children who die suddenly and unexpectedly in the community are transferred to A&E. This is regardless of whether the chances of successful resuscitation are thought to be negligible, and specifically so that the actions listed in this guideline can be undertaken. When the Police are concerned that a death may be due to intentional harm, it is important
that the principles of this protocol still apply. In exceptional circumstances, e.g. when an
intentional cause of death is readily apparent, it is particularly important that all agencies co-
operate closely and jointly determine how best to proceed with the investigation.
Some acute life-threatening events, which do not necessarily result in death, may also require interagency discussions. This guideline would be applicable for any event that is truly life-threatening and unexpected or for which there is an element of suspicion. If a child in such circumstances does require transfer to another hospital it is vital that a good chain of communication is created between all the professionals investigating the event locally and their counterparts in the receiving hospital/district. Norfolk LSCB Protocol 20
2. AMBULANCE STAFF PROCEDURES AND GUIDANCE
Following receipt of a call to the Ambulance Control Centre the nearest available Emergency Response will be sent to the scene, supported by a second Emergency response if possible The recording of the initial call should be retained in case it is required for evidential purposes Upon arrival the child should be assessed with a Primary Survey. If appropriate Advanced or
Intermediate Life Support should be commenced with immediate transport to the nearest
A&E Department with a hospital alert of expected time of arrival

The crew attending the scene will observe the scene and the position of the child at the time of their arrival and include these details in the patient Report Form If following the Primary Survey and checks for signs of life the child is obviously dead, the
crew at the scene should liaise with the police

The crew should await the arrival of the Designated Senior Investigating Officer (SIO)

The SIO will make a decision if the scene is a crime scene. If this is the case the child will
remain at the scene and the SIO will sign the Ambulance Patient Report Form. The
ambulance may then leave the scene

In all other circumstances the Ambulance will wait at the scene and with the agreement of the SIO transport the child and immediate family to the nearest A&E department with a Hospital Alert call of expected time of arrival. Norfolk LSCB Protocol 20
3. POLICE PROCEDURES AND GUIDANCE
Introduction
This protocol is compliant with the Association of Chief Police Officers (ACPO) National Centre for Policing Excellence CENTREX doctrine ‘Guidance on Investigating Child Abuse And Safeguarding Children’ 2005 and reference should also be made to the ACPO Murder Manual. Throughout this protocol there will be references to key tasks which officers either attending or managing the investigation will need to take into consideration. It is important for police officers to remember that most unexplained child deaths have natural causes. Police actions therefore need to be a careful balance between consideration for the bereaved family, and the possibility that a crime has been committed. Who should attend?

Resource deployment will be at the discretion of the Contact & Dispatch Centre and will be influenced by the location at which the apparently dead child has been reported to be. Many of these deaths will involve police attendance at Emergency (A&E) Departments, where actions will be necessarily different to those where police attend other premises. Police attendance should be kept to the minimum required. For example, several police officers arriving at a private house can be distressing, especially if they are uniformed officers in marked police vehicles. Whenever possible consideration should be given to the initial response being from plain clothed specialist officers, but this may not be possible if an emergency response has been requested. In any event, the Area Detective Inspector will be the Designated Senior Investigating Officer
(SIO) in the first instance. If subsequent assessment considers the death to be
suspicious then out of hours the on call Force SIO (D/Supt or D/C/Insp) will be
contacted and take the lead role in the investigation assisted by the Area Detective
Inspector. If the death is within office hours the Area Detective Inspector will contact
the Area D/C/Insp who will take the lead role. The on call SIO can be contacted at all
times for advice.

Samples and Pathology
In all cases the police should request for the post mortem to be undertaken by a paediatric pathologist or a pathologist who has paediatric expertise. If the death is felt to be suspicious then the Home Office pathologist should perform the post mortem and if he/she lacks paediatric experience then he/she should be encouraged to work alongside a paediatric pathologist to maximize the opportunity for recovery and interpretation of evidence Good co-operation between the police and the paediatrician is very important.
The paediatrician will carefully follow the protocol to ensure that a thorough
external examination is undertaken together with relevant investigations.
However, prior to any examination or samples being taken by the paediatrician
where the death is suspicious there must have been a discussion and
agreement with the SIO and HM Pathologist. Furthermore for suspicious deaths
agreement must be reached as to where the body will go for the post mortem
Norfolk LSCB Protocol 20
and samples. The SIO will contact the Acute Paediatrician on call (see appendix
2) and contact the HM Pathologist through the Contact & Dispatch Centre.

Where the deceased child is at an Emergency (A&E) Department, consideration must be given to the deployment of resources at the address from which the child came, prior to its attendance at Emergency (A&E) Department. Officers maintaining the integrity of any such scene should use unmarked vehicles where possible. Initial action at the scene
(other than at Emergency (A&E) Department)
The first priority (as in any such case) will be the provision of medical assistance to the child. If an ambulance is not present one must be called immediately, and consideration given to attempting to revive the child, unless it is absolutely clear that the child has been dead for some time. (Ambulance Service Personnel will remain on scene until their release is confirmed by the Designated SIO.) Officers in attendance will need to show compassion and sensitivity. Careful thought needs
to be given to the use of police radios and mobile telephones. Police terminology such as
“scene of crime” should be avoided. Good practice is to establish and use the child’s name
whenever referring to the child.

The Area Detective Inspector will attend as the Designated SIO. Amongst other considerations, he/she will : • Consider release of Ambulance Service Personnel and vehicle as soon as possible, ensure arrangements are made to secure all relevant documentation. • Arrange liaison with Children’s Services to prompt a strategy meeting. 3.10 The Coroner’s Officer must be notified as soon as possible. As well as the usual functions they perform, their experience in dealing with sudden deaths and bereaved families will be invaluable in explaining to the parents/carers what will happen to their child’s body and why. It may be of assistance for the Coroner’s officer to attend the scene and then liaise directly with the Coroner as required or at the direction of the SIO. The SIO and the Coroner’s Officer should continue to liaise closely throughout the investigation. 3.11 An explanation should be given, where appropriate, to the parents/carers that police attendance at such deaths is routine in order to try and determine how the child died. 3.12 An early record of events from the parents/carers is essential, including details of the child’s recent health. All comments should be recorded. Any conflicting accounts should raise
suspicion but it must not be forgotten that any bereaved person is likely to be in a state of
shock and possibly confused. Repeated questioning of the parents/carers by different
police officers and other professionals should be avoided at this stage if at all
possible.
Initial action at Emergency (A&E) Department
3.13 The SIO will attend the Emergency (A&E) Department as soon as practicable in order to consult with the Senior Paediatrician in order to jointly review the presenting information and
Norfolk LSCB Protocol 20
to consider the appropriate course of action. 3.14 Issues such as handling of the deceased child will require particular care and sensitivity. There should be minimal handling by medical staff only until a full assessment of the
situation can be made by the SIO in conjunction with the Senior Paediatrician. This should
include a discussion about offering parents a lock of hair, hand or foot print or other
memento.
3.15 In any event, the deceased child must not be removed from the Emergency (A&E)
Department until after the SIO/Senior Paediatrician have had their joint discussion. 3.16 During this joint discussion consideration will be given to forensic and pathology issues which will include retention of the deceased child’s clothing and, in particular, any nappy
and contents.
3.17 If the child has been certified as deceased then details of the person declaring death must be obtained as well as the relevant time. Similarly, details of any Ambulance Personnel or method of transport of the deceased child to the Emergency (A&E) Department, together with what sort of medical intervention or assistance attempted, must be established for the information of the SIO. 3.18 Attendance at the Emergency (A&E) Department should be kept to a minimum and consideration must be given to preserving any other place as a potential scene of where
death occurred. Similarly the advice at 3.3 above will apply.
The scene

3.19 The preservation of the scene and the level of investigation will be relevant and appropriate 3.20 Officers initially attending the scene should ensure it is preserved until such time as the SIO gives any further instruction. Any relevant items should be drawn to the attention of the SIO, who will assess the circumstances and information available. Additional resources such as photographers will be considered at this stage and the SIO will decide what items, if any, will be retained or removed from the scene. 3.21 If it is necessary to remove items, this will be done with due consideration for the parents/carers, who should be asked if they want the items returned. 3.22 If parents/carers ask to hold the deceased child this can be permitted but should be done with the knowledge of the SIO and in the presence of a Police Officer or other professional Other issues

3.23 In all cases H.M. Coroner will be kept informed of the progress of the investigation and • Completion of Sudden Death A42 document. • Continuity of identification of the deceased child. • Attendance at post-mortem examination Norfolk LSCB Protocol 20
Away from the scene

3.24 In all but exceptional circumstances (e.g. at a suspicious child death police response will be in accordance with the ACPO Murder Manual) the body of the deceased child will be
conveyed by Ambulance to the relevant Emergency (A&E) Department (i.e. not to the
mortuary). This is because of the support networks at Emergency (A&E( Departments
3.25 If the parents/carers wish to accompany the child’s body from the home to the Emergency (A&E) Department, then this should be facilitated. They must be accompanied by a
Police/Coroner’s Officer
Subsequent actions
3.26 The SIO or his/her nominee (in certain circumstances a Family Liaison Officer may be appointed) will continue to maintain contact with the family and keep them informed of any developments. Initial strategy discussions
3.27 The SIO will attend in accordance with the joint agency protocol 3.28 Around 8-12 weeks after the child’s death a further inter-agency case meeting should be held to review the findings of the post-mortem report and any other information gained about the child, their family and circumstances leading to the death. When appropriate, this meeting will mark the closure of the investigation into the child’s death. This meeting should be arranged by Social Care Services, following consultation with the Police and will be dependent on the progress of the Police/Coroner’s investigations Retained items

3.29 At the earliest opportunity after enquiries are completed, (after consultation with the Coroner’s Officer), any items the family wish to have returned, should be returned to them. 3.30 All police documentation will be removed and the property will be returned if appropriate in new/clean wrapping/bags. If soiled articles were taken, parents/carers should be asked about their return, and if they would like them cleaned prior to return. 3.31 An appointment should be made with the parents/carers to return any property, remembering that this could be a significant event for them. Norfolk LSCB Protocol 20

4. GENERAL PRACTIONERS
PROCEDURES AND GUIDANCE

Occasionally the GP is the first professional to attend the scene of an Unexpected Death in Childhood and in general the same guidance applies to GP as the ambulance service It is important that if the GP is the first at the scene that they take responsibility for contacting the Police and the Coroner’s Officer via Police Headquarters The GP may not issue the death certificate under these circumstances Even if the GP determines that the child has died it is important that the body of the child is taken to the A&E department and not to the mortuary If the GP decides to pronounce death he/she should consult with the senior police officer present before allowing the Ambulance Service to remove the body of the child to the hospital The primary healthcare team (GP and Health Visitor) are very important in supporting the family and liaising with the hospital medical staff. (see Hospital guidance). Norfolk LSCB Protocol 20

5. HEALTH VISITOR PROCEDURES AND GUIDANCE

If you are first on the Scene

Check the ambulance has been called and commence resuscitation (follow If the mother goes to hospital with the child, check on the care of the siblings. If the mother is left alone, arrange for her to be supported by her partner, member of her family or friend Give the parents/carers a number where they can contact you Inform the GP and your line manager and the Named Nurse, Safeguarding Children Spend time listening to the parents. Mention the baby by name and do not be afraid Ensure documentation of the event is a true reflection as per Nursing and Midwifery Health Visitor to arrange clinical supervision for personal/professional support. If you learn later a child has died

Inform Child Health Department of infant death as per standard 24 Must liaise with other professionals, i.e. paediatrician, police, GP, midwife and Health visitor team will make health visitor records available A request for the Parent Child Health Record should be made from the parents/ carers (return the Parent Child Health Record to the parents/carers at a later date) Where possible a joint visit with police/paediatrician and/or GP Ensure parents/carers have health visitor contact details and follow up support Inform line management and ensure on-going liaison with other professionals Health visitor to arrange clinical supervision for personal/professional support. Other Information

FSID ‘When a Baby Dies Suddenly and Unexpectedly’ May 2005 DOH/ ‘A Guide to Post Mortem Examination Procedure Involving Baby/Child’ Aug 03 Sudden Death and the Coroner ‘Coroner’s Post Mortem and Inquests – Information for suddenly bereaved people’ – Victims Voice 2002
Full details of how professionals can support families can be found in the FSID
Guidelines or www.sids.org.uk
Norfolk LSCB Protocol 20

6. HOSPITAL PROCEDURES AND GUIDANCE
Informing the family of the death
When the baby has been pronounced dead an experienced Paediatrician, preferably a Consultant, should break the news to the parents, having first reviewed all the available information The interview should be in the privacy of an appropriate room. A support nurse The family should be treated with respect and honesty. They should be allowed Unless there is an obvious cause of death, it is usually best to say that an opinion cannot be given until after the post-mortem examination It may be appropriate to explain that in most sudden unexpected deaths in infancy the cause cannot be found and the death is then usually registered as Sudden Infant Death Syndrome, or a similar term, often called Cot Death by lay people It is wise not to speculate about the cause of death in an older child unless there are any very definite clues to aetiology from the history or examination Explain that any sudden death of unknown cause has to be reported to the coroner, who will require that a post-mortem examination should be carried out and that the police should visit the home. The police have a duty to investigate any sudden unexpected deaths at any age Explain that we need to liaise with many other professionals to best understand the cause of death. This will include the police but also specialists in Health, and Children’s Services (Social and Education) Explain that the pathologist, before he/she starts the post-mortem examination will need to know everything about the child’s previous history and health and about any illnesses in other members of the family With this in mind explain that a more detailed history will be helpful at some stage It is helpful for parents to know what the post-mortem examination involves, including the retention of tissue samples. Although consent is not required to perform a coroner’s post mortem, the family may consent to retention of blocks and slides as per usual. The coroner or pathologist may contact the family at home to give further information. 6.2 Full examination
This should be carried out as soon as resuscitation has been completed or abandoned and should be done by an experienced Paediatrician. If there is concern that the death may have been caused intentionally then the examination Norfolk LSCB Protocol 20
should take place following consultation with the senior police officer present An immediate careful record should be made. This record is a legal document, it should give the time as well as the date, and should be signed legibly, as for any medical records Features to be recorded include the following: - General appearance, particularly looking for dysmorphic features - State of nutrition and cleanliness - Weight (freshly measured, without clothes or equipment), length and head circumference. Plot these on an appropriate centile chart - Skin and rectal temperature - Marks from invasive or vigorous procedures, such as venepuncture, intraosseous needles or cardiac massage or puncture - Rashes and other skin conditions - Any other marks, including bruises and abrasions on the skin - Signs of bony injuries, particularly to the ribcage. If chest trauma present consider whether it is likely to be due to the resuscitation - Appearance of the retinas - Any lesions inside the mouth (allowing for effects of intubation), state of frenulae - Any signs of injury to the genitalia or anus Further measure: Keep all clothing removed from the child in labelled paper bags, which should be folded over at the top and closed with tape. Do not use plastic bags or staples. (The clothing may assist the pathologist, and may occasionally be required for forensic examination). Specimen collection – see table on page 15

A bedside blood sugar should always be checked during resuscitation attempts – if necessary this can be done on marrow aspirated at intraosseous needle insertion This is a basic checklist – please use clinical acumen to decide if other tests might be helpful (e.g. anti-convulsant level in child with epilepsy, blood and urine ketones, HbA1c and accurate lab sugar in child with diabetes Blood should be obtained by cardiac puncture if enough blood is not obtained during the resuscitation attempt – please document site of puncture in notes Urine should be obtained by catheterisation using a sterile technique. This is more reliable and less traumatic than a suprapubic aspirate (SPA). Only attempt SPA if catheterisation is not possible - please document site of puncture in notes CSF should be obtained by lumbar puncture – please document site of puncture and if tap traumatic or CSF uniformly blood stained Please ring the relevant laboratories to explain the situation and the need for a chain of responsibility. (Use the pro forma on page 9). Do not rely on requesting via ICE alone Ask the laboratory to store the samples that cannot be analysed straight away Norfolk LSCB Protocol 20
A chain of responsibility must be established for all samples taken, in case a forensic investigation is required. One individual must take the samples to the laboratory – never use the chute. Laboratory staff receiving samples must sign for them. Please document in the notes As microbiology samples need to be sent to the laboratory out of the Hospital, the chain of responsibility is more difficult to maintain. In order to maintain the chain, the on-call microbiology technical will need to be called in to accept, sign for, transport and analyse the blood, urine, CSF and any other cultures. If not the Police may transport Request that the neonatal Guthrie card is analysed via the Biochemical Screening Unit at Addenbrooke's, if unable to obtain a sample at death Please send a request card to radiology for skeletal survey to be carried out Norfolk LSCB Protocol 20
Samples to be taken during resuscitation or once child confirmed dead
∗Most important samples - therefore give priority if difficulty encountered in obtaining fluid.
Handling
Test Taken
Date/time
Aspirate (NPA), throat & nose swabs Surface swabs – from any visible lesions Print Name
Designation
Signature
Date/time
The above samples were taken to the laboratory/transport by:
The above samples were received by transport (delete if not applicable):
The above samples were received by the laboratory:
Norfolk LSCB Protocol 20
History
The initial history should be obtained as sensitively as possible during resuscitation and as appropriate afterwards. The identity of the people present and their relationship to the child needs to be ascertained. Make detailed records, including who is present and what was said. It may be appropriate to undertake the history taking with the Police present in order to save the family the ordeal of duplicating the task The A&E and Hospital notes will be sent to the Pathologist soon after death. To facilitate later discussions make sure that everything is photocopied, so that the Consultant Paediatrician can refer to the notes. The Police may also request a copy of the clinical record Discretion is needed as to the amount of detail that can be recorded in the first instance. It is not wise to ask distraught parents very detailed questions about the pregnancy or other siblings. Confine the first interview to relevant detail about the immediate history and then allow the family a break Aim to come back to ask more detailed questions after an interval. If it is known that a visit is possible by a SUDI Professional, a lot of the background information can be left to that visit. If, however, such a visit is not feasible, it is necessary to cover as much ground as possible on the day of death, sensitively allowing for the state of mind of the parents See Appendix I from the Kennedy Report for the suggested full history The Acute Consultant Paediatrician should request and review all hospital records of the child and siblings. If relevant, notes for any children should be requested from other hospitals that have cared for them If the post mortem is to take place in another hospital the entire clinical record The later multi-disciplinary discussions should ensure that a professional (in time the SUDI Paediatrician) has taken on the task of reviewing all General Practice and Community Child Health notes for all the children in the family All health professionals must record the comments of parents/carers in detail, in case future discrepancies or suspicious circumstances develop It is important to make early contact with Children’s Services to ascertain whether concerns have been expressed about the family. Checklist of whom to inform about the death
- see Appendix 2
Supporting bereaved parents
- Ref. Appendix 2
For deaths in infancy, hand out the booklet: “When a baby dies suddenly and unexpectedly’’ from the Foundation for the Study of Infant Deaths (FSID). Copies Norfolk LSCB Protocol 20
of the booklet are available in the A&E department Offer to inform the FSID (0870 787 0885). They will contact the family and send a free phone card to contact their Help-line (0870 787 0554). Please fill in the form if requested by the parents The FSID provides counselling for affected families and professionals. Any doctor or nurse involved in an unexpected child death could also contact the FSID help line For deaths in older children there are many avenues of support, the exact details of which will depend on individual circumstances. There is a local Children & Grief Directory available in A&E and Paediatric Departments, which contains much useful information about support and counselling for bereaved families The on-call Acute Paediatrician will maintain responsibility for ensuring that the family receives appropriate support. It may be appropriate to do this by supporting other professionals who already know the family The Acute Paediatrician will liaise with the family, to feedback early post-mortem results and to ensure appropriate ongoing support. Although the Acute Paediatrician will provide information to the multi-disciplinary discussions, this should not detract from the vital role as a support for the family The family will require counselling, usually between 4 and 8 weeks after the death. The Acute Paediatrician and SUDI Professionals should liaise to decide who will undertake this The Care of Next Infant (CONI) scheme operates locally to support families with children born following a cot death. The programme offers a flexible approach with supportive measures including weekly health visitor home visitors, apnoea monitors, weighing scales/charts and symptom diaries If there are other young children in the family and especially if the dead child is from a multiple birth, consider urgent institution of the CONI scheme. To suppress lactation

Bromocriptine 2.5 mg orally, twice a day for 2 days followed by Bromocriptine 2.5 mg orally once a day for 14 days (to take just after food) 30 tablets required Domperidone 10 mg take 20 minutes before intake of bromocriptine, 30 tablets Norfolk LSCB Protocol 20

7. Inter-agency Working
All unexpected child deaths must be treated as a multi-agency child protection investigation. Surviving siblings may be the subject of enquiry under Section 47 of the Children Act 1989. Initial Strategy Discussion
A multi-agency strategy meeting will be convened by Children’s Services within 3 days of the
child’s death to share information relevant to the investigation of the death and to co-
ordinate support for the parents/carers. The police officer responsible for investigating the
child’s death or their representative must be present at this meeting.
For each agency to share information from the current or previous case notes or other records which may shed light on the circumstances leading to the child’s death. This includes previous and current medical and family history to help exclude a possible underlying medical condition, parental substance abuse, violence etc. To ensure a co-ordinated bereavement care plan for the family To enable consideration of any other child protection risks to siblings or other Contributors to the strategy discussion may include: Health – information from the doctor that declared death, family health visitor, school health advisor, general practitioners, acute consultant paediatrician on call, the A&E Department and the Ambulance Service Relevant information from this meeting should be shared with the pathologist and the Coroner. Local Case Discussion Meeting
The post mortem results and the investigation will normally be completed between 8-12
weeks after the death occurred.
A multi-agency meeting should then be organised by Children’s Services or the consultant
paediatrician, ideally in the GP’s surgery, including the health visitor, school health advisor,
GP, coroner, or coroner’s officer, paediatrician and, when appropriate, the social worker.
The meeting should be chaired by the paediatrician.
The aims of the meeting are:
Share and review the outcome of the investigation If possible, close the investigation Address any outstanding questions about the cause, implications for the family and At this meeting all relevant information concerning the death, the child’s history, family history and subsequent investigation should be reviewed. The decision about inviting parents should be made by professionals who know the family well. If parents are not invited, a separate meeting should be organised to inform parents of the outcome of the local case discussion. Norfolk LSCB Protocol 20
Algorithm for the
initial management of
Sudden Unexpected
death of an infant or child
sudden death in
childhood
Strategy Discussion
Interview at A&E
Interview at home
Death scene investigation
Initial bereavement care
Post-mortem examination
Preliminary ‘cause’ of
Parents informed
Continued support
Final results of
post-mortem
Case discussion meeting
Written report
classification
Norfolk LSCB Protocol 20
Appendix I

Information to be collected by the paediatrician
at the first interview and the home visit
Introduction
The importance of the history being taken by an experienced paediatrician, with knowledge and understanding of the
care of infants and sensitivity to the needs of the family, cannot be over-emphasised.
This list is meant as a guide. It cannot be comprehensive, as additional specific questions may arise as a consequence of
information given by the parents. Encouraging the parents to talk spontaneously, with prompts about specific information,
is likely to be better than trying to collect a structured history in
the more usual way. In recording parents’ accounts of events, it is important to use their own words as far as possible. (Ideally,
information should be recorded verbatim.)
Much of the information is very sensitive. Parents may feel very vulnerable when asked about their sleeping
arrangements, alcohol intake or drug use, so great skill is needed in asking the questions in a non-threatening way, with no
implication of value judgment or criticism. Parents may ask directly if their alcohol
intake has contributed to the baby’s death; it is very important that the interviewer does not jump to conclusions about
such questions, whilst not being dishonest when asked direct questions.

The baby
-
First name and family name (plus any other names by which the baby may be known). If possible, obtain the NHS number as this may facilitate access to other records. Full name (plus any other names by which the mother may be known). Phone number (home number and mobile number) and phone number of any available close relative or friend (to facilitate making contact again). Address to which mother will be returning when she leaves the hospital, plus phone number there and the name of the person with whom mother will be staying.
Mother’s partner and/or father of baby
-
Full name (including any other names by which he may be known). Phone number (home number and mobile number) and phone number of any available close relative or friend (to facilitate making contact again). Address to which father/partner will be returning when he leaves the hospital, plus phone number there and the name of the person with whom he will be staying.
Other members of the household (present and in the recent past)
- Names.
-

Family medical history
-
A detailed account of past medical and social history of all members of immediate family and household. Particular note and detailed information (name, date of birth, place of birth) of any previous children. Also detailed information on any deaths in infancy or childhood of any offspring, siblings or other close relatives of any member of the current household (to include as much information as possible concerning date of birth, age at death, place of death, cause of death and any other known information). Norfolk LSCB Protocol 20
Social and family history
APPENDIX 1 – page 2
A detailed account of the social structure of the family and of the household, including detailed information on alcohol, tobacco and other drug use, together with information on any prescription or non-prescription medications that may have been present or in use in the household. Information on recent changes in composition of the household (e.g. who has come and who has gone, and for what reasons).
Detailed medical history of mother
-
Details of past medical and social history of the mother, including any significant past illnesses or injuries. Detailed past obstetric history, including detailed information on the pregnancy leading to the birth of the baby who has died.
Detailed medical and developmental history of the baby who has died
To include:
- Gestation
- Birth
Type of feeding (and date and reason for changing type of feeding) Growth, development and past assessments (e.g. health visitor or GP routine, well-baby checks) Medication (either prescribed or over the counter) If possible, obtain the parent-held child health record to copy (return this to the parents after copying it); plot the weight record onto a centile chart.
A detailed narrative account of the baby’s feeding, sleeping, activity and
health over the two-week period prior to the death
This should include information on:
-
Changes in individuals responsible for providing care to the baby Any social, family or health related changes in routine practices over the past two weeks Any illness, accident or other major event affecting other family members in the past two weeks.
A detailed (hour-by-hour) narrative account of events within the 48 hours
prior to the infant being found dead
A detailed description of:
-
Precisely where the baby was placed for sleep Position at the end of the sleeping periods Any changes in routine care or routine activity levels Information on the activity and location of all significant members of the household Information on alcohol intake and recreational drug use by members of the household during this period.
The final sleep
A very careful description of when and where the baby was placed to sleep,
including:
-
Who was sharing the surface on which baby was sleeping (e.g. bed or sofa) the times at which the baby awoke for feeds Norfolk LSCB Protocol 20
What were the activities of others in the room APPENDIX 1 – page 3
Where, when and by whom was the baby found What was the appearance of the baby when found What was the position of the baby when found Had the covers and the position of the covers moved Were there other objects in the cot or bed adjacent or close to the baby (e.g. teddies, dolls, pillows)
Action after baby was found
A detailed narrative account of events that followed the discovery of the baby collapsed or apparently dead, to include details
of:
-
When, how and by whom the emergency services were called Was resuscitation attempted and if so by whom Were any responses obtained from the baby How long did it take for the emergency services to arrive?
Further specific questions
In addition to the information outlined above, information should be collected on the parents’ perception of:
-
Whether the baby was feeding as well as, or less well than, usual in the past 24–8 hours Any respiratory difficulty, noisy breathing, in-drawing of the ribs, wheezing or stridor Passage of stool and urine (how often and how much) Were any healthcare professionals consulted within the past two weeks, the past 48 hours or the past 24 hours If so, who was contacted, what was the problem described to the healthcare professionals and what advice was given Was the baby seen and assessed by any healthcare professional during the past two weeks?
Whilst most of the medical and social history will be obtained during the initial discussion with the parents in the
A&E department, a very careful and detailed account of the final 24–48 hours will almost always be considerably
supplemented by information collected at the time of the initial home visit and close examination of the circumstances
of death.

The home interview and visit to the place where the baby died can be very difficult, but may also be of great value in
understanding the sequence of events leading to the death. Parents commonly find this home interview, whilst stressful and
sometimes painful, very helpful – the fact that the paediatrician is willing to spend this time with them, helping to understand
what has happened to their baby may in itself be very important to the family and many questions commonly arise out of this
visit (in particularly in relation to the factors that may have contributed to the death).
At the end of the interview, it is essential that the paediatrician spends some time with the family ensuring they know what will
happen next, when they will next be contacted by the paediatrician, when and where the post mortem will take place, and how
they will be informed of the preliminary results.
Time will also be needed for the paediatrician to help the parents deal with the very powerful emotions that are commonly
brought out by this discussion. If conducted sensitively and with awareness of the parents’ needs, this interview can have a
therapeutic ‘debriefing’ value for the family – commonly allowing them to talk about some of their feelings for the first
time. Parents have commonly reported that this home visit has been an extremely important and very positive aspect of their
care.
Norfolk LSCB Protocol 20
APPENDIX 2
Checklist of whom to inform about the death

Telephone Number
Out of Hours
Children’s Services Emergency Duty Team call – to activate SUDI professional involvement and to consider safety of other children In Working
The Coroner (usually via the Coroner’s Office) Children’s Services Emergency Duty Team Hospital Social Services Department for children (NNUH cases only) Consult the hospital’s own protocol for a list of consultant paediatricians that should be notified including the Trust Leads for Child Protection and Sudden Unexpected Deaths Midwife (if still involved) Children’s Services Department

Source: http://www.nscb.norfolk.gov.uk/documents/protocol_20.pdf