Written evidence from Peter Fleming, Professor of Infant Health and Developmental Physiology, University of Bristol on behalf of the Steering Committee for the Registry for Unexpected Deaths of Children in England

 

Membership of the Steering Committee (in alphabetical order)

Dr Mudher Aladnani, Consultant Forensic Pathologist,

Ian Arrow, HM Senior Coroner for Plymouth and South Devon.

Elijah Behr, Professor of Cardiology, St Georges, University of London,

Peter Blair, Professor of Epidemiology and Statistics, University of Bristol,

Marta Cohen, Professor of Perinatal and Paediatric Pathology, University of Sheffield,

Steve Cox, Chief Executive, C-R-Y UK

Dr John Fox, Senior Lecturer, University of Portsmouth,

Dr Joanna Garstang, Consultant Paediatrician, Birmingham Children’s Hospital,

Leighton Harding, Detective Chief Inspector, West Mercia Police,

Dr Jenny Ingram, Senior Research Fellow, University of Bristol,

Dr Steven Jones, Consultant Physician,

Dr Sacha Kolar, Consultant Forensic Pathologist,

Dr Karen Luyt, Reader in Neonatal Medicine, University of Bristol,

Dr Matthew Lyall, Consultant Forensic Pathologist,

Dr Emma Matthews, Consultant Senior Lecturer in Neurology, St Georges, University of London,

Dr Anna Pease, Senior Research Associate, University of Bristol,

Neil Sebire, Professor of Paediatric Pathology, University College, London,

Mary Sheppard, Professor of Cardiac Pathology, St Georges, University of London,

Sanjay Sissodiya, Professor of Neurology, University College London,

Dr Nikki Speed, Chief Executive, SUDC, UK,

Jenny Ward, Chief Executive, The Lullaby Trust

 

Under the Statutory Guidance to the Children Act 2004, all unexpected deaths of children aged less than 18 years must be subject to a Joint Agency Response1,2, which operates in parallel to the Coronial investigation.

 

There are currently several communication issues nationally surrounding the Joint Agency Response (JAR) to unexpected child deaths which are leading to potential difficulties between bereaved families, coroners, and healthcare professionals.

 

These issues often increase the distress of bereaved families and potentially hamper effective joint working between the agencies involved.  Our multidisciplinary steering committee is anxious to improve the effectiveness of joint agency working and to avoid adding to the stress of bereaved families.

 

We work closely with the representatives of bereaved families, including the Lullaby Trust, and Sudden Unexplained Death in Childhood (SUDC.UK). Many of the comments in this letter have come from bereaved families who have contacted us directly or via these organisations.

 

We have set out below a summary of the issues and would be grateful if the Parliamentary Committee could consider these in your review of how to improve the Coroners service nationally.

 

We are keen to identify ways in which we can meet all the requirements of the law whilst improving the care provided to bereaved families. Whilst the service offered in some coroners’ domains are exemplary and oriented to the needs of bereaved families, significant variations occur, with practices that are distressing to or inconsiderate of bereaved families.

 

  1. Some bereaved families have informed us that they felt rushed into making decisions about retention of postmortem tissue samples. The Human Tissue Authority (under the terms of the Human Tissue Act 2004), requires that tissue samples taken at post-mortem examinations authorised by Coroners are destroyed within 12 weeks of the conclusion of Coroners’ enquiries unless families have given consent for their retention.  Consent must be given by families for the pathologist to retain of any such tissues for purposes of the medical record, for research focused on discovering unresolved medical issues and new diagnostic techniques, for teaching, or other lawful purposes specified by the Human Tissue Act.  

 

In many parts of England and Wales, Coroners’ Officers telephone parents, commonly within days of the child’s death, to ask parents about tissue retention. Several sets of parents have told us that they did not understand what they were being asked to give consent about, and had no understanding at that time of the huge potential importance to them as well as to wider society of tissue samples being retained.  It does not seem appropriate or fair to ask Coroners’ Officers to take this level of responsibility without a detailed understanding of the potential importance of these samples for each family (which may be different depending on the cause of the child’s death). Ideally, this consent should, whenever possible, be taken by a healthcare professional who understands the often complex nature of the child’s condition, and who is trained to explain the process and implications, without pressure on parents to decide quickly.  It would then be the responsibility of the Coroners’ staff after the end of the Coroners’ proceedings to confirm with families that they had been given this information and had made an informed decision. 

 

In other areas of medicine, the law is quite clear that in the process of seeking consent, unless appropriately detailed information has been given, and answers to questions have been given fully and accurately, the consent obtained (or the lack of consent) has no validity.

The current process in many areas is thus in conflict with recognised and accepted processes for obtaining informed consent.

 

Our proposal:

After unexpected child deaths, providing families with information on the potential significance and value of retaining tissue samples after the conclusion of the Coronial investigation, and obtaining informed consent  for such retention should be made the responsibility of the lead health professional involved in the Joint Agency Review process.

 

  1. The deaths of children often involve complex medical issues, Pathologists will commonly wish to discuss clinical aspects of a case with paediatricians either from the JAR team (for example the paediatrician responsible for investigating unexpected child deaths) or the clinicians treating the child in life in order to make a correct interpretation of the pathology findings. Such discussions enable the pathological findings to be interpreted in the light of clinical information that may only be obtained from the clinical team involved and will lead to more accurate pathological conclusions. In some Coroners’ jurisdictions these discussions are not permitted.

 

Our proposal:

Discussion between the clinical team involved in the care of a child who has died and the pathologist conducting the postmortem examination should only be prevented where there is a clear and justified instruction from the Coroner that this should not take place (for example when the death may have been a result of clinical negligence).

 

  1. The JAR concludes with a multi-professional Child Death Review (CDR) Meeting (final case discussion), mandated under the Statutory Guidance to the Children Act, where all the information pertinent to the death is considered (including the full post-mortem report); the Guidance stipulates that this meeting should take place prior to the Inquest (or paper based conclusion by the Coroner) so that the CDR Report can be shared with Coroners and inform the content and conduct of the Inquest and the conclusions. This will not only support the Coroner’s “fact finding” with the medical complexities, but also facilitates the identification of potentially important information that only becomes apparent when the relevant professionals from all agencies are able to discuss all aspects of the case.   The Guidance indicates that, generally, parents should be offered feedback from this meeting by a healthcare professional prior to the Inquest, though when criminal proceedings are under consideration the nature and content of any disclosure to parents must be carefully controlled.  In such cases, good communication between the investigating Police officers and health professionals is important and all involved must understand that in such instances there may be a need for limitation of information sharing with families. This process can only work with good co-ordination between Coroners and JAR professionals (including the police) and the staff acting on behalf of the Child Death Overview Panel (CDOP). For this process to work as anticipated in the Statutory Guidance it is important that whenever possible the full postmortem report should be released promptly to the health care professionals  prior to Inquest, with sufficient time allowed for the Child Death Review Meeting to be organised and held. Currently, whilst a blanket agreement to release postmortem reports to the paediatrician responsible for investigating unexpected child deaths and to the CDOP is in place in some Coroners’ jurisdictions,  we are aware that in some areas the lack of release of postmortem findings ahead of the Inquest means that Child Death Review Meetings are only held after Inquest; we have been informed that, despite the statutory role of the CDOP making it a “properly interested” party,  some Coroners have required written parental consent prior to release of a post-mortem report to the CDOP.

 

Our Proposal:

Whenever possible the full postmortem report should be released promptly to the lead health care professional prior to Inquest, with sufficient time allowed for the Child Death Review Meeting to be organised and held.

 

  1. In our recent national research study, we found that several sets of bereaved parents reported having been sent by mail a copy of their child’s post-mortem report without warning. This is bad practice and caused the families significant distress. A postmortem report is a complex and highly technical document that even well-educated and highly articulate families need to have carefully explained to them. 

 

This practice is still occurring as some families bereaved within the past few months have reported having had this stressful experience.

 

Our proposal:

The postmortem report should be released to the lead health professional at the earliest opportunity; this professional should have responsibility for sharing and explaining the postmortem results to the family, and providing a copy of the report to them if they wish to have it.

 

  1. Some bereaved families in our recent national study reported having been telephoned by a Coroner’s Officer and told the conclusion of the post-mortem; parents are rarely prepared for these calls, and Coroners Officers generally do not have the medical knowledge to be able to explain what the findings mean or to answer the many questions that families may have.  Families have informed us that such telephone calls are extremely distressing, and families may then resort to internet searches for information to help them understand what they have been told. JAR professionals are commonly unaware that this information has been shared with families so are unable to support them. Ideally, parents should be kept informed of the preliminary postmortem findings by their key healthcare professional, and the full postmortem  findings should be explained and discussed with parents by a  well-informed healthcare professional at the earliest opportunity after the Child Death Review Meeting.

 

Our proposal (as for section 4 above):

The postmortem report should be released to the lead health professional at the earliest opportunity; this professional should have responsibility for sharing and explaining the postmortem results to the family, and providing a copy of the report to them if they wish to have it.

 

We are keen to work with Coroners and their staff to identify how best to improve the care we collectively offer to bereaved families and hope these comments can be taken as constructive contributions to this end. 

September 2020

 

References:

  1.                https://www.rcpath.org/discover-pathology/news/new-guidelines-for-the-investigation-of-sudden-unexpected-death-in-infancy-launched.html
  2.                https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/722307/Working_Together_to_Safeguard_Children_Statutory_framework.pdf