Child Death Review Process in NHS Borders Dawn Moss Nurse Consultant Vulnerable Children & Young People

Overview Child Death Reviews across the UK Child Death Review process in the Scottish Borders A national approach to child death reviews for Scotland, your views please

Child Death Reviews across the UK England review of all child deaths is supported by an extensive national infrastructure, which includes financial support and training. In Scotland processes for wider review of child deaths are currently being considered by a working group SUDIC review process - HIS In England as well as having a statutory responsibility to undertake Serious Case Reviews, since April 2008, Local Safeguarding Children’s Boards have a duty to review all child deaths and to respond rapidly to individual unexpected deaths of all children through a rapid response team. The key purpose of reviewing all child deaths is to learn lessons and reduce the incidence of preventable child deaths in the future. England is the first country to put in place multi-agency arrangements that will provide a comprehensive understanding of the cause of all child deaths. The rapid response team is led by a paediatrician and is made up of those professionals who have been involved with the family, plus those who need to become involved with them (including bereavement support). The teams have their normal agency responsibilities when a child dies unexpectedly, but they must also: Make immediate enquiries into the death and evaluate the reason it happened Collect information about the death in accordance with a nationally agreed (and very extensive) dataset Maintain contact with the family to ensure they are kept up to date with information about the death The designated doctor ensures that all the information about the death is sent to a multi-agency Child Death Overview panel, which is a subgroup of the local Safeguarding Children Board. All deaths, both expected and unexpected are reviewed by the panel and any patterns and trends are identified. Action is taken to try and prevent similar deaths in future. It is of note that the Child Death Overview Panel’s cover large populations (e.g. between 500,000 and a million) to enable sufficient numbers of deaths to be scrutinised each year. Prior to 2007 there was no single system of notification, no agreed criteria for inclusion and no national system for reviewing child deaths. Guidance published in 2007 states that a significant case review should be undertaken when a child dies and abuse or neglect is known or suspected to be a factor in the child’s death; the child is on, or has been on, the Child Protection Register (CPR) or a sibling is or was on the CPR; the death is by suicide or accidental death; the death is by alleged murder, culpable homicide, reckless conduct, or act of violence; the child was looked after by the local authority. Catherine Calderwood, Chief Medical Officer’s and Public Health Directorate, Scottish Government provided information about audit and confidential enquiries into maternal deaths and children up to age 1 and into child health deaths and severe morbidity in children from age 1-18. The confidential enquiry and audit of severe morbidity in children is a new area work, although there was a pilot study in deaths in children in 2006. At the present there is no detail regarding what will be regarded as severe morbidity and an expert panel is meeting to discuss this. The current plan is that these will start in April 2011 although there have already been delays.

Overview of Child Deaths in the four UK Countries (RCPCH, Sept 2013) Child Death Reviews: Improving the Use of the Evidence (Jennifer Kurinczuk & Marian Knight, Epidemiology Unit, University of Oxford, Oct 2013) The four UK departments of health commissioned an epidemiological overview of deaths in children based on routinely collected vital statistics and administrative health care data To inform policy about variation between UK countries and over time in mortality rates for children, their underlying causes of death and what other conditions they die with. • To examine the usefulness of routinely collected data for evaluating child deaths. Enshrined in national legislation for the first time in England, Local Safeguarding Children Boards (LSCBs) were required to establish local Child Death Overview Panels (CDOPs) all Local Authorities in England have a statutory duty to set up a CDOP to review the deaths of all children from birth up to 18 years of age who are normally resident in their area. CDOPs are the responsibility of Local Safeguarding Children Boards The primary purpose of CDOPs is to review individual deaths, to identify modifiable causes to inform strategic planning on how “best to safeguard and promote the welfare of the children in their area” (Working Together to Safeguard Children, 2010) – that is, to learn lessons and put the lessons into practice to prevent future deaths. Findings include, challenge of sharing learning nationally, complicated process for local analysis of data, collation of data nationally,

Child Death Review process in the Scottish Borders

Scottish Borders Population children & young people: 25,441 (23%) Borders with Lothian, Dumfries & Galloway & Northumberland NHS Borders Children & Young People’s Health Network Scottish Borders Council – Integrated Children’s Services (Social Work and Education)

In the beginning… Developed in 2011 as an action of the Child Protection Committee Review Subgroup Review of all child deaths 0-18 years Support for family Review to identify avoidable factors Support for staff Information regarding the potential requirement to proceed with a Significant Case Review. The purpose for reviewing all child deaths is to establish whether there are lessons to be learnt about how better to protect children and young people and help ensure children get the help they need when they need it in the future. This process also provides information to the Child Protection Committee Review Subgroup regarding the potential requirement to proceed with a Significant Case Review.

What does it involve? Communication via Child Protection Admin Team Flow chart outlines roles, responsibilities and actions to be followed. Requesting information from professionals involved with the child and family Stillborn deaths are reviewed as a separate process at the Obstetric Clinical Risk Meeting (2-3 monthly basis) The ‘Sudden and Unexpected Death in Children’ policy clearly explains the procedures and responsibilities of staff and support for families following death

Who takes the lead role? Nurse Consultant and/or Consultant Paediatrician role for gathering info, communication, reporting to: Child Protection Lead Officer Child Protection Committee Review Subgroup NHS Borders Health Governance Group Feedback to professionals involved with family The Nurse Consultant Vulnerable Children and/or Consultant Paediatrician Child Protection Lead have responsibility for communicating with the Child Protection Lead Officer, SBC re progress and outcome of each child death review. All child deaths will be reported by health to the Child Protection Committee Review Subgroup as an anonymised summary; if issues are identified re practice and systems relevant to child protection then information will be shared to enable a multiagency practice review. If an IRD has been undertaken this information will be shared with the Review Subgroup.

Information collected Does child meet criteria for Significant Case Review? Summary of the circumstances leading to the child’s death GIRFEC assessment and plan Siblings Plan of support for family following the child’s death Good or poor practice identified; issues that require broader multi-agency discussion Do you know if any of the following are relevant to this child’s death (criteria for Significant Case Review): Abuse or neglect was known or suspected to be a factor in the child’s death Child was on the Child Protection Register or a sibling is or was on the CPR Death was by suicide Death was by alleged murder, culpable homicide, reckless conduct, or act of violence The Child was a Looked After Child Summary of the circumstances leading to the child’s death. This should include a chronology of significant events (e.g. contact with service; changes in family circumstances) in the background history, details of any important issues identified and any factors in the child or family. Plan of support for family following the child’s death Please include any identified services both required and provided; any gaps between child’s or family member’s needs and service provision; any issues in relation to service provision or uptake

How it works in practice? Case study 11-year-old girl with complex needs SUDIC Previous concerns about care Communication (or rather lack of!)

Review of information 2012: 11 reviews: 4 children with complex health needs (3 children died in hospital, one child was SUDIC; one child lived outwith Scottish Borders but accessed services from NHS Borders) 2 young people: death by suicide; one of these cases led to a Significant Case Review 4 babies who died within neonatal period (3 from tertiary hospitals 1 young person, substance misuse Case study: Child with complex health needs E.G of reporting: 11-year-old with complex health needs; attended residential school. Had chronic medical condition; died on 31/03/12 in hospital. Support provided locally by the community children’s nurse and CHAD social worker. Child 2: 2-month old baby with existing complex medical condition died on 28/04/12 in hospital. Support provided by health visitor. Child 3: 2-day old baby transferred to intensive care shortly after birth; died on 01/05/12 in hospital. Follow-up support provided by midwife and health visitor.

Pausing for thought… Reviews should be understood as a process for learning and improving service as well as a means of recognising good practice.

Learning Children brought to A&E or mortuary Support for family - range of professionals Communication when a child dies – everyone assumes everyone knows! Practical issues The ‘Sudden and Unexpected Death in Children Policy’ (SUDIC) states that children and young people should be come to A&E to ensure that support is provided to the family and also to initiate communication with professionals involved with the young person. The three SUDIC's were brought directly to the mortuary and no information was shared with clinicians from child health. Support for the family was provided in all cases by a range of professionals (e.g. GP, health visitor, midwife, community children’s nurse). Timely communication about the death of all of the children and young people has been an issue. The professional who receives information is the GP via NHS24. A process is required to ensure that there is clear and appropriate pathway of communication (e.g. ambulance, out-of-hours, GPs, other agencies). Example – communication via young people and facebook (e.g. daughter texted me at 9am, phoned BGH young person still in A&E, only just made the decision to stop resuscitation).

Learning and tweaking process Review of SUDIC policy and awareness raising across all services and agencies ‘When a Child Dies Communication Pathway’ Changes to BGH mortuary form to ensure communication with on-call consultant paediatrician Complete review of SUDIC policy and ensure communication about policy across all services and agencies; i.e. ambulance, A&E, mortuary, ward 15, police, ICS, duty social worker (Clare Ketteridge/Dawn Moss) Develop ‘When a Child Dies’ communication pathway and ensure communication about policy across all services and agencies. This will include communication with ICS and education (Dawn Moss to meet with Ann Blackie, ICS and Christine Brown, Education in August 2012). Add additional information to the BGH mortuary form to ensure that the on-call Consultant Paediatrician receives information and can progress IRD (completed by Lesley Horsburgh, July 2012).

Onwards… Due to review current process Involvement of families in review process Continue learning from each review

A Child Death Review Process for Scotland Scottish Government Short-life Child Death Review Group considering whether a national child death review process should be set up Scottish Summit on Sudden & Unexpected Death in Infants/Children, 13th Nov, Edinburgh

National Approach – 4 options Status quo Significant Case Review or SUDI process Health Improvement Scotland – Adverse Event Analysis process Pilot in Tayside re data collection Status quo Build on SCR or SUDI review process

Thoughts from the audience What type of person should lead on child death reviews within each area? What support would be needed for this role? How should information be collated? How can we share the learning from reviews?

Thank you Dawn Moss Email: dawn.moss@borders.scot.nhs.uk Tel: 01896 828247 Mob: 07717630456 Very happy to share information!