Child Death Reviews: Scottish Government Steering Group Report

Chapter 3 Notifications, Data and Case Management

Death Notifications to the National Resource Centre

3.1 The Scottish national child death review system should review all deaths of children/young people who are resident in Scotland. The deaths of all live born children, including sudden and unexpected deaths in infancy (SUDIs) up to the 18^th birthday, and up to the 26^th birthday of a care leaver in receipt of aftercare or continuing care should be reviewed. Other processes, e.g. criminal investigations, significant case reviews should take place prior to a child death review, with the outcomes of these processes informing the child death review process.

3.2 A death which occurs in Scotland must be registered within 8 days of the date of death by the Registrar of Births, Deaths and Marriages. The law allows a death to be registered in any registration district in Scotland. A death can be registered by any relative of the deceased, any person present when the person died, the deceased's executor or other legal representative, the occupier of the property where the person died, or if there is no such person, anyone else who knows the information to be registered. If the death has been reported to the Procurator Fiscal, registration is open-ended. There can be exceptions with the written authority of the Registrar General. Once a death is registered it is public information.

3.3 All deaths registered are examined by a district examiner. By arrangement and in accordance with legislation, National Records of Scotland (NRS)^[4] can share information about a death after the registration of the death has been recorded in its central database. This is done electronically and can be transmitted daily, on the stroke of midnight, or weekly.

3.4 There are two National Records of Scotland (NRS) IT systems which could notify the National Resource Centre of child and young people deaths. The Registrar General is the Data Owner of both systems. One system is for Civil Registrations of events, the second is the NHS Central Register (CR). NHS CR could notify the CDR national resource centre of all deaths in the 0-18 year age range. If the NHS CR system were to provide information, an application would have to be submitted to the Public Benefit and Privacy Panel for Health and Social Care. The scrutiny process is operated across Scotland by a newly formed Public Benefit and Privacy Panel for Health and Social Care.

3.5 The legislation NRS has to take into account before agreeing to share the information includes the Social Security Act 1987, and the Local Electoral Administration and Registration Services (Scotland) Act 2006. The legislation covers who NRS can share data with, what the data can be used for and facilitates straightforward data-sharing arrangements with public bodies. However this can take time to set up and can encounter difficulties if IT systems are not compatible.

3.6 Assuming that appropriate authorisations are obtained (and, if necessary, regular payments for the work involved are made), NRS could provide information about all deaths registered in Scotland, of those aged up to their 18^th birthday, or of all those aged up to their 26^th birthday. However, other mechanisms would have to be put in place, to identify the deaths in the age range of 18-25 years who were care leavers in receipt of aftercare or continuing care at the time of death, as that death would not be formally marked in the registration system's records as the death of a care leaver in receipt of care. The National Health Service Central Register (NHSCR) could identify which deaths of people aged 18-25 were deaths of care leavers. However, to do this, NHSCR would have to be kept up-to-date (by the organisations which provide the care) regarding who was in receipt of care, in order that NHSCR could "flag" such people in its database and hence be able to inform the child death National Resource Centre (NRC) when any of them died aged 18-25. Alternatively, or in addition, as the deaths of care leavers in receipt of aftercare or continuing care are notifiable by law to the Care Inspectorate, arrangements could be put in place for Local Authorities to inform the National Resource Centre of these deaths at the same time as they inform the Care Inspectorate, providing the NRC has a secure email address.

3.7 If the death of a Scottish child or young person occurs in another UK country, it would be registered in the country where death occurred and not in Scotland. Similarly, deaths occurring in Scotland of individuals who are normally resident in other UK countries will be registered in Scotland by NRS. Arrangements should be put in place for the Scottish National Resource Centre to notify the appropriate country of a death of one of its nationals in Scotland, and for the NRC to be informed of the death of a Scottish child or young person in another UK country.

3.8 Regarding the deaths abroad of Scottish children and young people, an agreement could be put in place, with the necessary protocols on information sharing etc, for the Healthcare Improvement Scotland (HIS) Death Certification Review Service (DCRS) to inform the NRC Coordinator when the deceased child or young person has been repatriated for burial or cremation in Scotland. DCRS may also be able to provide clinical background information relevant to the death. This should avoid the need for the national Coordinator to contact the Foreign and Commonwealth Office (FCO). NRC should have the ability to revise systems to address the particular circumstances for reviewing child deaths that occur outside the UK.

3.9 Therefore, the deaths of children and young people up to the age of their 18^th birthday, and for those up to their 26^th birthday in respect of a care leaver in receipt of aftercare or continuing care at the time of death could be notified to the NRC by respectively National Records of Scotland/NHS Central Register and Local Authorities/the Care Inspectorate.

Data Issues

3.10 The NRC ought to receive the notification of death as referred to above. It should then notify the Regional Office related to the child's residence. The Regional Office would then require to gather information to inform Panel discussions, which it would organise and provide secretariat. Panels would then generate summary output reports/data on each case for collation, analysis and dissemination at national level. This process is to allow for both local and national level learning.

3.11 It is recommended that a simple 3 form approach is used. This would be similar to the system used by the English CDOPs.

3.12 Form 1 would be the initial notification form used by the agencies to inform the NRC of the death. Form 1 should also be used by the NRC to inform the Regional Office of the death which would be the notification for them to proceed with seeking and gathering information relevant to the purpose and function of the review Panel.

3.13 Form 2 would be the information gathering template form. This would be sent to all relevant agencies by the Regional Office in the process of collating information for the Panel. Agencies would complete what information they can on this form and return it to the Regional Office. For example: a general practitioner might complete certain information that is requested on the form; if there has been a SUDI review then information from it could be inserted; a health visitor may complete certain information. Agencies would complete information on this form as it is known to them and would be expected to complete only the sections relevant to them. The Regional Office would collate all relevant information onto one "master" Form 2 for each death. This is the information before the Review Panel and would then be used for the Review Panel.

3.14 Form 3 would be the summary output review form. It would contain essential information on the details and conclusion of the review including the Review Panel outcome. Form 3 would be kept as a record of the review by the Regional Office and, in a partially anonymised format, be sent to the NRC for use in their function of considering, reporting, and national learning. Supplementary forms for specific types of death may be developed if required.

3.15 Sample data forms for Child Death Reviews, ie Forms 1, 2 and 3, are set out in Annex 3.

3.16 Form 3 would be the final conclusions and learning summary report prepared at the end of a Review Panel meeting. Form 3 would be retained by the Regional Office for collation of local learning as it thought appropriate and submitted to the National Resource Centre, as stated above. It will be the only information retained on cases at both local and national level. The data items included will therefore form the basis of all analysis of modifiable factors influencing child deaths, and local and national learning.

3.17 During a Child Death Review Panel meeting, the Panel will require to consider and conclude upon an evaluation of the information of the death; to identify lessons to be learnt therefrom; and to inform an understanding of all child deaths in Scotland. The Group has considered and recommends, for that process, the approach of considering 4 specific domains, ie:

• Factors intrinsic to the child;
• Factors in the child's family and social environment;
• Factors in the child's wider/physical environment; and
• Factors in relation to service provision/delivery.

3.18 Each of these 4 domain headings will require to be considered and evaluated in the review process, by determining their level of influence in the circumstances of the death. A different number is attributed to each domain pertinent to the level of influence. This is to assist with local and national learning. Annex 5 explains this analysis process. The conclusions of the Panel on these domains should be reported on Form 3 in both a numerical and, as appropriate, free text manner.

3.19 The Child Death Review Panel will also categorise the cause of death/likely cause of death, taking into account the death certificate and other information, following the categories in the Analysis Proforma (Annex 5); and categorise and identify any modifiable factors that could have led to preventable factors arising. Annex 5 is a classification list, and aid, for use by the Panel in this process. The conclusions of the Panel should be reported on Form 3.

3.20 The process recommended above is similar to the English CDOP system which was considered by the steering group. It was viewed in operation by the Chair and supporting staff. It allows for both local and national learning. Additionally it may provide for learning across the UK. Scottish local and national learning is a central aim of the process. The use of the system recommended has that as one of its primary aims.

Electronic Case Management System

3.21 The Certification of Death (Scotland) Act 2011 confers a responsibility on Healthcare Improvement Scotland (HIS) to review a proportion of Medical Certificates of Cause of Death (MCCDs) annually for quality and accuracy. The Act also places a responsibility on National Records of Scotland (NRS) to randomly select and transmit those relevant MCCDs for review to the Death Certification Review Service (DCRS).

3.22 HIS contracted NHS National Services Scotland Information Technology (NSSIT) (which develops IT systems for national projects) to develop an electronic case management system (eCMS) to support the new national Death Certification Review Service (DCRS). The DCRS is based within NHS24 premises and the eCMS was built using an existing application (SUGAR CRM) already used to support a number of other NHS24 services.

3.23 The DCRS undertakes the reviews of MCCDs in real time. The reviews must be concluded before the death registration can be completed and the funeral can take place. To minimise adverse impact on people who are bereaved it was important that the design of the supporting IT infrastructure streamlined the process of electronically transferring MCCDs selected for review from NRS to the DCRS. Significant development work has been undertaken to develop the NRS system to select MCCDs (both manually and electronically completed MCCDs) based on certain parameters, and to build an electronic interface between NRS and the eCMS.

3.24 Aspects of the work already completed by NSSIT and NRS in terms of systems development, and the range of joined up processes that have been mutually agreed and operationalised, could potentially be transferable to support the operation of a national child death review system.

3.25 NHS Central Register could also set up a database with high quality demographic information. It could identify and include those in receipt of aftercare or continuing care up to the 26^th birthday. It would not be for NHSCR however to request and collate information on the death/deceased.

Timescale

3.26 It is estimated it would take approximately 12-18 months to set up a child death review IT system, if the existing medical examination of death certificates IT system were to be adapted.

3.27 For access to the NHS Central Register, applications to the Public Benefit and Privacy Panel for Health and Social Care will normally be concluded within 30 working days of submission, not including any time elapsed whilst awaiting a response for further information. Where an application requires review by a full committee meeting, the process will take longer to conclude.

Costs

3.28 Adapting an existing NSSIT system could potentially cost in the region of £300,000 - £400,000. Creating a new system would cost considerably more. The costs of utilising the NHSCR system would be determined and negotiated once the child death review system requirements had been developed.

3.29 It is recommended that the adaptation of an existing system is most desirable, and ought to be the favoured approach.