Frequently asked questions (FAQs)

“Always helpful when we have questions” Child Death Review Nurse, responding to NCMD’s survey, Oct 2020

The death of a child is a tragedy. To prevent future deaths, it is vital that all child deaths are carefully reviewed so that we can learn as much as possible from them – and that is the basis of the Child Death Review (CDR) process. However, we understand that this process – and NCMD’s role in it – may be complicated, if you are unfamiliar with the sector. Find below answers to initial questions that you may have.

Links to further information and support for families can also be found at the bottom of this page.

What is NCMD?

The National Child Mortality Database (NCMD) is a public-sector programme that gathers information on all children who die before their 18th birthday across England. We do not hold data relating to stillbirths or legal terminations of pregnancy. Our national data collection and analysis system is the first of its kind anywhere in the world to record comprehensive data on the circumstances of children’s deaths which is standardised across a whole country (England). The following links provide further information: About NCMD and a postcard about NCMD for bereaved families with summary information.

Who is responsible for NCMD?

The Healthcare Quality Improvement Partnership (HQIP) has commissioned this programme of work on behalf of NHS England. NCMD is led by the University of Bristol, in collaboration with the University of Oxford, University College London (UCL) Partners and software developers, QES. Other partners include three charities that support and represent bereaved families: Child Bereavement UK, the Lullaby Trust, and Sands.

More information can be found using the following links:

The NCMD team
Our partner organisations, and
How we are managed.

What is the aim of NCMD?

The overall purpose of collating information across the whole of England is to identify themes and learn lessons that can be shared nationally to reduce the number of children who die. More information about NCMD’s aims and the purpose of our work can be found in our first annual report, 2019.

What are the programme’s timescales?

The database has funding for four years in the first instance – from April 2018 to March 2022. In the first year, we developed the database in consultation with our key stakeholders, including bereaved families, and then data collection began on 1 April 2019. In addition to deaths occurring from 1 April 2019, we also collect information on children who died prior to that date where their death review was still ongoing on that date (further information on the Child Death Review process can be found in the question below). Further background information about the timeline of the NCMD programme can also be found here.

What is the Child Death Review (CDR) process?

The Child Death Review (CDR) process in England runs from the moment of a child’s death to the completion of a review meeting, and normally takes between 6-18 months to complete. The CDR process is outlined in detail in When a child dies (an NHS England guide for parents and carers who are bereaved) but, in summary, it refers to the formal processes that take place after every child under the age of 18 in England dies. Please note that the process may vary, depending on the circumstances, though families should be assigned a key worker to advise what is happening in relation to their child. More information about child death review for families can be found on our partner charities’ websites:

The Lullaby Trust’s leaflet for families about what happens when a child dies suddenly and unexpectedly, and
Sands online information about reviews after a baby has died.

How is the CDR process managed?

CDR partners throughout the country (local authorities or clinical commissioning groups) are responsible for delivering the CDR process, which is managed by their local Child Death Overview Panels (CDOPs) or equivalent. For further information on the statutory guidance for professionals in relation to the CDR process, you may wish to refer to the Government’s CDR Statutory and Operational Guidance and Working Together (guidance on inter-agency working) documents.

How is data collected and how will it be used?

Data is collected by local the Child Death Overview Panels (CDOPs) as part of the Child Death Review (CDR) process – see above – and then submitted to NCMD (this is a legal requirement, due to the critical nature of the work). Note that provision is made within the Children Act 2004 for the collection and processing of this data without consent. We collect personal data on the child and the circumstances of their death, and then quality assure and analyse it to understand how and why children die. For more information, see NCMD’s Data Flow Diagram.

Is the data safe and secure?

Our approach to data usage and storage is underlined by our CARE pledge to bereaved families which states that we will collect only relevant data for our core purpose, that it will be held according to strict data protection guidelines, and that published information will always be anonymised. More specifically, we store information on a secure web-based platform that has been built especially for this purpose. This platform has been rigorously tested and meets the requirements for confidential information set by NHS England (it can only be accessed by those with a unique username and password on a ‘need to know’ basis). All information is stored on this secured and encrypted database as well as secured and protected servers, and no personal or confidential information is kept on paper records. For further details about how data is stored, see NCMD’s Privacy Notice.

How can I learn more about NCMD as the work progresses?

We aim to publish a number of reports based on the data we collect (with amalgamated and anonymised data) throughout the life of the programme. More information on our current publications can be found here.

Where can I find out more information?

Throughout this section, we have provided a number of links to further information – both on this site and from a range of external organisations. Find below an overview summary (however please note that this list is not exhaustive; health professionals and charities will be able to provide further support related to specific situations, if needed):

For families:

When a child dies (a guide for parents and carers who are bereaved from NHS England)
Learning from deaths: Information for families, further information from the NHS to explain what happens after a bereavement
NCMD’s postcard for bereaved families
The Lullaby Trust’s leaflet for families about what happens when a child dies suddenly and unexpectedly . They also have a leaflet on bereavement support and their website provides further information and support regarding sudden infant death syndrome (SIDS)
Sands offers information about reviews after a baby has died. Their website also provides information and support regarding stillbirth and neonatal death
The Child Bereavement UK website has a range of support and information for families of children of all ages
The Child Death helpline offers support and advice to families whose child has died.

For professionals:

CDR guidance from NCMD
Local Child Death Overview Panels (CDOPs)
Child Death Review Statutory and Operational Guidance
Guidance on Joint Agency Response (JAR) to child deaths (revised under COVID-19)
Statutory Child Death Review (CDR) forms
Guidance on inter-agency working, Working Together.