Information for Families

One of the things you want most when your child dies is learning so that another parent doesn’t go through the same devastating experience,” bereaved mother

We aim to save and improve children’s lives in the future by learning from the past. In order to achieve this, we collate and analyse data on all child deaths in England. We are publicly-funded (NHS England) and run by the University of Bristol and, as such, adhere to high ethical and data security standards – see below for more information on data collection and storage.

When asked, bereaved parents unanimously supported a national database of child deaths*

Why is NCMD important?

The NCMD national data collection and analysis system is the first of its kind anywhere in the world to record comprehensive data, standardised across the country, on the circumstances of children’s deaths. Before NCMD, data was held locally. Now, with data shared across England, there is potential to identify trends and introduce changes that could improve or save the lives of more children than before.

This section explains more about our work and sets out our commitment to bereaved families. For further information about the wider support you can expect to receive after your child has died, see When A Child Dies (a guide put together by bereaved parents and support organisations to help bereaved families) and the NHS document Learning from deaths: Information for families

See also NCMD’s Frequently Asked Questions.

 

Our CARE pledge to bereaved families

Families are central to our work. As such, we are committed to demonstrating compassion and integrity in everything we do, as underlined by our CARE pledge to bereaved families:

  • Core – Your data will be used solely for our core purpose of learning lessons to improve and save lives.
  • Anonymous – We will never publish information where you or your child can be identified.
  • Relevant – We will only collect relevant data, including personal information about your child and their death.
  • E-safety – All data is held according to strict data protection guidelines and, as such, is safe and secure.

More information on our postcard to update bereaved families on our work.

The Child Death Review (CDR) process

The overall purpose of the child death review process is to understand how and why children die, to put in place interventions to protect other children and to prevent future deaths. The Government’s guidance on safeguarding children, Working Together, outlines two related processes for when a child dies:
  • A ‘Rapid Response’ where a group of professionals come together for the purpose of evaluating the cause of death in an individual child, where the death of that child is unexpected, and
  • A ‘Child Death Overview Panel’ (CDOP) that comes together to undertake an overview of all child deaths under the age of 18 years.

It is intended that these processes will:

  • Document and accurately establish cause of death in each individual child
  • Identify patterns of death in a community so that preventable factors can be recognised and reduced
  • Contribute to improved multi-professional collection of medical, social and forensic evidence where relevant
  • Ensure appropriate family and bereavement support is in place, and
  • Identify learning points for service provision, which relate to care of children.

For more information about the Child Death Review process, see the Government’s Child Death Review statutory guidance.

Your data

Your child’s information is included in NCMD automatically (it is a legal requirement). However, for further information about how your data is stored and your rights, go to the Data Security section.

More information

  • When A Child Dies leaflet
  • Information from the NHS, Learning From Death
  • The Lullaby Trust’s leaflet for families about the CDR process contains a useful glossary of terms and a list of organisations to contact for bereavement support as well as information about the Child Death Review (CDR) process. Their website also provides information about sudden infant death syndrome (SIDS)
  • SUDC UK explain the process of tissue sample collection, and provide advice to parents on making decisions, in this video. Their website also provides information and support for those dealing with sudden unexplained death in childhood.
  • 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
  • NCMD’s FAQs

More information and support from a range of organisations, can also be found here.

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