The NCMD acknowledges with thanks the hard work of Child Death Overview Panels around the country, and of the staff who make up our team, in the last year. Without their efforts, none of the achievements detailed in this report would have been possible.

This report explores the impact of the National Child Mortality Database (NCMD) programme in 2023.

2023 was an exceptional year for the NCMD. Now in our third year of sharing findings and analysis, we ramped up our engagement in the policy space and ensured our findings were heard in Parliament. We published a range of new materials sharing these findings through the year, including two thematic reports (on traumatic injuries and infections), four academic papers, a data release and a report in partnership.

Our experts spoke at a range of events across the UK and beyond, sharing our data with professionals groups including GPs, paediatricians and the child death review community. We also invited colleagues to our own training sessions and webinars, and for the first time delivered a series of in-person training sessions for CDR professionals.

We also influenced policy and the public discourse, contributing to the work of three all-party parliamentary groups and prompting Parliament’s first ever debate on sudden and unexplained deaths in childhood.

The NCMD acknowledges with thanks the hard work of Child Death Overview Panels around the country, and of the staff who make up our team, in the last year. Without their efforts, none of the achievements detailed in this report would have been possible.

This report explores the impact of the National Child Mortality Database (NCMD) programme in 2022.

2022 was an exciting year for the NCMD. Now in our second year of sharing findings and analysis, we were once again able to travel to meetings and conferences to share our learning. We published a range of new materials sharing these findings through the year, including two thematic reports (on newborn health and sudden, unexplained deaths), three academic papers, a data release and a case study to share some of our ways of working.

Our experts spoke at a range of events across the UK and beyond, sharing our data with professionals groups including GPs, paediatricians and the child death review community. We also invited colleagues to our own training sessions and webinars, where we hosted more than 2,500 professionals through the year.

We also influenced policy and the public discourse, contributing to the work of two all-party parliamentary groups (on baby loss and temporary accommodation) and working with the media to share the issues that matter for child health with over 1.5m people.

The NCMD acknowledges with thanks the hard work of Child Death Overview Panels around the country, and of the staff who make up our team, in the last year. Without their efforts, none of the achievements detailed in this report would have been possible.

This report explores the impact of the National Child Mortality Database (NCMD) programme in 2021.

2021 was a special year for the NCMD. Though the programme began in 2018, 2021 was the first year that we had sufficient data to begin sharing learning to fulfil our purpose: to improve and save children’s lives. We published our analysis of the data that we collect in five academic papers, two data releases, two thematic reports (on the impact of social deprivation and suicide on child mortality) and a briefing during the year.

Collectively, those publications were seen by 32,000 people on our website – and as many as 27.5m people saw our findings shared in the press and other websites, from academic publishers Nature and BMJ to media outlets like The Guardian and Newsnight.

Our findings were used by the NHS and the Joint Committee on Vaccination and Immunisation (JCVI), among others, to inform policy decisions on the most pressing issues causing deaths among children and young people. Our findings on Covid-19 and its impacts on children and young people, derived from real-time data on deaths among children testing positive for the virus, were particularly important as the pandemic continued to develop.

At the same time, our webinars supported the practice of more than 750 child death review professionals through the year, and we answered more than 400 queries directly, in order to ensure that the child death review process is efficient, informative, and sensitive to the needs of bereaved families.

The NCMD acknowledges with thanks the hard work of Child Death Overview Panels around the country, and of the staff who make up our team, in the last year. Without their efforts, none of the achievements detailed in this report would have been possible.

How did we do? NCMD’s achievements for January to June 2021

We are proud to share a summary of the impact that we have had during the period from January to June 2021, in the form of our latest bi-annual impact report. The achievements outlined in this report are the result of work undertaken by the whole CDR community – without whom none of this would be possible, particularly at this very difficult time.

Whether influencing national strategy, supporting the Child Death Review (CDR) community, improving CDR process, or engaging with our target audiences and the public, find below some highlights:

• Publication of first thematic report Child Mortality and Social Deprivation in May 2021, identifying priority areas to reduce health inequality for children across England. With foreword by Professor Sir Michael Marmot and photographs courtesy of a national exhibition. Received unprecedented sector interest including coverage in the Guardian and Independent, and peak daily website users of 2,242 (increase of over 350%). Also the subject of a briefing with the Office for the Children’s Commissioner.

“An excellent and moving report” bereavement charity partner (on the Child Mortality & Social Deprivation Report) 

• NCMD webinar featuring Professor Simon Kenny, NHS England, held to demonstrate impact of CDR data, Jan 2021.
• 2020/21 CDR data successfully collected by 31 March 2021. Every CDOP submitted at least one death notification; and the median time between
  date of death and the date the case was submitted to NCMD was 2 days. Also, 57 out of 58 CDOPs finalised at least one case in this period.
• Invited to deliver two sessions at the 2021 RCPCH conference, aimed at sharing best practice with the paediatric community: Plenary on the deprivation report; and an e-poster on Child Mortality in the COVID-19 pandemic.
• Website use increased – 25,362 page views from Jan-May 2021 (10,944 for the same period in 2020; increase of over 200%).
• Social media engagement increased – Twitter followers increased to 700, May 2021 (291 in May 2020). Over 100,000 tweet impressions, May 2021 (26,900 in same period 2020 – increase of 300%).

To see NCMD’s impact report for January to June 2020, use the link below:

How did we do? NCMD’s achievements for July-December 2020

We are proud to share a summary of the impact that we have had during the period from July to December 2020, in the form of our latest bi-annual impact report. The achievements outlined in this report are the result of work undertaken by the whole CDR community – without whom none of this would be possible, particularly at this very difficult time.

“It is so rewarding to see the work we are doing in our local areas brought together…it will influence and improve outcomes for child health at a national level” 

Whether influencing national strategy, supporting the Child Death Review (CDR) community, improving CDR process, or engaging with our target audiences and the public, find below some highlights:

• Publication of the Child Suicide Rates during the COVID-19 Pandemic in England: Real-time Surveillance briefing in July 2020 – with 11,207 webpage views in first three months and resultant coverage in the national media (Independent and Guardian). This briefing was subsequently quoted in a letter from the primary care sector to Matt Hancock which was featured in the media, including Pulse and GP Online in October 2020.
• NCMD was invited to give a presentation to the All-Party Parliamentary Group (APPG) on Baby Loss, focusing on inequalities for BAME families in September 2020.
• Increased engagement from the sector, with 91% of CDOPs having created a case in NCMD in September 2020. The median number of days between death and NCMD notification at was reduced to two days for Jul-Sep 2020 (it was 4 days for the same period in 2019). 
• 1500 NCMD postcards for bereaved families were distributed to CDOPs, following relaxation of the first COVID lockdown.
• Use of NCMD’s website saw an enormous increase – with 29,996 page views from Apr-Sept 2020, compared with 2,950 page views for the same period in 2019 (an increase of over 900%).

To see NCMD’s impact report for July to December 2020, use the link below: 

How did we do? NCMD’s achievements for Jan-June 2020

Learning from the past to change and improve the future is the very reason that NCMD exists; and we thank the entire CDR community for enabling us to do just that. We are proud to share a summary of the impact that we have had during the period from January to June 2020, in the form of our latest bi-annual impact report.

“Thank you; that’s very clear and concise, and just what I needed to know,” Denise Dawson, Rochdale Borough Council (in relation to advice from NCMD)

Whether influencing national strategy, supporting the Child Death Review (CDR) community, improving CDR process, or engaging with our target audiences and the public, find below some highlights:

• Real-time CDR data was used to inform national strategy on COVID-19, resulting in changes to NHS systems and messaging during the pandemic.
• An expert panel on suicide was established to review data under COVID-19, resulting in a briefing about child suicide in England during lockdown.
• Over 6,000 cases were submitted to NCMD up to 31 March 2020, with 800 new cases created and 600 finalised in March 2020 alone. 
• A data sharing agreement was established with the neonatal clinical system BadgerNet (used by all neonatal units in the country), to enhance the completeness of notification information for neonatal deaths.
• Engagement with the CDR community went from strength to strength, with over 110 participants attending our webinars in March and June 2020, and newsletter subscribers more than doubling between September 2019 and June 2020.

To see NCMD’s impact report for the period January to June 2020, use the link below: 

NCMD publishes first annual report

The National Child Mortality Database (NCMD) Programme has today published its first annual report.

The NCMD programme collates and analyses information collected from Child Death Overview Panel (CDOP) reviews of all live-born children in England, who die before their 18th birthday.

The purpose of collecting and analysing this information nationally is to ensure that deaths are learned from, that learning is widely shared and that actions are taken, locally and nationally, to reduce the number of children who die.

The NCMD first annual report describes the background for the development of the national data collection system and the progress made in the first year of the programme. It is intended to be of general interest to professionals, bereaved parents and the public.

Key Achievements

The report sets out the key achievements during the first year of the NCMD programme. These include:

• Governance and operational structures were developed ensuring bereaved families and professionals who care for children are fully represented at the very core of this programme.
• A communications plan was developed, which focused on effective engagement through the NCMD website, social media and presentations at national events, such as, NHS England implementation events and webinars, the National Network of Child Death Overview Panels (NNCDOP) Annual Conference and the Annual Conference of the Royal College of Paediatrics and Child Health. This has involved raising awareness about NCMD to CDR partners and specialist professional organisations.
• A legal basis for collecting and holding data in NCMD was established.
• A set of supplementary reporting form questions was updated and expanded to collect information from those people who provided services to the child and their family during life and after death.
• The NCMD web-based platform was designed and built. A pilot was carried out to test the system, which resulted in the provision of valuable feedback from CDOPs that enabled appropriate adjustments to be made before going live. The team worked with members of the NCMD Steering Group, Parent, Patient and Public Involvement Group, Professional Advisory Group and CDOPs to ensure that when the system was launched it met the needs of all stakeholders.
• Data linkage collaboration was set up with the Perinatal Mortality Review Tool (PMRT), with the aim to support professionals by reducing the number of forms they need to complete to provide information for both data collection systems. Progress was made in mapping both national data sets and setting up the principles and plans for the technical work required.
• An NCMD pilot phase was completed where CDOPs tested NCMD by entering information into the system and providing feedback on what works and what needed changing.
  After the successful completion of the pilot, the NCMD system started data collection on 1st April 2019, as planned.

NCMD focus since the start of the national data collection on 1 April 2019

A set of milestones, which focus on driving improvements in the collection, completeness and quality of the information feeding into NCMD were achieved during the first 6-months since the national data collection began. These include:

• A Quality Improvement plan was developed with a focus, in the first year of data collection, to drive improvements in data completeness and quality along with initiatives to support CDOP offices in collecting the information and recording it correctly on the online systems.
• Quality Improvement webinars are being organised, open to all CDOPs, as a mechanisms for direct support from the NCMD team and to receive feedback from CDOPs on their experiences using the database and the new data collection fields.
• Regular bulletins and newsletters are published on the NCMD website detailing programme progress and providing guidance to CDR professionals on database development, updated data fields and quality improvement requirements and recommendations.
• Individual regular updates on data quality indicators will also be sent to CDOPs via secure email.

Dr Karen Luyt, the NCMD Programme Lead, said: