Vicky Sleap, NCMD Project Manager, reflects on the importance of CDR data under COVID-19:
The emergence of COVID-19 and its classification by the World Health Organisation as a pandemic on 11th March 2020 is one of the biggest global challenges faced in our lifetime. The speed with which the virus has spread, and the impact of the lockdown measures on the everyday lives of people all over the world is unprecedented.
Watching the daily government briefings as the scale of this challenge emerged was frightening, particularly in the early days when so much was unknown. I can scarcely believe that as little as three months ago I was taking a bus to my local coffee shop and meeting with my friends with no thoughts of face-masks, hand sanitiser or restrictions to our movements and certainly no worries about contracting a serious illness. The different world we now find ourselves in makes all of us question our priorities and ask what we can do to help. Whether that be standing on our doorsteps on a Thursday evening to cheer and clap for our key workers who have shown supreme courage every day in stepping out of their front doors and continuing to serve their communities, or by staying at home to slow the spread of the virus or by doing shopping for an elderly neighbour who is shielding.
For me, the answer to that question was quick to surface. Working as part of NCMD, our team had a unique opportunity to adapt our existing data collection system to help those in senior positions in the healthcare service and in government to understand the impact of the virus on children and child mortality. We knew that the statutory requirement to notify NCMD of deaths of children within 48 hours meant that we could quickly identify and escalate any issues relating to children to enable national decision-makers with responsibility for children’s well-being to respond rapidly and decisively. We also knew that our community of child death review professionals and CDOPs had an opportunity to make a real difference to the lives of the children and their families, and to ensure that any impact of this virus on them was visible.
I titled this blog “What a difference a day makes” because every day since we made that decision has felt like a week (I don’t mean that in a negative way!) – both in terms of the speed at which things have happened and the changing nature of the world at large and, therefore, the context in which the virus is happening. The support and responsiveness of CDOPs and CDR professionals has utterly blown me away during this time. People have responded to our requests with speed and a genuine desire to help, and they have done so at a time when their own worlds were turning upside down as they transitioned to working from home, and for many, becoming school-teachers and trying to juggle work and childcare commitments. I have never felt more proud to be a part of their community. We in the CDOP world have always known the value of our work and now the world can see it too.
The real-time surveillance system that we have set up here at NCMD is the first of its kind in the world. It has allowed us to provide data on all deaths of children (both in hospital and in the community), to identify changes in access to services and the impact that has had on children and their families, and to help the government and other agencies adapt their services as we have progressed through this pandemic. As you might imagine, this takes a significant and sustained effort from everyone involved in the process from the professionals who complete the notification form, through to the CDOPs who submit that data to NCMD and respond to our requests for additional information, the IT professionals who keep all our electronic systems working, our data analyst and other members of the NCMD team who clean, check, extract, anonymise and analyse the data for our daily and weekly report to NHS England, our team of clinicians who review and code every single death every day so we can spot any signals or emerging themes and provide interpretation of what the data shows, our colleagues in Public Health England who check the COVID-19 test results to ensure we know about every case of the virus, our colleagues in NHS England who review the data every day and ensure the relevant messages are passed up to colleagues in government, and finally our communications professionals who help us understand what messages we need to get out to the world and how.
All these people are working together to try and understand and minimise the effect of the virus on children and, as with many people these days, much of what they do is unseen and uncelebrated, but they continue nonetheless because who knows what a difference we could make in the next 24 little hours?
Find out more: Details of NCMD’s work in relation to COVID-19 can be found here.