NCMD Parent, Patient and Public Involvement Group – Joint Stakeholder Meeting

By Jenny Ward, Chief Executive, The Lullaby Trust

The latest Parent, Patient and Public Involvement (PPPI) meeting took place in London on 12 June 2019.

The PPPI meetings, when we write them down in this blog, sound like an administrative part of the NCMD, which doesn’t reflect how important they are at bringing people together. The June meeting was again really well attended by a range of professionals, researchers, charities and other organisations who work directly with bereaved families. It was a lively meeting with some excellent updates and examples of why we are all involved, and discussions on what we do next.

Dr Karen Luyt introduced the meeting, giving a description of the NCMD and the first year of development work. She explained that the database went live on 1 April 2019 and live data is now going in via the eCDOP system and directly through the NCMD portal. 2,000 child deaths from England have already been added by 73 CDOPs (Child Death Overview Panels). All CDOPs are required to notify NCMD within 48 hours of a death. Karen helpfully clarified some points made about the types of deaths being entered, saying that any birth that showed signs of life would come under the system, no matter what gestation the baby was.

Vicky Sleap spoke through a powerful case study that had been subject to the CDOP process previously. There were specific issues raised in a much wider policy area that came from this case, and one key point raised by the case is now the subject of a consultation by the Department of Education. Vicky highlighted how having the data will strengthen arguments for change where it is needed, and it is hoped that this will help policy changes to be made much faster than they currently are.

Everyone was reminded that there are 20 supplementary forms for different types of death, all of which are available on the gov.uk website. This data will all be collected in the NCMD, with annual and thematic reports being written. They are wide in range and will collect a large amount of information. Professor Peter Fleming confirmed that there was no approved release of identifiable data for research. He is therefore working on a registry for sudden and unexpected deaths to work alongside the NCMD to allow families to give consent for information to be kept for research. A national roll-out is hoped for 2020.

An interesting discussion then took place about how to ensure the NCMD is known by everyone who needs to know about it. The team have done a great job of getting out and about at various professional conferences, including the National Network of CDOPs (NNCDOP) annual conference in March and the Royal College of Paediatrics and Child Health (RCPCH) annual conference in May.

The importance of how families find out about the NCMD was the main discussion in the meeting. All agreed that families are often given a lot of information at a difficult time. The information given needs to be simple, but also include enough detail about the NCMD and how families can find out more if they would like to. NHS England produced a booklet entitled “When a child dies: A guide for parents and carers” in 2018, which mentions the database, but this is the only information currently available. Everyone agreed that a postcard would be a good introductory size, to give families information about the database’s existence in simple words, with how and where to go for more information. Discussing a database will always feel like an administrative task for families, so the difficult task of explaining that this is information that is already collected, and that it is compulsory, was handed back to the NCMD team.

Thanks again to all those who came along. For those of us involved in the project it is hugely important to have opportunities like these to step back from the daily work and describe what is happening and why it is important, but also to get input from those working directly with families. This felt like an important time to give everyone feedback and to work out how the communication with families should take place.