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National hub progress report: February 2023

The National hub aims to ensure the death of every child to age 18 and young person to age 26 when receiving continuing care or aftercare, in Scotland, is reviewed to an agreed minimum standard.


Overview Report: Year 1 of the National hub

This month we published our Overview Report: Year 1. It summarises the progress we’ve made across Scotland in the first year. The report covers 1 October 2021 to 30 September 2022. The report offers initial reflections on the progress made by NHS boards and local authorities in implementing new arrangements to review and learn from child deaths.

Alison Rennie, Consultant Paediatrician and National Hub Clinical Lead said:

“I am struck by the monumental transformation in the culture around child deaths and the review of them across Scotland, facilitated by the development of the National hub since going live in October 2021.”

The Overview Report: Year 1 provides a foundation for the National Hub’s first annual report. We will publish the annual report in autumn 2023.

Progress update meetings with board areas

We are scheduling the next round of half yearly progress update meetings. These are with child death review leads from NHS boards and local authorities. Most meetings will take place during March and April. Discussions will be based on the proforma we recently asked leads to complete and return. They’ll focus on what is going well and where further support could be helpful. Key information from each area meeting will feed into our first annual report.

Information about reviews for bereaved family members

In June 2022, we published our report ‘When a child dies: Learning from the experiences of bereaved families and carers‘.

The report highlighted the important role that clear and consistent communication. This is important when ensuring families understand the review process. And feel thoroughly supported throughout. We’ve been working CHAS, Child Bereavement UK and Sands on creating information for NHS boards and local authorities. This information is for parents, carers and other family members following the death of a child. Thank you to everyone who took time and care to review our draft information. We want it to clearly explain the review process. Especially the role of the ‘key contact’ in keeping families informed and supported.

We’re currently consulting bereaved families who have volunteered to help us refine our information. We’ll publish our findings by early summer 2023.

Information sharing agreement now available

The National hub sought approval of its proposed data sharing processes from the NHS Scotland Public Benefit and Privacy Panel for Health and Social Care (HSC-PBPP) in 2021. However, in response to requests we have produced an optional information sharing agreement. This is for any NHS boards or local authorities that want to sign and return it or hold it as part of local governance arrangements.

You can email signed agreements to his.cdrnationalhub@nhs.scot

Introducing the National Hub online reporting portal

The National hub’s online reporting portal is ready for you to enter your core review data sets. This will enable us to:

  • collect, store and interrogate consistent and accurate data sets from across Scotland,
  • analyse national data to report on, and react to, trends and patterns, and
  • improve information governance and cohesive approaches to child death reviews and data nationally.

You should securely add core review data sets following the deaths of all children and young people that meet our criteria. This is regardless of what review process has been followed. See user guides in our Community of Practice library on ‘How to access’ and ‘How to upload a notification’.