Working with families and carers to learn from deaths

Working with families and carers to develop guidance on how to engage people when a loved one’s death is under review or investigation

As part of the NHS Citizen programme, NHS England has worked with families, carers, professionals and a range of other stakeholders and developed a new guidance for NHS trusts on how to engage with families and carers whose loved one’s death is under review or being investigated.

This includes information for families and carers that will help them understand the processes involved, what to expect and where they can go for support.

The guidance was developed following a recommendation set out in the Care Quality Commission’s review ‘Learning, candour and accountability’ which was published in December 2016. The review was carried out in response to the very low numbers of investigations or reviews of deaths at Southern Health NHS Foundation Trust.

It involved working with families and carers to understand the issues they have faced when engaging with Trusts about the death of their loved ones. It found that many families have had poor experiences of investigations and were not consistently treated with respect, sensitivity and honesty. It highlighted the need to learn lessons and identify good practice.

Development of the guidance

NHS England held the next steps and guidance development day in London on 1 and 2 November 2017.

Day one included families and carers of people whose death in NHS commissioned care has been reviewed or investigated and day two involved health professionals.

The guidance for NHS trusts on working with bereaved families and carers was co-produced with families, carers and NHS trust members who attended the two-day listening event. We have also produced an information for families leaflet which is also available in multiple formats.