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 is working with families, carers, professionals and a range of other stakeholders to develop 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 will include 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 is being 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.

Have your say on the development of the guidance

NHS England is holding a ‘next steps’ day in London on Wednesday 1 November 2017. This will be for families and carers of people whose death in NHS commissioned care has been reviewed or investigated.

We want to work together with families and carers to co-produce good practice guidance that Trusts must use to improve the way they engage with families and carers in these upsetting circumstances. This will ensure that consistent standards are met in Trusts and that all families experience the same level of communication and involvement in reviews/investigations across England. We intend to publish the guidance in January 2018.

As we have limited places, we’re asking families and carers who’d like to be involved in the ‘next steps’ day to complete an expression of interest form by Friday 29 September 2017. If you’d like a paper or email version of the form, please email There are limited numbers of places available at the workshop, so please fill the expression of interest form at the earliest. We will confirm allocated places with those who have expressed an interest by 6 October 2017.

We know it’s important to include as many families as possible, and we want to make sure that we engage a variety of families and carers with a range of views and experiences.

In addition to the workshop, we will also be offering a live webcast, so families, carers and stakeholders have the option to choose how they would prefer to participate on the day.

The live session will include an online discussion forum and the opportunity to ask questions to workshop speakers. Details of how to take part will be made available closer to the date. Please email for information about how to access the webcast and discussion forum.

The day will include lunch and refreshments. Counselling support from the bereavement charity, Respond will be available should anyone require support throughout the day. Participants’ travel expenses will be paid in line with the NHS England expenses policy.