The Patient and Carer Voice

A redesign of the National Audit of Care at the End of Life (NACEL) tool commenced in 2023. Previous iterations of the audit tool had been designed by professionals and had not directly sought the views and experiences of bereaved people.

Working alongside the Patients Association, eight bereaved people were selectively recruited seeking to include a range of voices and experience. An independent consultant was sub-contracted to co-facilitate three semi-structured, online focus groups which took place during 2023. The purpose of the focus groups was to have the voice of bereaved people (speaking on behalf of their loved ones who had died and themselves) at the heart of the NACEL re-design, speaking to priorities for improvement and informing all aspects of the audit. NACEL plan to honour those who died for whom the experience related to, by featuring their names in the NACEL State of the Nation Report Appendices/website.

The NACEL team continue to engage with the focus group participants and plan to continue involving the bereaved in future.

One of the focus group participants, Hameed, kindly agreed to be interviewed about his experiences, Hameed’s video can be viewed here:

In June 2024, NACEL were announced as a commended entry in the Patient & Public Involvement category of the Clinical Audit Heroes awards, which are an integral part of Clinical Audit Awareness Week, for the work that was undertaken with the focus group participants. You can read more about this work here.

Thank you to all the participants in the bereaved persons focus groups for sharing their experiences as well as The Patients Association and independent consultant Nikki Archer for collaborating with NACEL on this project.