Date lodged: 30 January 2019
To ask the Scottish Government, further to the answer to question S5W-16693 by Shona Robison on 29 May 2018, whether it will provide an update regarding the VOICES survey to capture end of life experiences of family members and carers who have been bereaved.
Answered by: Jeane Freeman 20 February 2019
The NHS Lothian project team has recently reported that they have completed the significant preparatory work required to take forward this project.
The project team have chosen not to proceed as initially planned, for a number of reasons. These include the introduction of the General Data Protection Regulation which has increased costs significantly, the large sample size required to make the findings useful for service improvement, the need to put in place support arrangements for those contacted, and most significantly the ethical requirement for the benefit of those findings to outweigh the distress caused by surveying the recently deceased.
Officials have asked the project team to take forward additional work to provide options on how best to establish a more coherent picture of the quality of end of life care, including the views of the bereaved, which can also be used for improving service delivery.