National Survey of Bereaved People, 2011-2012

Abstract copyright UK Data Service and data collection copyright owner.The National Survey of Bereaved People (VOICES - Views of Informal Carers - Evaluation of Services) is an annual survey designed to measure the quality of end of life care. The VOICES survey particularly focuses on the last three months of life. Results are used to inform policy decisions and enable evaluation of the quality of end of life care by age group, sex, in different settings (home, hospital, care homes and hospices) and by different causes of death. Quality of end of life care is also included as an indicator in the NHS Outcomes Framework and the VOICES survey is used to monitor progress against this. The Department of Health (DH) first commissioned the survey in 2011 to follow up on a commitment made in the End of Life Care Strategy. Previously, very little systematic information was available about the quality of care delivered to people approaching the end of life, despite reports from the Healthcare Commission and the Neuberger review highlighting deficiencies in care. The commissioning responsibility for the survey moved from DH to NHS England following the restructuring of the Health and Care systems in England in April 2013. Each year a sample of approximately 49,000 adults who died in England is selected from the deaths registration database held by the Office for National Statistics (ONS). To ensure the sample represents the deaths in England for the given period and covers the key domains of interest, the sample is stratified according to the cause of death, place of death and geography. For the 2011 and 2012 surveys, geography was based on Primary Care Trust (PCT) clusters. For the 2013 survey onwards, this is based on NHS Area Teams (NHS Area Team 2013 has also been applied to the earlier datasets). The VOICES questionnaire is sent by post to the person who registered the death of the deceased; this is usually a relative or friend of the deceased. Questionnaires are sent out between 4 and 11 months after the patient has died. As is standard in most postal surveys, if no response is received, this first questionnaire is then followed up with two reminders. Once fieldwork, data capture, cleaning and processing are complete, findings are disseminated at both the national and sub-national level. Further information about the survey and links to related publications may be found on the ONS National Bereavement Survey (VOICES) QMI webpage. End User Licence and Secure Access versions available The UK Data Service holds standard End User Licence (EUL) and Secure Access versions of the National Survey of Bereaved People data. EUL data are available to registered users but Secure Access data are only available to ONS Accredited Researchers (in addition, project approval and successful completion of a stringent training course are required before access can be granted). The Secure Access version contains finer detail variables (e.g. IMD deciles as opposed to quintiles in the EUL data, Strategic Clinical Network in addition to NHS Area Teams, and more detailed information on age, causes, dates and place of death). Users are strongly advised to check whether the EUL data are sufficient for their research needs before making an application for the Secure Access version. Main Topics:Date, cause and place of death; quality and standards of medical, nursing, social and pastoral care in the last three months of life; support for relatives/carers; demographics of deceased person and respondent