Listening to VOICES: Commissioning excellent end of life care – Why local data matters

by Caroline Weston Policy and Public Affairs Manager  Caroline Weston, Policy and Public Affairs Manager

A key challenge for commissioners in England is to plan services which reflect local demographic and condition profiles.
Access to better data is central to achieving this ambition. As the Difficult Conversations report argues, end of life care should be built around what terminally ill people, their families and carers want and need. Luckily for commissioners, this is pretty much in-line with what the health and social care system currently needs –  fewer people ending up in hospital when they have no clinical need to be there and more effective community-based interventions for people at the end of life. Last year Marie Curie published the Death and Dying report which underlined the variation in experiences and outcomes for dying people in different areas of England. This report draws on key publicly available data, including what is now known as the National Bereavement Survey (VOICES). VOICES, which is commissioned by NHS England and delivered by the Office for National Statistics (ONS), is crucial to understanding end of life care in England. Better data can enable commissioners and others to identify where improvements are needed to ensure equality of access to services, and more responsive services, across geographical areas and across different patient characteristics.

Using data to improve end of life care

VOICES data enhances what we already know about end of life care, including where people die and how this varies by age, gender, cause of death and level of deprivation. However VOICES gives us a clearer understanding of the experience of people at the end of life, by drawing on the experiences and perceptions of over 22,000 bereaved relatives each year. Having previously published VOICES data at a PCT cluster level, ONS has recently combined the 2011 and 2012 waves of VOICES survey data and reconfigured the data so it is available at both Local Area Team and Clinical Commissioning Group level. It is extremely positive that we now have data available which is both based on the views of families with direct experience of end of life care and available at CCG level, so that commissioners can base local service planning on local data and experiences and learn from high-performing areas. The difference this makes is profound. Analyses of the previous waves of VOICES data (at PCT cluster level), enabled us to explore differences across broad geographical areas. This showed that the experiences of terminally ill people in London are worse than the rest of England. The original VOICES analysis looked the PCT cluster data and benchmarked them according to 11 key items in the survey. PCTs were then categorised as red (lowest 20% of responses), green (highest 20% of responses) and amber (remaining 60%).  London was categorised as follows (ONS, VOICES July 2012 findings, excerpt from Table 29, appendix A): blogimage1   NB. Ratings for Inner North East London were not available due to the low number of respondents When viewed at this level, end of life care experiences appear to be average to poor across all of London.  However, looking at the latest CCG level VOICES data demonstrates stark differences within London.  Most obviously, Westminster and Islington CCGs both buck the citywide trend with overall experience of the quality of care in both locations placing them in the top fifth of all CCGs. Marie Curie Atlas To help commissioners determine what the VOICES CCG level data means for their areas, Marie Curie has created a mini-Atlas containing the new CCG level data.  This is in addition to the original Marie Curie End of Life Care Atlas which was first developed and published by Marie Curie in October 2012 and brought together the original VOICES (PCT cluster level) data and a broad range of data on end of life care across the UK at a PCT level in England.  As more data is published at CCG and Local Area Team levels, we will fully refresh the original Marie Curie End of Life Care Atlas to enable commissioners to map end of life care services and experiences in their areas. VOICES CCG level data is a great resource for commissioners which can help them explore the perceptions of bereaved relatives in their area and ensure that end of life care locally is firmly rooted in what terminally ill people and their families want, and what the health and social care system needs.