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The University of Southampton
Health Sciences

World first: driving up standards for end-of-life care

Despite major service developments in the past 40 years, many people in the UK at the end of life still face a distressing experience.  End of life care research led by Professor Julia Addington-Hall at the University of Southampton has been pivotal in making England the first country world-wide to measure end of life care quality from the patient perspective.  Our resulting work is integral to the way in which the NHS is held to account and has ultimately led to an improved service.

Our national user perspective survey is first in the world
Changing NHS accountability

The challenge

People in the UK at the end of life still experience distress, inadequate support and a lack of personalised care.  Research into care transitions of older people at the end of life found examples of failures in assessment and meeting needs, poor communication and organisation, and failures to treat people with dignity in a system designed to meet the organisation's, rather than the patients', needs.


In response to the evidence that improved care at the end of life was needed, the Department of Health issued its first national End of Life Strategy in 2008.  As part of this it sought robust and practical ways to measure the outcome of the changes resulting from the Strategy at a national level, as well as comparing NHS services geographically.

Our solution

Funded by the Department of Health our end of life care researchers developed the VOICES-SF retrospective questionnaire to measure bereaved relatives' judgements of the quality of care, and to test methods for its use in a national mortality follow-back survey. 

Following this, the Office of National Statistics carried out the first national mortality follow-back survey in England using both our recommended methods and VOICES-SF. This is the first national end of life care survey in the world. 


VOICES-SF has for the first time enabled the quality of end-of-life care to be measured nationally from a user perspective, identifying variations between geographical areas and improvements care in ways which matter to users. Our survey is integral to the way in which the NHS is held to account for the end of life care it provides and has ultimately led to an improved service.

The success of our research means that end of life care has a place on the agenda of NHS commissioners and providers and has a place in the NHS Outcomes Framework. It has also informed debates in the House of Lords.



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