Carers Report: 10 recommendations for achieving organisational change

Providing comprehensive, person-centred assessment and support for family carers towards the end of life: 10 recommendations for achieving organisational change is a summary report of a project examining organisational structures and procedures needed to identify, assess and support carers during end of life care.

The project was led by Professor Gunn Grande, Division of Nursing, Midwifery and Social Work, University of Manchester and Dr Gail Ewing, Centre for Family Research, University of Cambridge.

There are clear and positive policy ambitions to achieve comprehensive, person-centred assessment and support for carers, but so far these take the form of aspirations. The proposed recommendations in this report are key building blocks to enable these aspirations to be implemented in practice.

This work will be followed by a national survey of hospice providers to establish what is currently in place to assess and support carers, compared against these recommendations.

This report is highly relevant in health and social care settings (hospice, hospital, primary and community care) where carers (family/friends) often play a pivotal role at the end of life.

It is particularly aimed at organisational leads, commissioners and policy makers because it provides evidence-based recommendations for the system changes required to enable practitioners to deliver comprehensive, person-centred carer assessment and support in everyday practice.

The authors hope that this report may be used by organisations to develop practice standards to begin to benchmark the support they provide for carers against evidence-based recommendations for comprehensive, person-centred carer assessment and support.

Gail Ewing, University of Cambridge

Gunn Grande, University of Manchester

Ewing G and Grande GE. Providing comprehensive, person-centred assessment and support for family carers towards the end of life: 10 recommendations for achieving organisational change. London: Hospice UK, 2018.

This work was supported by the NIHR Collaboration for Leadership in Applied Health Research and Care Greater Manchester at Salford Royal NHS Foundation Trust and the views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.

This report was written by Dr Gail Ewing, University of Cambridge and Professor Gunn Grande, University of Manchester. A full report of the project from which this summary is derived was submitted to Hospice UK and will form the basis for further publications.

This work was supported by:

• Dr Karen Spencer, Research Fellow, Division of Nursing, Midwifery and Social Work,
• University of Manchester
• Michael Spence, Programme Manager, NIHR Collaboration for Leadership in
• Applied Health Research and Care (CLAHRC) Greater Manchester
• Zoe Ashton, Facilitator, NIHR CLAHRC Greater Manchester.

The authors would like to thank the expert advisory group from Hospice UK for their advice and support: Dr Ros Taylor, Dr Sarah Russell, Stephen McCauley and Linda McEnhill.

This study was funded by Hospice UK and NIHR CLAHRC Greater Manchester. It was approved by University of Manchester Research Ethics Committee 4.

Published by Hospice UK in April 2018.