Publications

This document is a brief, introductory guide to user involvement in end of life care. It aims to show why it's important to involve people, potential benefits and how to get started. It is based on learning from NCPC's user involvement project 2007-2010.

Jo Black, NCPC, June 2010, (A5, 12 Pages) Price £2.50 ISBN 1-898915-81-4

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We know that the big things like funding and training need to be addressed to ensure that everyone receives good care at the end of their life, but we’re told time and again that it’s the small things that make a difference. We don’t have to change the world to provide responsive care – we can change things here and now in the small, thoughtful ways. This document explores ways of doing this.

Jo Black, NCPC, June 2010, (A5, 4 Pages)

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The Minimum Data Sets are the National Survey of Patient Activity Data for Specialist Palliative Care Services. The survey celebrates its 14th year and continues to be a key source of information on NHS and voluntary sector services. The Minimum Data Sets are the UK’s only continuous source of data from both NHS and voluntary sector palliative care services.
ISBN 978-1-898915-80-5

May 2010, (A4, 76 Pages) £25.00. To buy this publication click here.

This briefing provides an overview of the picture of the specialist palliative care workforce across England in 2008/9. We have included in the briefing some data from the workforce surveys undertaken in 2005 and 2007 to illustrate national trends. The End of Life Care Strategy for England identified workforce development as one of the essential factors to the future success of the Strategy’s implementation. This briefing provides a useful overview of some of the particular aspects needing further attention.

Emily Sam, NCPC, May 2010 (A4, 12 pages) £7.00. ISBN 978-1-898915-78-4

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This film aims to inspire and encourage providers and commissioners of end of life care to consider everyone in their community. It presents a kaleidoscope of people who are often invisible, including those who are homeless, from black, minority ethnic communities and who have conditions other than cancer. It describes end of life care needs, how to respond and ways to ask people what they want.

June 2010, DVD. £5.00. To buy this DVD click here.

NCPC, in conjunction with Anchor, Alzheimer’s Society, Dementia UK, National Care Forum, St Christopher’s Hospice and Dying Matters have published a document identifying key priority areas for dementia within the DH’s quality markers for end of life care. The work was produced by NCPC’s Dementia Group and signposts to other resources which might help to meet each priority.

May 2010. To download this publication click here.  (262KB)

Whilst many people live well with Chronic Obstructive Pulmonary Disorder (COPD) for many years, it is the cause of death for approximately 25,000 people a year. It can therefore be extremely difficult to know how and when to start conversations about end of life issues, for fear of taking away a sense of hope. We asked around sixty people affected by COPD (patients, carers and former carers) how, when and with whom they would like to have conversations about end of life care. The guidance is based entirely on these discussions. It presents a unique perspective, containing practical hints on what to say and more importantly, what not to say. This guidance was produced with support from the British Lung Foundation and the Department of Health.

Jo Black (A5, 20 pages) Price £5 ISBN 1-898915-79-9

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Briefing 18 reports the findings of NCPC’s survey of SHAs, PCT commissioners and palliative care providers to find out whether commissioners and providers could account for the additional funds and whether they were reaching frontline services.

(March 2010) To buy this publication, click here.

This examines the need for stronger partnerships between dementia care and palliative care services to bring about improved care for people with dementia at the end of life. It explores what these partnerships need to reflect on and provides examples of tools to support practice when caring for somebody with advanced dementia at the end of life, including some to help identify the point of at which patients have a need for greater palliative care. It also makes recommendations as to what’s required from dementia care services and from palliative care services, and gives examples of partnerships already underway. Informed by the latest research and policy on palliative and dementia care, and written by experts from a range of clinical and policy backgrounds, it aims to encourage wider discussion on this complex but extremely important area of care.

December 2009 (A4, 36 pages) Price £15.00 ISBN 978-1-898915-76-8

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Benchmarking Analysis: Need Resourcing Outputs & Outcomes of Palliative and End of Life Care builds on our data analysis and assessment work. It is a preliminary analysis benchmarking of the financial resources available from both the NHS and voluntary sector sources against differential population need. Benchmarking of available resources against the indices of need can contribute to judgements about how well the availability of financial resources matches differential population need. It includes sections on institutional care (i.e. in hospices hospitals and specialist palliative care services in care homes). Headline data is presented at SHA level.

December 2009. Peter Tebbit. A4, 28 pages, Price £10.00. ISBN: 978-1-898915-75-1

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August 2009. To download this publication, click here.

Briefing 17 reports on the initial findings from a survey of doctors which was commissioned by a collaborative of national charities with an interest in end of life care, brought together by NCPC. The survey asked doctors about decisions they had made about the provision, withdrawing or withholding of treatment at the end of life. It also contained questions about doctors’ attitudes to the legalisation of physician-assisted suicide and euthanasia

June 2009. £5.00. To buy this publication, click here.

The Minimum Data Sets are the National Survey of Patient Activity Data for Specialist Palliative Care Services. The survey celebrates its 13^th year and continues to be a key source of information on NHS and voluntary sector services. The Minimum Data Sets are the UK’s only continuous source of data from both NHS and voluntary sector palliative care services.

January 2009, 8 Pages. £7.00. To buy this publication click here.

This publication is the culmination of over two years work looking specifically at the palliative and end of life care needs of people with dementia. It brings together current understanding of the issues and challenges and it is informed by people with dementia and their carers about their needs. Solutions identified through the project, including local practice examples, are included to support service development. The key findings of the publication are mapped against the nationally recommended pathway from the End of Life Care Strategy in England (EoLCS) to help integrate policy and practice.

February 2009, 44 Pages. £20.00. To buy this publication click here.

This summary guidance is intended to help patients and informal carers as well as health and social care staff in all settings, for example care homes, hospitals, hospices and primary care. Its aim is to introduce people to the MCA and its contents, to explain its importance for end of life care decision-making, and to provide a signpost to sources of further guidance and support. It also explains how the MCA can be used to identify and respect people’s choices about their future care, and to improve the quality of end of life care decisionmaking.

Simon Chapman

January 2009, ISBN 1898 915 71 3, 20 pages, Price £5.00

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