Publications by Category

The aims of this publication are to clarify the definition of Advance Care Planning and related terms, to provide practical guidance on core competences, education and training of different professional groups and related ethical and legal implication and to suggest next steps.

NHS End of Life Care Programme publication supported by NCPC. Feb 2007.

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This joint publication between NCPC and The Association of Palliative Medicine anticipates the Mental Capacity Act (2005) which is legally binding during 2007. It is a practical aid for all those who administer artificial hydration, explaining the terminology, rights and ethical framework; it also includes five case studies and various methods of dealing with ANH, from notifying decision-makers, to administering ANH in methods other than orally.

May 2007. Written by Dr Richard Partridge and Dr Colin Campbell. A4, 36 pages, Price £20.00. ISBN: 978-1-898915-53-9

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A concise summary of the salient points of the Artificial Nutrition and Hydration, NCPC's earlier publication. This summary guidance is intended to be used across all care settings by all care providers as a practical hands-on aid.

June 2007. Simon Chapman, Lucy Sutton and Eve Richardson. A4, 8 pages, Price £8.00. ISBN: 978-1-898915-54-6

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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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Following NCPC's earlier publication "Guidance on the Mental Capacity Act 2005" in October 2005, this guidance is principally written for professionals and organisations in all settings that provide palliative care services, either within specialist services or as part of their day-to-day care. People working in specialist palliative care units, hospices, hospitals, care homes and community care will all find it relevant. However, it is also intended to help patients, care home residents, informal carers, family members and people who want to understand how they care influence their future care.

March 2008, 44 Pages. £10.00. To buy this publication click here.

Developed originally in 1997, these guidelines have now been updated by multidisciplinary working party led by Professor John Ellershaw. The guidelines have been designed for the use of health care professionals who are caring for dying patients in all settings including primary care, care homes as well as in hospices. The guidelines now include a section on the use of drugs in the last days of life.

November 2006. Price: £20 per copy. Pages: 34. ISBN: 1 898 915 10 5

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

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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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In November 2003 The Palliative Care section of the Royal Society of Medicine (RSM) organised 'The History of Palliative Care – Looking Back, Taking Stock, Looking Forwards'. Derek Doyle's concluding speech of the day was his personal reflection on palliative care's progress through his career, the hope of it's continuing spread and availability. This was also Derek Doyle's valedictory address.

Doyle D (A4, 8 pages) Price £10 ISBN 1 898915 36 9

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This publication aims to review the research, policy and practice literature to identify what is known about user involvement in palliative care; to identify methods of accessing user views which are suitable for use in palliative care; to elicit the views of key informants (users, advocacy groups, researchers, practitioners and policy makers) on user involvement in palliative care; and to offer examples of best practice and advise how these might be further developed and sustained.

May 2008, 28 Pages. £15.00. To buy this publication click here.

This publication helps professionals address user involvement in palliative care. It aims to put ideas about user involvement into the context of palliative care and make them of practical use to professionals working in the field. This publication costs £10 per copy. ISBN: 1 898 915 40 7

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This publication (written by Dr. Katherine Froggatt) was published by NCPC in November 2004 as a starting point for consultation with diverse bodies that have an interest in living and the dying that older people experience at the end of life in care homes. The publication costs £20 per copy. ISBN: 1 898 915 39 3

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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, June 2010, (A5, 4 Pages)

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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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This joint publication between NCPC and the NHS End of Life Care Programme suggests ways that care home staff working in partnership with other organisations have improved the care that the residents now receive, whether in assessing needs support for staff, new roles, education and training. It highlights where organisations have brought a number of these elements together in a creative way to improve care.

June 2007. To download this publication click here.  (845KB)

Care homes with nursing are major contributors to palliative and end of life care. The purpose of this brief paper is to offer some insights into the question as to whether the volume of current provision of care homes with nursing is sufficient to meet local needs and what the consequences may be of any inadequate levels of provision.

June 2008, 12 Pages. £25.00. To buy this publication click here.

One of the first reports in the UK to draw much needed attention to the palliative care needs and experiences of minority ethnic older people. The report discusses ethnic disparities in health and clinical outcomes, highlights evidence suggesting poorer access to palliative care services for minority ethnic older people and draws attention to good practices and projects in the palliative care field aimed at reducing inequalities in palliative care. NCPC & PRIAE hope this publication will generate greater awareness and discussion of the issues addressed and help palliative care services to develop innovative approaches to addressing the palliative care needs of minority ethnic older people.

May 2006, 32 Pages. £15.00. ISBN: 1 898915 49 0.

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This publication is based on the NCPC's survey of the specialist palliative care workforce in England to assess issues surrounding non-medical prescribing (NMP) in palliative care. The results from this survey, together with the 2006 'Our Health Our Care Our Say' White Paper and the forthcoming End of Life Care Strategy prompted NCPC to investigate further the issues, solutions and impact of NMP in palliative care. This publication has been written to inform non medical prescribers, those thinking of initiating NMP, service planners, commissioners and policy makers.

March 2008, 18 Pages. £15.00. To buy this publication click here.

The purpose of this document is to consider the characteristics of cancer that triggered the development of modern palliative care. The document questions whether they are indeed unique, and if so whether they need to be retained as a distinct service. It also studies the risk of missing important elements concerning the nature of cancer as NCPC strives to meet its mission 'to promote palliative care for all who need it'.

December 2006, Joint NCPC and Macmillan Cancer Support Publication, (A4, 16 pages) Price £7.00

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This Focus on Commissioning discusses what the role of commissioners should be in relation to end of life care: in particular it suggests that commissioning practice should develop from one that merely procures services that providers make available to one that specifies what services are needed to meet the assessed end of life care needs of their populations.

Written by Peter Tebbit with Foreword by Professor Mike Richards. A4, 8 pages, Price £8.00. ISBN: 978-1-898915-51-5

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This paper is the proceedings of a seminar held in December 2000 which aimed to bring together groups that were actively pursuing the objectives set out in 'Opening Doors' (1995), to identify and share current research and practice in this area, and to see how further progress could be made. The six contributors outline a variety of recent research projects and practical service initiatives.

Mount J , et al, July 2001 (A4, 23 pages) Price £10.00 ISBN 1 898915 28 8

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In 2006 Peter Tebbit employed the methodology of needs assessment to demonstrate how population need varied between Primary Care Trust and Strategic Health Authority Populations. This work was published in September 2006 in the form of a Compendium of Data and is now updated and revised in this second edition. It includes updated mortality data and a set of new indices for circulatory disease, coronary heart disease, stroke and COPD.

May 2008, 52 Pages. £25.00. To buy this publication click here.

Palliative care should be available to all on the basis of need, not diagnosis. This paper opens up a vital debate for palliative care provision, outlining the scale and nature of the need for palliative care among patients with diseases other than cancer, and discussing the implications for existing hospice and specialist palliative care services in the UK.

Occasional Paper 14. Addington-Hall J, June 1998 (A4, 52 pages) Price £5.00
ISBN 1 898915 16 4, ISSN 1351-9441

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In March 2007 the Department of Health initiated a major consultation on the role and scope of Payment by Results. Comments were invited from a wide range of interested parties in the NHS, Social Services and the voluntary and independent sectors. This publication sets out the response of the National Council for Palliative Care.

October 2007. A4, 9 pages, Price £8.00.

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In March 2007 the Department of Health initiated a major consultation on the future shape of commissioning practice. Comments were invited from a wide range of interested parties in the NHS, Social Services and the voluntary and independent sectors. This publication sets out the response of the National Council for Palliative Care.

October 2007. A4, 11 pages, Price £8.00.

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This publication was published in January 2004 and produced with the aim of helping school staff to engage in conversations with bereaved children. It aims to raise awareness of the school-related problems that young students’ bereavements may pose and offer practical advice for staff.

This publication costs £5. ISBN: 1 898 915 34 2

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This report by Shirley Firth thoroughly reviews the recent literature about the use of palliative care services by people from ethnic minorities and places it in the wider context of debates about ethnicity and culture. The principle behind the document is to examine ways of improving services from the perspective of black and ethnic minorities themselves, not just to explore questions of uptake. Recommendations are made on good practice in the provision of care, training, and the future research agenda.

Firth S, July 2001 (250x177mm, 116 pages) Price £15.00 ISBN 1 898915 27 X

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This publication identifies the need to develop a long term vision for palliative care services over the next 20 years. The document reports on NCPC's progress to date and is set in the context of many of the developments occurring in palliative care today. This publication costs £10.

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Chronic respiratory diseases (CRD) account for a significant number of UK deaths and are set to become the fourth leading cause of death worldwide by 2030. This new NCPC publication considers some of the implications for palliative and end of life care services, drawing from a wide range of innovative practice examples and recent policy. It includes a representation of the End of Life Care pathway mapping out some of the priorities for working with people CRD, which will be of use to both service providers and commissioners. This publication costs £15.

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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.

The overarching theme of this publication is collaboration. This publication outlines where barriers can occur and provides practical solutions to facilitate effective partnership working to benefit people with dementia at the end of life. This publication also has a wealth of valuable material; case studies and examples of local projects with key learning points, as well as practical tools to enable professionals in health and social care to build the skills and expertise necessary to develop their own practice.

January 2008, 60 Pages. £25.00. To buy this publication 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)

This document provides results of the survey of neurology nurses that was carried out jointly between NCPC and the Royal College of Nursing Neuroscience Forum. The overriding message from this survey and NCPC’s previous work is the need for the different people caring for those with neurological conditions towards the end of life to come together and work in collaboration, sharing skills and expertise.

June 2008, 32 Pages. £15.00. To buy this publication click here.

This publication will provide care homes, hospices and the health service with the significant guidelines and necessary actions to ensure that the half a million people living in care homes across the UK receive the essential palliative care services they require.

'Focus On Care Homes' examines the learning from the 2004 NCPC discussion document 'Palliative Care in Care Homes for Older People' and the subsequent conference and multi-agency discussions which followed. It identifies present and potential challenges for the provision of palliative care in care homes and suggests actions to address these challenges.

July 2005. This publication costs £7.00. To buy this publication, click here.

The very first national survey of heart failure nurses was conducted by NCPC's Circulatory and Respiratory Conditions Policy Group in September 2005. The questionnaire asked about who was employing these nurses; their work setting; the degree of contact with specialist palliative care; the number of referrals made; heart failure nurses' palliative care training needs; the existence of referral criteria and service guidelines; and awareness of the end of life care tools within the heart failure workforce. The results of the survey are published in this document with recommendations.

January 2006. 12 pages, Price £7.00

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This publication brings together the vast amount of learning that has occurred since NCPC’s Neurological Conditions Policy Group was established in March 2005. It presents the methods and conclusions of the first ever national survey of palliative care, neurology and rehabilitation services. It relates the journey from developing a pathway for meeting the palliative care needs of people with neurological conditions, to designing the final pathway, which is explained in detail. The document also contains illustrative case studies and best practice examples. As such, it is a valuable resource for all SHA, PCT and specialist palliative care teams, as well as all neurological conditions specialists.

October 2007. A4, 32 pages, Price £15.00. ISBN: 978-1-898915-56-0

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Care home managers will be better able to provide the best levels of treatment and support for residents at the end of life thanks to the availability of a new guide which provides details about practical steps that can be taken to improve care. The NHS End of Life Care Programme, working in partnership with the NCPC, has produced a guide that will help care homes to care for residents' physical, psychological, social and spiritual needs to achieve the best quality of life for patients and their families, even when this is likely to be short. The Introductory guide to end of life care in care homes is aimed at care home managers and staff interested in improving care for residents in the final stages of life.

March 2006, 20 Pages. To download this publication for free click here.  (462KB)

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, 76 Pages. £25.00. 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 guidance is designed to support implementation of the End of Life Care Strategy, Putting People First’s person alisation agenda and the NHS Next Stage Review and associated care pathways, for older people with multiple conditions at the end of life.

October 2008, 24 Pages. £15.00. To buy this publication click here.

Through the Autumn, the Department of Health ran a major consultation to influence the forthcoming White Paper on Health and Social Care. NCPC was asked to 'gather the views of people at the end of their lives', and as a result we have consulted with service users, subscribers and all key stakeholders. This publication reproduces the response sent by NCPC as its formal contribution to the consultation.

January 2006. 6 pages. To download this publication, click here (45KB)

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 This publication is the culmination of over two years’to help integrate policy and practice.

February 2009, 44 Pages. £20.00. ISBN 1 898915 73 7

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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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‘Progress with Dementia’ has been developed for all those involved in caring for people with dementia. Its purpose is to summarise the key issues in palliative care for people with dementia, describe the development of NCPC’s new dementia project and outline NCPC’s early findings in this emerging area.

Alison Blight. August 2007. A4, 24 pages, Price £12.00. ISBN: 978-1-898915-55-5

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The Older People’s Policy Group (OPPG) has been looking at the specific challenges and opportunities of meeting people’s palliative care needs in the housing setting. Sheltered and Extra Care Housing: an overview for health and social care professionals is the first publication in this series of work. It gives details of the housing models that exist. It is however important that this document is considered in line with other aspects of the OPPG work in particular, that on care homes, multiple morbidity and dementia

NCPC/Housing 21, March 2008 (A4, 10 pages) ISBN 978-1-898915-63-8

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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) ISBN 978-1-898915-78-4

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This Briefing sets out how NCPC working with its partners across the voluntary statutory and independent sectors intends to play its part in helping to turn the vision set out in the strategy into reality.

(November 2008) To buy 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) To buy this publication, click here.

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.