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Caring for the Dying at Home

Companions on the journey

Keri Thomas
General Practitioner with a Special Interest in Palliative Care
Macmillan GP Advisor
National Lead for Gold Standards
Framework Programme
National Clinical Lead Palliative Care
NHS End of Life Care Programme

Forewords by

David Colin-Thome
and
Jane Maher

@)CRC Press Taylor &Francis G m u p

Boca Raton London New York

CRC Press is an imprint of the

Taylor & Francis Group, an informa business
First published 2003 by Radcliffe Publishing

Published 2019 by CRC Press

Taylor & Francis Group
6000 Broken Sound Parkway NW, Suite 300
Boca Raton, FL 33487-2742

2003 Keri Thomas

CRC Press is an imprint of Taylor & Francis Group, an Informa business

No claim to original U.S. Government works

ISBN-13: 978-1-85775-946-4 (pbk)

This book contains information obtained from authentic and highly regarded sources. Reasonable efforts have
been made to publish reliable data and information, but the author and publisher cannot assume responsibility
for the validity of all materials or the consequences of their use. The authors and publishers have attempted to
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please write and let us know so we may rectify in any future reprint.

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invented, including photocopying, microfilming, and recording, or in any information storage or retrieval
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authors.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

Typeset by Advance Typesetting Ltd, Oxfordshire

 Contents

Forewords iv
Preface vii
About this book ix
Acknowledgements xvii
Glossary xx

Part 1: Palliative care at home: why is it important? 1

1 Introduction: companions on the journey 3
2 A modern way of dying 15
3 Living and dying at home 27
4 Needs-based care 43

Part 2: Present knowledge and words of wisdom: how can we begin? 61

5 Evidence-based care 63
6 Changes in a changing world 79
7 The key features of palliative care for patients with the common cancers 99
Susan Salt
8 Tripwires in palliative care 123
Susan Salt
9 Bereavement 157
10 Sources of help and words of wisdom 163

Part 3: The Gold Standards Framework — A Handbook for Practices and

the GSF Programme 173
11 Background to the Gold Standards Framework 177
12 Communication: Gold Standard 1 195
13 Coordination: Gold Standard 2 203
14 Control of symptoms: Gold Standard 3 217
15 Continuity of care out-of-hours: Gold Standard 4 227
16 Continued learning: Gold Standard 5 233
17 Carer support: Gold Standard 6 239
18 Care of the dying (terminal phase): Gold Standard 7 253
19 Getting going: tool kits and the next steps for the GSF Programme 259

Further reading 277

Appendix 279

Index 291
 Foreword

It gives me great pleasure in recommending this book to all who are interested and involved
in palliative care and, specifically, to all of us who work in primary care, as it is an excellent
framework for our clinical practice. Primary care remains the most popular part of the NHS
as it provides a local skilled generalist and holistic service. The USA academic Barbara
Starfield has long extolled the virtues of British primary care in offering a personal continuity
of service that is coordinated and longitudinal. Good palliative care that extends beyond
cancer alone, although cancer is the commonest cause of death, reaffirms the centrality of
primary care, and yet to achieve excellence in this area requires us to focus on a systematic
approach to care. The Gold Standards Framework, described here with its seven 'Cs', is an
excellent template for systematic and yet holistic care, a gold standard indeed for all aspects
of our care. This book of course offers far more in exploring wider aspects of palliative care
including aspects of spiritual, holistic care, and it leaves me far better informed and
enlightened. I am certain you will feel the same.

Professor David Colin-Thome

National Clinical Director of Primary Care
Department of Health
General Practitioner
Castlefields Practice
Runcorn
January 2003
Looking after the dying is often seen as an unpleasant and emotionally distressing aspect of
working in primary care. Many have been registered at the practice for years and witnessing
them stagger from one crisis to the next is really upsetting. And afterwards, we are there to
try and help the family and friends come to terms with what happened. All too often, a
colleague would visit a dying patient in their home and stay for 40 minutes or more. They
would come away, shaking their heads in sorrow, saying there was nothing they could do.
But they did a great deal for the patient and their families just by being there and supporting
them.
The Gold Standards Framework has transformed our practice's approach to the care of
the dying. The whole team no longer perceives palliative care as all doom and gloom and is
more confident that we can make a positive contribution. The teamworking, care coordination
and anticipation of problems mean that our patients experience fewer crises and have a
much better outcome. We are so pleased that we have decided to start applying the prin-
ciples of the Gold Standards Framework to all of our cancer patients from the point of
referral onwards.

David Lyon
General Practitioner
Castlefields Health Centre
Runcorn

It is with pleasure that I recommend Dr Thomas' book and the use of the Gold Standards
Framework in primary care. Caring for dying patients has to be one of the most rewarding
and challenging elements of community nursing and is an aspect of my district nursing role
that gives me immense personal and professional satisfaction. Whilst welcoming the shift
towards community-based provision for cancer patients, it cannot be ignored that this has
made a significant impact on district nursing resources. Often, when a patient has died the
team has questioned whether things could have been done better, could more support have
been given to the patient and carers; could planning have been improved; could the team
have thought further ahead about medication, home equipment, symptom control? We
knew that cancer services in the community needed to be improved if the challenges of the
NHS Cancer Plan (2000) were to be fulfilled.
When our primary healthcare team were introduced to the Gold Standards Framework
we found our answers. Here was a structure on which our clinical practice could be based
to significantly improve the experience of a dying patient in our care. As a coordinator for
GSF in my practice, I have found that the framework has provided the opportunity for the
whole team to communicate on aspects of care and to explore and change, where necessary,
our ways of working with cancer patients. These changes have had a profound effect.
Patient and carer are better supported and the team are strengthened in the knowledge that
they are providing the best possible quality of care. We will certainly continue to use this
excellent framework to support our services to cancer patients in the community.

Jane Melvin BSc (lions), RGN

District Nurse and Primary Care Cancer Nurse
Castlefields Health Centre
Runcorn
 Foreword

As Chief Medical Officer for Macmillan Cancer Relief it has been my privilege to work with
Ken Thomas for the last three years and to see the birth and development of the Gold
Standards Framework.
It will be of interest to anybody who is involved with the care of people with incurable
illness and as an oncologist I found much to inspire, learn and apply.
This book not only describes matters needed but has many examples and stories to inspire
along the way. It is truly the head, hands and heart of care. As Don Berwick says, the system
is important but people make the difference. I'm sure this book will inspire more people to
do just that.

Jane Maher
Chief Medical Officer
Macmillan Cancer Relief
January 2003
 Preface

There are many reasons for writing this book, some professional and some personal.
Professionally, I have been a GP for 20 years and have always nurtured a passion for palliative
care from within general practice, seeing its holistic and loving approach as encompassing
some of the best of medical care. I undertook further training as an SHO in Palliative
Medicine, and as a GP took the Diploma in Palliative Care and the MSc (Cardiff), continuing
to work part-time in hospices for over 12 years and witnessing first-hand the inspirational
care provided. The natural development of this interest was crystallised in the sessional role of
Macmillan GP Facilitator, which I undertook from 1998 for Calderdale and Kirklees Health
Authority, West Yorkshire. This involved visiting practices, running workshops and teach-
ing sessions, examining the barriers to improvement for community palliative care and
exploring ways of overcoming them.
Later, I became Regional Macmillan GP Advisor, supporting other Facilitators and linking
in with various national strategic developments — the NHS Cancer Plan, primary care
representative on the Commission for Health Improvement's Cancer Report, Supportive Care
Strategy Editorial Board member, Deputy National Lead for Primary Care in the Cancer
Services Collaborative of the NHS Modernisation Agency, National Council for Hospice and
Specialist Palliative Care member, etc.). But the mainstay of this work was derived from
my discussions with GPs, district nurses and specialists across the country about ways to
improve palliative care service provision in the community, based on their own grass-roots
practice and experience. In response to the commonly voiced need to improve out-of-hours
palliative care, we developed an award-winning local out-of-hours palliative care protocol
which led to the Macmillan Out-of-Hours Palliative Care Report in March 2000, since used
in the development of guidance by the Department of Health. In a similar way, the Gold
Standards Framework (GSF) detailed here, firmly rooted in primary care, was derived from
a local desire to improve round-the-clock palliative care for patients in the community, and
was later extended from West Yorkshire across the UK.
The second area of contribution is on a more personal level. I am a working mum with
five children at home and a brilliant, long-suffering husband, so I am constantly juggling
demands and prioritising, whilst attempting to keep perspective and balance amidst the
ordinary demands of family life, from sorting the socks to delousing the twins. This also main-
tains a rootedness and reminds me of what it is all for, and of the one thing in life I know to
be true above all else — love. As a clergy wife, I am indirectly in touch with the needs and
suffering of many within a community, and am privileged perhaps to benefit from many
discussions at a deeper level than usual. I live in the context of the fact that there is more to
life than this visible outer shell — the inner life, the spiritual, is vitally important. I write as
someone also personally affected by death, as I was widowed at the age of 25 when my first
husband, Andrew, was killed in a car crash in Africa. So the recognition of the briefness of
our lives, the perspective of living always in the knowledge of our dying, has sharpened my
keenness to live life to the full, to contribute and to better support others as they face their
own death.
viii Preface

Rooted in primary care and in real-life experience, my hope is that this book will make a
practical contribution to improving the care of the seriously ill in their final months of life at
home, and that it will enable and empower healthcare professionals to deliver excellence of
care, and to remain with patients and carers as 'companions on the journey'.

Keri Thomas
Shrewsbury
January 2003
 About this book

Death belongs to life as birth does.

The walk is in the raising of the foot as in the laying of it down.
Rabindranath Tagore, Stray Birds

Care of the dying at home matters to us as people

and as professionals
Amidst the diversity of the human condition there is one thing we know we all have in
common; that one day we will die. And for most of us, given a choice, we'd prefer to remain
at home for the majority of the time, and to die at home if possible, given adequate support.
Added to this, there is a consistent trend in all areas of healthcare towards increasing
community care and reducing expensive hospital bed occupation in this country; but cur-
rently far fewer are able to die at home than would wish to do so and there are too many
inappropriate and possibly preventable admissions to hospitals and, occasionally, hospices.
Cancer is now the biggest killer in the UK. About two in five of us will get cancer at some
point in our lives and one in four of us will die of it.' Adding heart disease to this total will
cover the majority of all deaths; most of us will be affected by these conditions, either our-
selves or within our families. So there are three reasons why community palliative care is a
vitally important subject:
1 At some stage in our lives, we are likely to be personally affected as individuals — this can
happen to anyone, whether medical or not, to ourselves or our families and friends.
2 Secondly, most within primary care feel strongly that this is an inherently important
issue which we pride ourselves on getting right. As community professionals we are able
to build on the unique relationship with our patients, developed over time, and can use
our privileged position to ensure the highest quality of care is given on a personal basis.
These are people not just patients, usually living amongst us, and the impact of care we
provide in primary care will be debated amongst those we live with in the community —
we may bump into patients' relatives at the school gate, at the supermarket and fre-
quently through other patients of the practice. So there are many incentives to do well
for the dying, and the ripples can be far reaching.
3 Finally there are some looming imperatives on the horizon in the form of clinical gov-
ernance agendas, primary care cancer standards, GMS contract awards, etc. At present
there are many who have developed this work out of interest and commitment to better
care; sometime soon it is likely there will be some mandatory targets for all of us in
primary care to reach. But before this becomes another 'must do' from on high, I appeal
to the former desire of all healthcare professionals to continuously strive to improve
care for the dying at home, as a basic ingredient of good primary care, and affirm the
essential supportive role of 'being there' for our patients.
So in varied ways, we may all have a vested interest in community palliative care; it is an
area that affects us as healthcare professionals and as people. The key questions are:
• What is the ideal model of care we would wish for ourselves and our families?
• How can we in primary care best respond to this challenge?
x About this book

Although most of us in primary care have been caring well for the dying for many years,
this is a rather neglected area of development which is now under the spotlight. Despite
being seen as a somewhat Cinderella service, primary care is very heavily involved in this
stage of care. It can, at minimum, take a few minutes and a quick tick of the right boxes to
refer someone to hospital for investigations for a suspected malignancy, although of course
it may be a far more complex process than this. But at the other end of the cancer journey
we can be very extensively involved, maybe visiting daily and at weekends, becoming per-
sonally challenged in providing much more than just medical care. We may use ourselves as
people even more than we use our prescription pads. We inherently understand the mean-
ing of supportive care and often provide the mainstay of palliative care for our patients. We are
spurred on now to raise our standards, inspired by the examples of the palliative care/hospice
movement, to improve care even further: inspired to bring about the kind of care that we would
wish for ourselves and our families — the 'doctor—family index'.

The aim of this book

The purpose of this book is to support, encourage and enable those in primary care to
make improvements in the care provided for their patients with any end-stage illness. It aims
to strengthen the role, confidence, system and skills of the primary healthcare teams (PHCTs)
as they deliver 'generalist' palliative care or supportive care to their patients.
This book is also something of a journey, describing:
• Part 1: why community care of those in the last months of life is important in the
current context, responding to the challenges of the palliative care movement and based
on patients' needs
• Part 2: how we can begin, using the evidence from published literature, knowledge of
change management and some key clinical information to help anticipate problems and
reduce the chance of tripping up, with other available help in the Appendix and on the
websites
• Part 3: what practical steps can be introduced, such as the Gold Standards Framework
(GSF) for Community Palliative Care, with information on the Gold Standards Frame-
work Programme, now extended across the UK.
The main message is that caring for the dying at home is an important and integral aspect
of primary care, which we generally do well, but which we can, with help, do even better.
It is an area close to our hearts and many see this as one of the most important things we do
— and maybe as a barometer of all other aspects of care. Putting patients at the centre of care
and drawing together the collective wisdom and experience of those involved in hands-on
primary palliative care, informed by the evidence from the literature, we can make changes
and raise standards, stronger together, to ensure we deliver the kind of care we would wish
for ourselves or our families. We can improve our own enjoyment, support and job satis-
faction and we can enable more to die well in the place of their choice.
Good palliative care is achievable. It is simply an application of normal primary care skills and
approach. It doesn't involve major changes. It is appreciated by patients and families. It improves
morale and team functioning and is very rewarding for all the team.
GP, Huddersfield, GSF Phase 1 and first GSF reference group
Hospital and hospice staff, managers, social workers, clergy, patients and carers may find
much of this of interest, but the focus is mainly on improving care delivered by healthcare
 About this book xi

professionals in the community, specifically primary healthcare teams. I write as a GP who

has worked extensively with hundreds of GPs and district nurses to deliver better care, so I
seek to represent the whole primary healthcare team (PHCT) here.
This book is intended for two general audiences and to be used in two ways:
1 Parts 1 and 2: as a resource book for anyone with a general interest in, and a desire to
improve, palliative care in the community, particularly those from PHCTs, i.e. GPs,
district nurses (DNs), practice managers and Macmillan nurses, and other clinical nurse
specialists, social workers, etc. The chapters on the role and developments in primary
care, the current context of the health service, change management and the evidence
base for developments in community palliative care such as the GSF programme will
be of interest to any involved in this area. The needs-based care chapter summarises
some available user views and sets the tone for further consideration.
The two useful clinical chapters, written by Dr Susan Salt, Consultant in Palliative Care,
are specifically directed towards those in primary care, to help with the proactive man-
agement of patients with the major cancers. In the advanced planning of future care for
our patients, a constant theme of this book, such information helps inform and alert us
to the possible clinical problems that may be lurking around the corner. Palliative care is
based on good general medicine, but there are several specific differences in drug usage
and conditions which are seen more frequently in hospices than in primary care. These
can sometimes catch us out and are summarised in the chapter on 'tripwires'.
I hope these pages will encourage and inspire you to look further into specialised texts,
and allow you to reflect on your current practice in the light of some very pragmatic,
rooted examples of good practice. Additional material can be accessed via the website,
www.radcliffe-oxford.com/caring.
2 Part 3: as a handbook for those involved in the Gold Standards Framework (GSF)
Programme for Community Palliative Care, currently running in the UK. This is based
on the Handbook for Practices used in the initial two phases of the programme. The
programme is supported by a central support team running conferences, training, a
website and project area facilitators who run local feedback meetings. The resource
material in the other parts will be of interest in explaining the foundation of the
Framework. Anyone interested in joining this programme, please contact us at the GSF
Central Team — see below.

For further information and details relating to the Gold Standards Framework (GSF)
Programme for Community Palliative Care:

Email: [email protected]
Tel: 0121 465 2029
Fax: 0121 465 2010
Website: www.goldstandardsframework.nhs.uk

See also www.modern.nhs.uk/cancer/endoflife and

www.macmillan.org.uk
xii About this book

These two audiences have different perspectives but may well overlap, causing this book
to be of specific use as a guide for the GSF programme and of more general interest to others.
In deference to the habit of many doctors (myself included) of reading books from back to
front and picking out the relevant sections that leap out of the page, and also because some
pages may be used fairly independently as stand-alone portions, there is occasional repetition
of a point across the three parts. For these two reasons I seek your forbearance and ask that
you use the parts you find most helpful, whether relating to the GSF or of general com-
munity palliative care interest. If when you've read the first part and felt inspired to get on
with it you want to jump straight to what to do about it in Part 3, please do.
Although fairly broad-based, there is always more to add and there are omissions I've had
to make. This does not claim to be a comprehensive text, and there will still be areas that may
rapidly become out of date. It is a collage of images of the current situation of 'generalist'
palliative care in the community in this country, with some pointers and worked examples
of possible ways forward for the future.

The Gold Standards Framework

The Gold Standards Framework (GSF) is further explained in Part 3. The framework is being
supported and rolled out UK-wide by Macmillan Cancer Relief, the Cancer Services Collab-
orative of the NHS Modernisation Agency and now the NHS End of Life Care Programme in
England. It is also endorsed by the RCGP. The key features of GSF are:
• It is a practical tool to facilitate better coordination, communication and delivery of
primary palliative care and improve the patient's experience of care. This includes:
— identifying this group of patients
— assessing and responding to their needs
— better planning of care
— with improved communication being the glue that binds it all together.
• It is characterised by having developed from grass-roots general practice upwards,
rather than a 'top-down' dissociated directive, with much listening, debating and testing
by those on the ground. It has to date been tested out in over 100 practices across the
UK, involving about 5000 patients, varying in detail as it is adapted and modified to fit
a variety of situations, but retaining the basic form.
• Three stages are suggested, to be used flexibly to establish the GSF in an area:
— step 1 — background work, raising interest and Cl and C2 (see p. 186)
— step 2 — adding on C3, C4 and C5 (see p. 186)
— step 3 — finally C6 and C7 (see p. 186), and the development of practice protocols and
six-monthly review/audit meetings
— later extending to supportive care of other patients from diagnosis.
• We can demonstrate improvements by measuring specific global outcomes, which are
increasingly important for clinical governance.
• Even more importantly, however, there are some intangible benefits which we find
difficult to measure but which have been found to improve, such as better levels of care
and support, better levels of communication, a greater sense of security and confidence
in our patients and their carers and better staff satisfaction and teamwork, etc.
• It is patient centred in that it attempts to improve the assessment of needs and refocus
on patients' and carers' priorities, both physical and psychosocial; this agenda-sharing
with patients aims to promote more involvement in decision making and retention of
control. Improving the sense of security at home is a key element.
 About this book xiii

• It is not a one-size-fits-all measure, and there will be variation in response to it, but its
success lies in the will of the people to improve care of the dying, with some suggested
tools and ideas to speed up the process; using borrowed piloted tools rather than con-
tinuous wheel reinvention. All can find something of benefit in it.
• It is a locally owned, people-based programme, with a central team providing support to
local project facilitators who work with the coordinators from each practice.
• It is a dynamic momentum, evolving and responding to the reflections and needs of the
primary care teams involved. It is constantly being evaluated and refined. Local ownership
and sustainability are important.
• Once established for cancer patients it can be extended to those with non-cancer
conditions and also to support patients at an earlier stage in the cancer journey, i.e. from
diagnosis or from fast-track referral.
• It aims to make life easier for practices not harder, saving time instead of costing time
in the final analysis — working more effectively. With central direction and resourcing,
shared ideas and worked examples, practices enjoy being part of a momentum across
the UK to improve community palliative care.
• It sits comfortably with other emerging themes such as clinical governance and legitimises
our supportive role. It affirms the aspiration to be a 'companion on the journey'.
The GSF helps build confidence that 'being there' is important — it's not just about science, but
it reinforces that we can make a positive contribution. Once established in cancer patients, the
principles can be extended to help all cancer patients at any stage and those with any life-
threatening condition.
HT, GP, Halton, GSF Phase 2
• At a time when many in primary care feel de-skilled, it reinforces the essential con-
tribution that good community care can provide in an area that may otherwise not be
addressed for any but the lucky few. It reinforces the effective doctor—nurse teamwork.
The Gold Standards Framework promotes and encourages that special and important triad of the
doctor, the nurse and the patient.
GP, Aberdeen, GSF Phase 2
• It specifically focuses on and formalises improving support for carers.
• It builds on the natural enthusiasm of the majority in primary care to develop this area.
• In line with the current trend towards community and intermediate care, primary care
commissioning, improving supportive care and responding to the lead given by the
modern hospice movement, the time is right to formalise developments in community
palliative care.
The GSF is like a crossword clue — when you see the answer it's really obvious. It's
non-threatening, non-prescriptive and awareness-raising, with attention to real individual
patient care.
EP, GP Facilitiator, Glasgow, GSF Phase 2
Many of the ideas, reflections and quotations put forward here have been derived from
experiences from practices across the UK involved in the first two phases of the GSF programme.
Hearing colleagues from one end of the country to another enthusing and enlivened about
the subject is both convincing and heartening, and I personally have been greatly encouraged
to continue with this work by the inspiration and enthusiasm of those taking part in the GSF
programme. I am extremely grateful to all those involved and indebted to them for their prag-
matic wisdom and constant encouragement.
xiv About this book

The view from the nations

Increasingly since devolution, there are significant differences in approach and in organ-
isational structures across the four nations of the UK. However, despite these variations,
people are basically the same across all borders, and the care we wish to provide for our
dying patients will be much the same. All the nations are responding enthusiastically to
the GSF programme, Scotland and Northern Ireland particularly, with a large number of
practices involved in Phase 2 and more planned in future. For example, there are plans for
most practices in Scotland to be aware of, or implement, the GSF in the next three years.
It is too clumsy to itemise each different organisational structure for each nation in the
text; this book is written from the experience initially in the English system, although it
has been a great joy and privilege working with projects across the nations. Therefore, this
general disclaimer asks you to read the equivalent regional term for each English one where
appropriate and to adapt the language as needed. However, brief notes are given below
regarding the significant differences in health service structures and a view of the response
to the Framework.

The view from Scotland (with thanks to David Millar,

Macmillan GP Advisor, Aberdeen)
Scotland lagged a little behind England in that the Scottish NHS Plan Our National Health:
a plan for action a plan for change was published in December 2000 and the Cancer Plan
Cancer in Scotland: action for change in July 2001. The latter, which was intended more as a
strategy than a plan, did support the development of managed clinical networks (MCNs) but
had very little to say about the role of primary care.
The 12 mainland health boards and three island health boards are the equivalent of
English health authorities. There are 27 acute hospital trusts, 12 primary care trusts and
one integrated trust. Local healthcare cooperatives (LHCCs) are the equivalent of primary
care groups (PCGs), although the average population served is less (65 000-70 000) and
they have no role in commissioning hospital services. There are three cancer networks
covering the west, north and south-east of Scotland (regional cancer advisory groups) with
differing structures and composition.
The Clinical Standards Board for Scotland (CSBS), which was set up in 1999, oversees the
monitoring process within the NHS in Scotland and relies heavily on guidelines produced
by the Scottish Intercollegiate Guidelines Network (SIGN). There are no specific primary
care cancer standards, although all but one of the Scottish health boards have agreed to
utilise the Royal College of General Practitioners (RCGP) Scotland Practice Accreditation
(PA) as a quality assessment process to satisfy the requirements of clinical governance.
Included in PA is the audit/significant event analysis of a number of cancer cases within
each practice.
Palliative care at home is an important issue to us, particularly in rural areas of Scotland,
far from any specialist input. The Scottish response to this Framework has been hugely
enthusiastic. A separate GSF in Scotland project team has been developed which so far
includes a fifth of all practices, with separate funding from the NOF, NHS and Macmillan. We
are keen to extend it to all cancer patients from diagnosis and to use it to develop the
primary cancer care agenda in Scotland.
 About this book XV

The view from Northern Ireland (with thanks to Brendan

O'Hare, GP and Macmillan GP Facilitator, Castlederg)
In Northern Ireland we had a review of cancer services based on the Calman Hine Report.
Stemming from this review, a cancer centre based in Belfast and five cancer units through-
out the province were established to deliver a high quality of cancer care to the population.
The number of palliative care consultants was increased and a network of Macmillan GP
Facilitators was established to raise the profile and standard of cancer and palliative care at
a primary care level.
Local Health and Social Care Groups (LHSCGs), our equivalent of primary care trusts
(PCTs), are currently struggling with negotiations between the GPC and the Department of
Health. GPs do not currently participate in these groups but hopefully will do in future, and
our input can ensure that palliative care receives a high priority at a strategic level.
The Macmillan GP Facilitators have been tremendously successful in addressing deficiencies
in palliative care provision in their various 'patches'. However, much work remains to be
done and Gold Standards provide a framework to ensure that the highest possible standard
of care is delivered to all patients in Northern Ireland. The Gold Standards Framework is
actually a benchmark or common standard against which we can measure the effective-
ness of our efforts.
In Phase 2 of the project there were three practices in Northern Ireland involved, but it
has been embraced with enthusiasm by the Macmillan Northern Ireland GP Facilitator
Group and around a third of GP practices in Northern Ireland are now using the GSF.

The view from Wales (with thanks to Kate Whitfield,

GP and Macmillan GP Facilitator, Powys)
Wales differs from England in several ways.
1 Structural differences. As from April 2003, there are 21 local health boards (LHBs) directly
accountable to the Welsh Assembly Government. There are no equivalent English strategic
health authorities and just three cancer networks covering huge geographical areas.
2 Delivery of care. Models of care have to be variable because most of the population is
concentrated in a few urban areas, but the majority of the countryside is very sparsely
populated with patients living great distances from district general hospitals and hospices.
In these areas palliative care is often provided by GPs, using the community hospitals.
Clearly, the Gold Standards Framework is very useful for raising standards in these
situations.
3 The Welsh Collaborative Care Pathway Project. This project is being widely adopted by
hospitals, hospices, GP practices and nursing homes across Wales, supported by the
Welsh Assembly. This relates specifically to the care of those in the last days of life and is
based on the Liverpool Integrated Care Pathway for the dying. The GSF programme
for those in the last months of life would therefore become a natural extension of this
work.
xvi About this book

An evolving Framework: people and paperwork

The GSF is an evolving programme, and this book is part of a dynamic movement, with
templates and updates available on the website which link in with recent national
developments; for example, the Supportive Care register sheets are updated in line with
recommendations on cancer databases from the NHS Information Authority.
But more than this, the real benefit is the fact that you embark on the journey together as
a practice team and group of motivated innovators. The papers are useful, but the people are
more important. They are the powerhouse behind this programme, and to me the real strength
and reason for the success of the Framework. The structures that bring people together
set off a process that will inevitably lead to real rooted change. As Don Berwick, founder of
The Institute of Healthcare Improvement, affirms, we need many things to improve care but
most importantly we need the dynamic momentum of a group of motivated people moving
on together.
Most striking is the enthusiasm of the PHCT — the typical reply is 'We're really busy but this is
something we all care about and we will make the time'. It is something about putting people
back in touch with the reasons they came into healthcare.
CCS, GP, Dorset
The real strength lies in living out the pages of the book in the most appropriate form.
Practice is reflected on and the quality of end-of-life care provided is built up slowly and
imperceptibly. New ideas and improvements in care will develop as teams take protected
time to consider ways to do this. (It's helpful to share these ideas with others via the website,
e-mail, conversations or at workshops.) Investing in people is the key, guided by a fresh look
at an important but age-old subject. We only have one chance to get this right. We may
struggle to succeed, but we owe it to our patients to try.

The five goals of the GSF

1 Symptom free — patients' symptoms are as well controlled as possible.
2 Place of care — patients are enabled to live well and die well where they choose.
3 Security and support — better advanced care planning, information, less fear,
fewer crises or admissions to hospital.
4 Carers are supported, informed, enabled and empowered.
5 Staff confidence, teamworking, satisfaction and communication are better.

Reference
1 Office of National Statistics (1999) Registration of cancer diagnosed in 1993-96, England and
Wales. Health Stat Quart. 4: 59-70.
 Acknowledgements

Gold Standards Reference Group

I would like to thank all those from Calderdale and Kirklees Health Authority who were
involved in the original multidisciplinary reference group: Dr Mary Kiely, Dr Susan Salt,
Jo Love, John Murgatroyd, Dr Chris Martland, Angela Robinson, Miranda Morris, Rosie
Norbury, Anne Briers, Lorraine Macdonald, Christine Springthorpe, Margaret Spark, Joyce
Swift, Julie Hoole, Cathy Inman, Helen Thornton, Dr Chris Houghton and Dr Birt Jindall.
Thanks particularly to Dr Susan Salt for her invaluable clinical contributions in Chapters 7
and 8.

Pilot practices: Phase 1

Many thanks to all those participating pilot practices in Phase 1, especially the wonderful
team of district nurse coordinators who I grew so fond of and who did such valiant work:
Joyce Swift, Brenda Bowers, Katie Meredith, Chris Pyrah, Angela Robinson, June Wilkinson,
Anne Calloqhan, Carol Atkin, Ann Fearnley, Audrey Keeshan and Dawn Gordon; and the
very supportive lead GPs: Mark Davies, Peter Gorman, Kate McMichael, Richard Gatecliff,
Chris Martland, Sheila Bennett, Lyn Mason, Mark Taylor, Mike Pacynko, Gill Bradley, Chris
Houghton and Sue Cameron.

Calderdale and Kirklees Health Authority, West Yorkshire

I would like to thank my old health authority, to which I will be forever indebted, for
giving me such a wonderful springboard for this work and providing me with such great
encouragement and support, especially Dr Chris Veal, Philip Sands, Dr Graham Wardman,
Elaine Fry, Claire Butler and the fantastic secretarial support from Alexis Duval and Helena
Condon. Also Drs Hilary Felton, Liz Higgins and Rob Lane of the local hospices I worked in,
and Lorraine Macdonald, Sarah Cost and other Macmillan nurses in the area.

Macmillan Cancer Relief and the Cancer Services

Collaborative: Phase 2
Thanks to all those who helped get Phase 2 going, in particular Glyn Purland (Macmillan
Project Director and a very good man to know); Marie Patchett, Claire Henry, Jodie Mazur
and Sally Cook of the Cancer Services Collaborative (wonderfully energetic and encouraging
stalwarts); Professor Helen Bevan and Jean Penny of the NHS Modernisation Agency for
their enthusiasm; the Macmillan GP Advisors, Drs Jane Maher, David Millar, Greg Tanner,
Gill Harding and Rosie Loftus; the GSF Steering Group, particularly Katie Booth, Jane Maher
and Frankie Shutt, plus other advisors, Dr John Ellershaw, Dr Bill Noble, Judith McNeil,
Tonia Dawson, Jane Bradburn, Alison Hirst, Kate Whitfield, Ros Johnstone and Katie Burall;
and for the encouragement and contributions from all Macmillan GP Facilitators taking
part, especially Euan Paterson, Brendan O'Hare, Charles Campion-Smith, Chris Woodyat,
xviii Acknowledgements

Peter Kiehlman, Rosalie Dunn, Steve Fraser, Darin Seiger, Cathy Hubbert, Christine Moss,
Kate Tully, Pam Selby and Cliff Richards. Also, the Yorkshire Cancer Network PCT cancer
leads and nurse facilitators, Rosaleen Bawn and Sue Steam. Particular thanks to Dr Hong
Tseung, Jane Melvin and Dr David Lyon of the Halton project for their wonderful support of
the GSF and contributions to this book.
Also, many thanks to those whose work has contributed enormously to this project:
Paul Morris, MGPF, St Helens, Pat Turton of the Bristol Cancer Centre, Dr Tim Greenaway
and Donna McLeggan of Manchester ACTS, Becky Miles of the National Cancer Alliance,
Peter Kaye for his excellent and inspiring writings, Dr Michael Downing and team from
the Victoria Hospice Society, Victoria, British Colombia, Canada for the wonderful home
care work and handbook, Dr Robert Dunlop, Dr Max Watson, Reverend Roger Cressey,
Chaplain at Pinderfields Hospital, Wakefield and Reverend Harry Edwards, Chaplain, Drs Wendy
Jane Walton, Teresa Griffin and Jeremy Johnson of Shrewsbury, and many others. Thanks
also to Gillian Nineham and Jamie Etherington of Radcliffe Medical Press for their encour-
agement and forebearance.

I am greatly indebted to Macmillan Cancer Relief and to many others not mentioned here,
but especially to all patients, doctors, nurses, friends and family who have contributed in
various ways to this work. I hope that this book is a testimony to the dedication and
commitment of so many working in our NHS and voluntary sectors to maintain the kind of
`loving medicine' that is at the heart of good patient care.
Thanks also to those in the parish of St Chad's, Shrewsbury, my home church and where
my husband is vicar, who have within a short space of time made us feel completely at home,
supported and enriched by their friendship — and especially Ronnie Bowlby and Mary and
Lawrence Lequesne for their support in writing this. I breathe in strength at St Chad's to
keep me going all week — I couldn't do without it.
Finally and most of all, thanks to my fantastic husband, Mark, who has been most
wonderfully supportive and long suffering, supplying me constantly with fresh rounds of
coffee and much needed support and common sense, and tolerating this sixth gestation, and
to my five stunningly gorgeous children, Megan, Ben, Bethany and seven-year-old twins Sophie
and Imogen, for being so tolerant of a distracted mum. They have put up with a cardboard
cut-out with only remnants of a brain remaining and have been a constant reminder of the
life-affirming and love-fulfilling joy that is the reason I keep going.
I would also like to dedicate this to the memory of Andrew Rodger, my first husband,
who died 20 years ago to the day (ironically, almost to the minute as I write!), who was and
is an inspiration to me in this work, and to his father, The Right Reverend Patrick Rodger,
who died only recently and sadly will not see in this life this edition of the book dedicated to
his son ... but maybe he knows anyway.
 Cover illustration:
`The Healing Touch'

I need to know that this body is my body. And I need to know everything that is happening to my
body. But most of all I need to know that you know that within my body there is me.
Healing is brought about not just by medicine. It's not just treatment which cures you but all
that encompasses the human touch.
`Healing Touch' is taken from the series of paintings and words 'The Emotional Cancer
Journey' (along with three other illustrations: `So Much Love' p. 1, 'Rest' p. 61 and 'Every-
thing You Need to Know You Have Learnt on Your Journey' p. 173) that document Michele
Angelo Petrone's experience of cancer.
Michele Angelo Petrone, a professional artist, was diagnosed with Hodgkin's Disease in
1994. The enormous response to this work, and the art workshops, lectures and educational
work for patients, carers and health professionals has been formalised into the charity, the
MAP Foundation (www.mapfoundation.org, email: [email protected]).
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